Science.gov

Sample records for contact dementia caregivers

  1. [The dementia patient caregiver].

    PubMed

    Bagnati, Pablo M

    2010-01-01

    Dementia results in an important economic, social and personal burden. To care for a patient with dementia can be a trascendent learning experience. At the same time, the caregiver's role can become strenuous physical and mental work. This article reviews the importance of assessing the caregiver from the moment of diagnostic work up, the stages the caregiver goes through in the disease evolution, and the "Caregiver syndrome" where the caregiver can become the "second victim" of dementia.

  2. Helping Dementia Caregivers Through Technology.

    PubMed

    Fowler, Christianne Nesbitt; Haney, Tina; Lemaster, Margaret

    2016-04-01

    It is estimated there are between 43.5 and 65.7 million caregivers in the United States who provide unpaid care for older adults. Although the number of informal caregivers is expected to continue to increase, few programs have been established in home healthcare agencies to support these caregivers. This article describes a project that used a unique Web site to connect caregivers of people with dementia in a geographic region with an interprofessional group of healthcare providers and caregiver peers. Virtual Healthcare Neighborhood (VHN) was developed and maintained by an interprofessional group of healthcare providers from nursing, physical therapy, clinical counseling, and dental hygiene. The VHN provided weekly information on topics relevant to caring for a loved one with dementia at home as well as Question and Answer and Social Support Blogging sections for use by participants. This project was viewed as a positive and helpful method to provide support for caregivers of homebound older adults that could be easily replicated by home healthcare agencies.

  3. Helping Dementia Caregivers Through Technology.

    PubMed

    Fowler, Christianne Nesbitt; Haney, Tina; Lemaster, Margaret

    2016-04-01

    It is estimated there are between 43.5 and 65.7 million caregivers in the United States who provide unpaid care for older adults. Although the number of informal caregivers is expected to continue to increase, few programs have been established in home healthcare agencies to support these caregivers. This article describes a project that used a unique Web site to connect caregivers of people with dementia in a geographic region with an interprofessional group of healthcare providers and caregiver peers. Virtual Healthcare Neighborhood (VHN) was developed and maintained by an interprofessional group of healthcare providers from nursing, physical therapy, clinical counseling, and dental hygiene. The VHN provided weekly information on topics relevant to caring for a loved one with dementia at home as well as Question and Answer and Social Support Blogging sections for use by participants. This project was viewed as a positive and helpful method to provide support for caregivers of homebound older adults that could be easily replicated by home healthcare agencies. PMID:27023296

  4. The caregiving experience among Hispanic caregivers of dementia patients.

    PubMed

    Mier, Nelda

    2007-01-01

    This research reviewed studies that investigated factors influencing the caregiving experience among informal Hispanic caregivers of dementia patients. This review identified 24 journal articles published between 1985 and 2003. Variables studied were depression and social support. In addition, methodological issues were detected such as sampling bias and multiple measurements. This review concluded that there is a need for an extensive, in depth research of the caregiving experience among Hispanics and further research needs are discussed.

  5. Dementia: The Experience of Family Caregivers.

    ERIC Educational Resources Information Center

    Chenoweth, Barbara; Spencer, Beth

    1986-01-01

    Caregivers of family members with dementia of the Alzheimer's type were surveyed for their experiences with early symptoms, obtaining a diagnosis, home care, and institutionalization. At each stage in the process of providing care there are new and different stresses that can be ameliorated by appropriate professional assistance. (Author)

  6. Dementia, Caregiving, and Controlling Frustration

    MedlinePlus

    ... for you. Behaviors often associated with dementia, like wandering or asking questions repeatedly, can be frustrating for ... or tasks you need help with. Keep in mind that people feel useful and gratified when they ...

  7. A trial of dementia caregiver telephone support.

    PubMed

    Martindale-Adams, Jennifer; Nichols, Linda O; Burns, Robert; Graney, Marshall J; Zuber, Jeffrey

    2013-12-01

    The purpose of this study was to determine if telephone support groups for dementia caregivers have an effect on bother with patient behaviours, burden, depression, and general well-being. The randomized controlled trial compared telephone support groups (15 groups of 5 or 6 caregivers) with control groups (print materials). Groups met 14 times over 1 year. The 1-hour sessions included content on education, coping skills, and support. Data were collected at baseline and at 6 and 12 months. The sample comprised 154 caregivers, 77 per arm, providing care to veterans with dementia or a veteran caregiver. Bother was found to differ significantly at baseline. There were no significant treatment effect differences between study arms. Participants anecdotally reported improvement. It was concluded that telephone support groups are an efficient way to interact with caregivers. Further research should test different models of care. Interventions that are targeted to specific needs or occur frequently may provide better support for caregivers of individuals with a worsening condition.

  8. Improving caregivers' well-being by using technology to manage nighttime activity in persons with dementia.

    PubMed

    Spring, Heather J; Rowe, Meredeth A; Kelly, Annette

    2009-01-01

    This article reports the qualitative arm of a mixed-methods study designed to test an in-home nighttime monitoring system (NMS) that tracks the nighttime activity of persons with dementia. Fourteen caregiver interviews were analyzed using grounded theory/full conceptual description methods to determine the issues associated with providing care at night and to explore the benefits of using the NMS. Caregivers not using the NMS experienced sleep disruption, overwhelming worry, and loss of personal space, leading to decreased energy and changes in mood. When the NMS was used, caregivers reported improved "peace of mind." The fear and uncertainty associated with worry was alleviated by reliable alerts regarding the whereabouts of the person with dementia. Some caregivers were able to better balance needs for personal space with needs to remain in contact with the person with dementia. Generally, caregivers reported improved quality of sleep, although some caregivers reported more awakenings due to the system alerts. PMID:20077992

  9. Typical and Atypical Dementia Family Caregivers: Systematic and Objective Comparisons

    ERIC Educational Resources Information Center

    Nichols, Linda O.; Martindale-Adams, Jennifer; Burns, Robert; Graney, Marshall J.; Zuber, Jeffrey

    2011-01-01

    This systematic, objective comparison of typical (spouse, children) and atypical (in-law, sibling, nephew/niece, grandchild) dementia family caregivers examined demographic, caregiving and clinical variables. Analysis was of 1,476 caregivers, of whom 125 were atypical, from the Resources for Enhancing Alzheimer's Caregivers Health (REACH I and II)…

  10. Typical and atypical dementia family caregivers: systematic and objective comparisons.

    PubMed

    Nichols, Linda O; Martindale-Adams, Jennifer; Burns, Robert; Graney, Marshall J; Zuber, Jeffrey

    2011-01-01

    This systematic, objective comparison of typical (spouse, children) and atypical (in-law, sibling, nephew/niece, grandchild) dementia family caregivers examined demographic, caregiving and clinical variables. Analysis was of 1476 caregivers, of whom 125 were atypical, from the Resources for Enhancing Alzheimer's Caregivers Health (REACH I and II) studies. Based on statistical and clinical significance, there were large effects for demographics but no large effects among caregivers or care recipients on clinical and caregiving variables. Non-spouse family members were more likely to be caring for women and unmarried individuals. Grandchildren and nieces/nephews provided care for older care recipients. For care recipients who are unmarried, older, or women, fewer care possibilities may be available; consequently family members other than spouse or children may become their caregivers. Once an individual becomes a caregiver, the clinical experience of dementia caregiving is similar across caregiver types. These findings have implications for clinical care and public policy. PMID:21391405

  11. Characteristics of Depressed Caregivers of Veterans With Dementia.

    PubMed

    Bejjani, Carla; Snow, A Lynn; Judge, Katherine S; Bass, David M; Morgan, Robert O; Wilson, Nancy; Walder, Annette; Looman, Wendy J; McCarthy, Catherine; Kunik, Mark E

    2015-11-01

    This study examined the characteristics of caregivers and persons with dementia (PWD) to determine their association with caregiver depression. Participants included 508 PWD (veterans) and 486 caregivers from Boston, Houston, Providence, Beaumont (Texas), and Oklahoma City, identified from diagnoses from medical records and recruited from February 2007 to July 2009, for a larger study evaluating Partners in Dementia Care, a care-coordination intervention. Characteristics evaluated for PWD included activities of daily living, instrumental activities of daily living, cognitive impairment, and disruptive behavior. Caregiver characteristics evaluated included caregiver unmet needs, support-service use, and number of informal helpers. Caregiver depression was measured using the Iowa form 11-item Center for Epidemiologic Studies Depression Scale. Depressed caregivers reported significantly more unmet needs than the nondepressed caregivers. Depressed caregivers also reported a high frequency of disruptive behavior in their PWD. Caregiver perceptions of unmet needs may be an important target for intervention.

  12. Persons with Dementia and Their Caregivers Using GPS.

    PubMed

    Øderud, Tone; Landmark, Bjørg; Eriksen, Sissel; Fossberg, Anne Berit; Aketun, Sigrid; Omland, May; Hem, Karl-Gerhard; Østensen, Elisabeth; Ausen, Dag

    2015-01-01

    The aim of the study is to generate knowledge on the use of Global Positioning Systems (GPS) to support autonomy and independence for persons with dementia. By studying a larger cohort of persons with dementia (n=208) and their caregivers, this study provides essential knowledge for planning and implementing GPS technology as a part of public health care services. Commercially available GPS technology was provided to the cohort of 208 persons with dementia from nineteen different Norwegian municipalities. The participants used GPS when performing outdoor activities as part of their daily life during a period of time between 2012 and 2014. Their family caregivers were instructed on how to use the GPS technology for locating the participants. The study documents that using GPS for locating persons with dementia provide increased safety for the person with dementia, their family caregivers and their professional caregivers. Furthermore the results confirm that by using GPS, persons with dementia may maintain their autonomy, enjoy their freedom and continue their outdoor activities despite the progression of the disease. Preconditions for successful implementation are that health professionals are trained to assess the participant's needs, that ethical dilemmas are considered, that caregivers have adequate knowledge about using the technology and that procedures and routines for administrating the GPS and locating persons with dementia are established. Early intervention and close collaboration between persons with dementia, family caregivers and professional caregivers are important for successful implementation of GPS in public health care.

  13. Culturally Sensitive Dementia Caregiving Models and Clinical Practice

    ERIC Educational Resources Information Center

    Daire, Andrew P.; Mitcham-Smith, Michelle

    2006-01-01

    Family caregiving for individuals with dementia is an increasingly complex issue that affects the caregivers' and care recipients' physical, mental, and emotional health. This article presents 3 key culturally sensitive caregiver models along with clinical interventions relevant for mental health counseling professionals.

  14. Sleep in Persons with Frontotemporal Dementia and Their Family Caregivers

    PubMed Central

    Merrilees, Jennifer; Hubbard, Erin; Mastick, Judy; Miller, Bruce L.; Dowling, Glenna A.

    2014-01-01

    Background Dementia is associated with disruptions in sleep and sleep quality for patients and their family caregivers. Little is known about the impact of frontotemporal dementia (FTD) on sleep. Objective The purpose of this study was to characterize sleep in patients with frontotemporal dementia and their family caregivers. Methods Twenty-two patient-caregiver dyads were enrolled: Thirteen behavioral variant FTD (bvFTD) and nine semantic dementia (SD). Sleep and sleep quality data were collected for two weeks using diaries and Actiwatches. Results Patients with bvFTD and SD spent more time in bed at night compared to their caregivers. Nighttime behaviors were reported more frequently by caregivers for the bvFTD patients and strongly correlated with caregiver distress. Actigraphy data demonstrated normal sleep efficiency and timing of the nighttime sleep period for both patients and their caregivers. Caregivers of patients with bvFTD reported poorer sleep quality compared to the SD caregivers. A greater number of bvFTD caregivers compared to SD reported negative aspects of sleep quality for themselves and used sleep medications more frequently. Conclusion The clinical manifestations of bvFTD appear to be associated with different and more distressing impacts on the caregiver sleep quality than SD. PMID:24589648

  15. Coping with cognitive impairment and dementia: Rural caregivers' perspectives.

    PubMed

    Branger, Camille; Burton, Rachel; O'Connell, Megan E; Stewart, Norma; Morgan, Debra

    2016-07-01

    Caregiving in a rural context is unique, but the experience of rural caregivers is understudied. This paper describes how rural caregivers cope with caring for a loved one diagnosed with mild cognitive impairment or dementia using qualitative description to generate a low-inference summary of a response to an open-ended question. This approach allowed these rural caregivers to describe their positive experiences in addition to the more commonly explored caregiver experiences related to stress. Analyses of coping revealed use of social support, engaging in relaxing and physical activity, and cognitive reframing. In addition, caregivers reported strong faith and religiosity, and to a lesser frequency behavioral changes, checking in with the person with dementia via telephone, and joint activity. Predominantly, these methods reflect approach-based strategies. The current data suggest that these caregivers manage well and adopt adaptive coping strategies to meet the demands of the caregiving role. PMID:24951255

  16. Cognitive stimulation by caregivers for people with dementia.

    PubMed

    Milders, Maarten; Bell, Stephen; Lorimer, Angus; MacEwan, Tom; McBain, Alison

    2013-01-01

    Cognitive stimulation (CS) is a psychological intervention for people with dementia aimed at maintaining cognitive functioning. CS provided by caregivers would allow long-term maintenance without greatly increasing demands on health services, but raises questions concerning treatment fidelity and acceptability, which were investigated in this study. Caregivers of home-living people with dementia were trained to provide CS activities to their relative with dementia. Recordings of intervention sessions and analysis of training manuals suggested adequate delivery of the intervention. Dyads continued with the activities after caregiver training had stopped. In addition, presentation of the activities without supervision from a health care professional had no detrimental effect on well-being in the caregiver or the person with dementia. The majority of caregivers indicated that, even though they experienced some burden from doing the activities with their relative, they themselves had also benefited from the intervention and intended to continue with some of the activities.

  17. North Dakota assistance program for dementia caregivers lowered utilization, produced savings, and increased empowerment.

    PubMed

    Klug, Marilyn G; Halaas, Gwen Wagstrom; Peterson, Mandi-Leigh

    2014-04-01

    North Dakota's state-funded Dementia Care Services Program provides individualized assistance to caregivers of persons with dementia. Caregivers can contact program representatives at any time and may continue to contact them throughout the years they are caring for the person with dementia. During the program's first forty-two months of operation (January 2010 to June 2013), care consultants assisted 1,750 caregivers, primarily family members, of 951 persons with dementia. In survey responses and other self-reported data, the unpaid caregivers credited the assistance program with helping them feel more empowered, consider their charges less likely to be placed in long-term care, and use less potentially avoidable medical services such as hospitalizations and 911 calls. The program's estimated potential savings were $39.2 million from delayed long-term care placement and $0.8 million from reduced use of medical services, and its two-year costs were $1.2 million. The program's success with its rural service population, for which travel tends to be difficult and resources limited, provides a model for others to adapt. It also encourages further research on impacts of individualized support programs on persons with dementia and their caregivers. PMID:24711321

  18. Family-based therapy for dementia caregivers: clinical observations

    PubMed Central

    MITRANI, V. B.; CZAJA, S. J.

    2008-01-01

    Family caregiving for dementia patients is a major social and clinical problem. Family caregivers face major stressful emotional, social and economic burdens, and the negative consequences associated with caregiving are well documented. Given the projected increase in the number of people with dementia, there is a need to identify approaches that will help families manage the challenges of caregiving. Social support from friends and family members has consistently been found to mediate caregiver outcomes, yet many caregivers face problems with isolation and estrangement from family members. In this regard, family-based therapy is a promising intervention for increasing social support for caregivers, and enhancing their quality of life and ability to provide care.This paper will discuss how family-based therapy can be applied as an intervention for family caregivers of dementia patients.The clinical implications of specific interactional patterns will be presented via case examples from an ongoing clinical trial with white American and Cuban American caregivers of dementia patients.The intent is to demonstrate how identification of interactional patterns is a valuable tool for implementing family-based interventions. PMID:18548132

  19. Religious and Spiritual Dimensions of the Vietnamese Dementia Caregiving Experience

    PubMed Central

    Hinton, Ladson; Tran, Jane NhaUyen; Tran, Cindy; Hinton, Devon

    2010-01-01

    This paper focuses on the role of religion and spirituality in dementia caregiving among Vietnamese refugee families. In-depth qualitative interviews were conducted with nine Vietnamese caregivers of persons with dementia, then tape-recorded, transcribed, and analyzed for emergent themes. Caregivers related their spirituality/religion to three aspects of caregiving: (1) their own suffering, (2) their motivations for providing care, and (3) their understanding of the nature of the illness. Key terms or idioms were used to articulate spiritual/religious dimensions of the caregivers’ experience, which included sacrifice, compassion, karma, blessings, grace and peace of mind. In their narratives, the caregivers often combined multiple strands of different religions and/or spiritualities: Animism, Buddhism, Taoism, Confucianism and Catholicism. Case studies are presented to illustrate the relationship between religion/spirituality and the domains of caregiving. These findings have relevance for psychotherapeutic interventions with ethnically diverse populations. PMID:20930949

  20. Long-Term Adaptation to Institutionalization in Dementia Caregivers

    ERIC Educational Resources Information Center

    Gaugler, Joseph E.; Pot, Anne Margriet; Zarit, Steven H.

    2007-01-01

    Purpose: Longitudinal research in dementia has acknowledged the importance of transitions during the course of family caregiving. However, long-term adaptation to institutionalization has received little attention. This study attempts to describe caregivers' adaptation (changes in stress, well-being, and psychosocial resources) to placement up to…

  1. Christianity and Resilience as Experienced by Caregivers of Dementia Patients

    ERIC Educational Resources Information Center

    Lackey, Steven L.

    2014-01-01

    The purpose of this study was to examine the role and relationship of the practice of Christian beliefs and resilience in the context of dementia patient caregivers' lives. The guiding question was "What is the relational nature of the practice of Christian beliefs and resilience in the lived experiences of caregivers of dementia…

  2. Caregiving and Adults with Intellectual Disabilities Affected by Dementia

    ERIC Educational Resources Information Center

    Courtenay, Ken; Jokinen, Nancy S.; Strydom, Andre

    2010-01-01

    Authors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997-2008 on the current knowledge on social-psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level…

  3. Caregiving for Dementia in Asian Communities: Implications for Practice

    ERIC Educational Resources Information Center

    Wang, Donna S.

    2012-01-01

    Dementia can be debilitating not only for the older adult suffering from memory loss and confusion, but for family members as well. Understanding caregiving for ethnic minorities is critical. In Asian communities, addressing dementia and other mental health issues can be compounded by cultural factors such as perceptions of mental health and…

  4. The Impact of Living Arrangements on Dementia Caregivers' Sleep Quality.

    PubMed

    Simpson, Cherie; Carter, Patricia

    2015-06-01

    In the United States half of the 15 million informal caregivers of persons with Alzheimer's disease or a related dementia (PWDs) do not live with the PWD. This paper compares the sleep quality and health of 59 community-dwelling caregivers living with the PWD and 21 living apart from the PWD. Variables of interest were caregiving experience (hours caregiving, problematic behaviors of the PWD, caregivers' perception of dementia severity), sleep quality, and health (perceived health, stress, and depressive symptoms). Parametric unpaired t tests were used to calculate the differences between key variables. Multiple regression models were constructed, controlling for age, gender, behavior index, and dementia severity to examine the variance explained by living arrangements on sleep quality and health. Caregivers living apart from the PWD experienced the same level of poor sleep quality as did caregivers living with the PWD. The living arrangements of the caregiver did not make a unique contribution to sleep quality or health variables except for reports of unhealthy days. Given the importance of good quality sleep for health, the findings highlight the importance of evaluating caregivers living apart from the PWD for sleep problems with the same level of concern as one would have for those living with the PWD.

  5. Pain in Hospice Patients With Dementia: The Informal Caregiver Experience

    PubMed Central

    Tarter, Robin; Demiris, George; Pike, Kenneth; Washington, Karla; Oliver, Debra Parker

    2016-01-01

    Introduction At the end of life, patients with dementia often experience high levels of pain due to complex interplay of disease processes and numerous barriers to symptom management. In the hospice setting, informal caregivers play an essential role in pain management. This study describes their experience managing pain in hospice patients with dementia. Methods We conducted a qualitative analysis of audio-recorded interviews with informal caregivers of hospice patients with dementia who had chosen pain as the challenge they wanted to work on within a problem-solving therapy intervention. Results The thematic analysis of sessions with 51 caregivers identified 4 themes: difficulty in communicating with patients, lack of consistent guidance from health-care professionals, perceived uncertainty about the etiology of pain, and secondary suffering. Discussion Our findings indicate the possible need for increased support for caregivers, including educational interventions targeting pain etiology and assessment, and improved communication with health-care professionals. PMID:27303062

  6. The Impact of Anticipatory Grief on Caregiver Burden in Dementia Caregivers

    ERIC Educational Resources Information Center

    Holley, Caitlin K.; Mast, Benjamin T.

    2009-01-01

    Purpose: Interest in anticipatory grief (AG) has typically focused on terminal diseases such as cancer. However, the issues involved in AG are unique in the context of dementia due to the progressive deterioration of both cognitive and physical abilities. The current study investigated the nature of AG in a sample of dementia caregivers and…

  7. Partners in Dementia Care: A Care Coordination Intervention for Individuals with Dementia and Their Family Caregivers

    ERIC Educational Resources Information Center

    Judge, Katherine S.; Bass, David M.; Snow, A. Lynn; Wilson, Nancy L.; Morgan, Robert; Looman, Wendy J.; McCarthy, Catherine; Kunik, Mark E.

    2011-01-01

    Purpose: This article provides a detailed description of a telephone-based care coordination intervention, Partners in Dementia Care (PDC), for veterans with dementia and their family caregivers. Essential features of PDC included (a) formal partnerships between Veterans Affairs (VA) medical centers and Alzheimer's Association Chapters; (b) a…

  8. Religious Coping in Caregivers of Family Members With Dementia.

    PubMed

    Rathier, Lucille A; Davis, Jennifer Duncan; Papandonatos, George D; Grover, Christine; Tremont, Geoffrey

    2015-12-01

    The degree of depression experienced by caregivers of individuals with dementia was examined in relation to religious coping strategies, religious practice, and spirituality in the framework of the stress and coping model. Caregivers of 191 persons with dementia completed the Religious Coping Scale, self-report measures of religious practices and spirituality, burden, and depression. There was no evidence that any religious coping strategy or religious practice moderated the relationship between caregiving stress and depression. Certain types of religious coping strategies had a direct effect on depression. Higher levels of religious coping working with God were associated with decreased depression, whereas higher levels of religious coping working through God were associated with increased depression. Higher burden, lower overall caregiver health rating, and worse reactions to memory and behavior problems were associated with higher levels of depression. Frequency of prayer and the importance of spirituality were weakly associated with lower levels of depression.

  9. Family Dynamics and Personal Strengths among Dementia Caregivers in Argentina

    PubMed Central

    Elnasseh, Aaliah G.; Trujillo, Michael A.; Peralta, Silvina Victoria; Stolfi, Miriam E.; Morelli, Eliana; Perrin, Paul B.

    2016-01-01

    This study examined whether healthier family dynamics were associated with higher personal strengths of resilience, sense of coherence, and optimism among dementia caregivers in Argentina. Caregivers are usually required to assist individuals with dementia, and family members have typically fulfilled that role. Personal strengths such as resilience, sense of coherence, and optimism have been shown to protect caregivers from some of the negative experiences of providing care, though the family-related variables associated with these personal strengths are largely unknown. Hierarchical multiple regressions investigated the extent to which family dynamics variables are associated with each of the caregiver personal strengths after controlling for demographic and caregiver characteristics. A sample of 105 caregivers from Argentina completed a set of questionnaires during a neurologist visit. Family dynamics explained 32% of the variance in resilience and 39% of the variance in sense of coherence. Greater family empathy and decreased family problems were uniquely associated with higher resilience. Greater communication and decreased family problems were uniquely associated with higher sense of coherence. Optimism was not found to be significantly associated with family dynamics. These results suggest that caregiver intervention research focused on the family may help improve caregiver personal strengths in Argentina and other Latin American countries. PMID:27413574

  10. [Quality of life in dementia, opinions among people with dementia, their professional caregivers, and in literature].

    PubMed

    Gerritsen, D L; Dröes, R M; Ettema, T P; Boelens, E; Bos, J; Meihuizen, L; de Lange, J; Schölzel-Dorenbos, C J M; Hoogeveen, F

    2010-12-01

    Different definitions of quality of life (QOL) are found in the literature. This raised the question which domains are viewed as really important by persons with dementia. In an explorative study the opinions of persons with dementia (community-dwelling and living in nursing homes), were compared to those of professional carers and instruments for QOL in dementia. Data were gathered through interviews, focus groups and literature study. Most QOL-domains mentioned as important by persons with dementia were also acknowledged by carers and in measurement instruments. Some domains, however, were not mentioned by the carers ('sense of aesthetics', 'financial situation', 'being useful' and 'spirituality'), or not selected in the measuring instruments ('security and privacy', 'self-determination and freedom', 'being useful' and 'spirituality'). This indicates differences in perspectives on quality of life between persons with dementia, professional caregivers and researchers. Subsequently it was studied to what degree professionals focus on the QoL-domains that persons with dementia consider essential. Caregivers working on 29 units and 3 day care facilities of 13 nursing homes and in 12 meeting centers filled out a questionnaire (N = 374). They reported to focus at least to some degree on most domains considered important by persons with dementia. However, little attention was paid to the domains 'financial situation' and 'being useful'. Professionals offering daytime activities focused more than 24-hour care staff on 'attachment', 'enjoyment of activities', 'sense of aesthetics', and 'being useful'. This article is a translation and merging of 1) Dröes et al. Quality of life in dementia in perspective; an explorative study of variations in opinions among people with dementia and their professional caregivers, and in literature. Dementia: The International Journal 2006; 5 (4): 533-558, and 2) Gerritsen et al. Differences in perspective: do professional caregivers focus

  11. Use of psychotropic medications by caregivers of elderly patients with dementia: is this a sign of caregiver burden?

    PubMed

    Camargos, Einstein Francisco; Souza, Andrea Brígida; Nascimento, Aline Silva; Morais-E-Silva, Alessandra Cicari; Quintas, Juliana Lima; Louzada, Luciana Lilian; Medeiros-Souza, Patricia

    2012-03-01

    This study evaluated the consumption of psychotropic medications by caregivers of elderly patients with or without dementia. This was a cross-sectional study conducted at all geriatric units in Brasília, Brazil, during a two-month period. Structured interviews were performed with 311 caregivers of people with or without dementia and they completed questionnaires. Among the caregivers, 196 (63%) were caregivers of patients with dementia and 115 (37%) were caregivers of patients without dementia. Forty-four caregivers (14.1%) were taking psychotropic drugs (benzodiazepines or antidepressants), and this usage was more frequent among caregivers of patients with dementia (p<0.01). Twenty-two caregivers of patients with dementia (11.4%) had used sleeping pills after beginning care, compared with only five (4.3%) caregivers of patients without dementia (p<0.01). In conclusion, this study found that caregivers of patients with dementia took psychotropic drugs (benzodiazepines and antidepressants) more frequently than the ones of patients without dementia. PMID:22392108

  12. Caregiver- and Patient-Directed Interventions for Dementia

    PubMed Central

    2008-01-01

    Executive Summary In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry’s newly released Aging at Home Strategy. After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person’s transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report. Please visit the Medical Advisory Secretariat Web site, http://www.health.gov.on.ca/english/providers/program/mas/mas_about.html, to review these titles within the Aging in the Community series. Aging in the Community: Summary of Evidence-Based Analyses Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR) This report features the evidence-based analysis on caregiver- and patient-directed interventions for dementia and is broken down into 4 sections: Introduction Caregiver-Directed Interventions for Dementia Patient-Directed Interventions for Dementia Economic Analysis of Caregiver- and Patient-Directed Interventions for Dementia Caregiver-Directed Interventions for Dementia

  13. Caregiver burden, dementia, and elder abuse in South Korea.

    PubMed

    Lee, Minhong; Kolomer, Stacey R

    2005-01-01

    The purpose of this study is to identify characteristics that would increase the likelihood that a Korean older adult with dementia being cared for by a family caregiver is at risk of being abused. This analysis was based on a sample of 481 primary family caregivers from the data of Comprehensive Study for the Elderly Welfare Policy in Seoul (2003). Multiple regression analysis was used to examine predictors among the demographic characteristics of caregivers and care recipients, the severity of cognitive impairment, functional ability, caregiver burden, and social support for the degree of elder abuse. The degree of elder abuse was significantly associated with caregiver burden, mental impairment, dependency of daily living of care recipient, and use of formal services. PMID:16611617

  14. Personality and Coping among Caregivers of Spouses with Dementia.

    ERIC Educational Resources Information Center

    Hooker, Karen; And Others

    1994-01-01

    Examined personality factors and coping strategies among 50 spouse caregivers of patients diagnosed with Alzheimer's disease or related dementia. Results showed that personality traits explained 60% of variance in emotion-focused coping, 30% of variance in problem-focused coping, and 15% of variance associated with social support coping.…

  15. Wearable Technology to Garner the Perspective of Dementia Family Caregivers

    PubMed Central

    Matthews, Judith T.; Campbell, Grace B.; Hunsaker, Amanda E.; Klinger, Julie; Mecca, Laurel Person; Hu, Lu; Hostein, Sally; Lingler, Jennifer H.

    2015-01-01

    Family caregivers of persons with dementia typically have limited opportunity during brief clinical encounters to describe the dementia-related behaviors and interactions that they find difficult to handle. Lack of objective data depicting the nature, intensity, and impact of these manifestations of the underlying disease further constrains the extent to which strategies recommended by nurses or other health care providers can be tailored to the situation. We describe a prototype wearable camera system used to gather image and voice data from the caregiver’s perspective in a pilot feasibility intervention study conducted with 18 caregiving dyads. Several scenarios are presented that incorporate salient events (i.e., behaviors or interactions deemed difficult by the caregiver or identified as concerning by our team during screening) identified in the resulting video. We anticipate that future wearable camera systems and software will automate screening for salient events, providing new tools for assessment and intervention by nurses. PMID:26468655

  16. Caregiver Burden and Quality of Life of Key Caregivers of Patients with Dementia

    PubMed Central

    Srivastava, Garima; Tripathi, Rakesh Kumar; Tiwari, Sarvada Chandra; Singh, Bhupinder; Tripathi, Shailendra Mohan

    2016-01-01

    Background: Dementia is the most devastating cognitive disorder of the elderly and needs extra attention to care. Therefore, this study was conducted to identify the caregiver burden of dementia key caregivers and their Quality of Life (QOL). Materials and Methods: Sample consisted of purposively selected 24 dementia key caregivers fulfilling the inclusion criteria from the in-patient of the Department of Geriatric Mental Health, King George's Medical University, Lucknow, Uttar Pradesh, India. Zarit Burden Interview and World Health Organization QOL-BREF were administered. Mean, standard deviation, t-test, Chi-square with Yate's correction were used to analyze the data. Results: All key caregivers felt mild to moderate level of burden. Gender-wise significant difference was found on burden area of expectation (P < 0.05). Mean scores on physical, psychological, social relationship, and environmental QOL were found to be on lower side. A negative correlation was found between burden and QOL. Conclusion: Professional help and supportive psychotherapy can be provided to the key caregivers of dementia patients to reduce their burden, strengthen the coping skill and thus improve their QOL. PMID:27114625

  17. The emotional ramifications of unmet need in dementia caregiving.

    PubMed

    Gaugler, Joseph E; Anderson, Keith A; Leach, M S W Corinne R; Smith, Charles D; Schmitt, Frederick A; Mendiondo, Marta

    2004-01-01

    Using a unique measure of unmet need that taps into several dimensions of informal long-term care, the present study included data from 694 informal caregivers of persons suffering from dementia at different times in the caregiving career (e.g., at home, following institutionalization, following the death of the care recipient). Multivariate regression models found that unmet need for either confidante or formal support had key implications for caregivers' emotional distress in each of the care situations. The findings suggest that conceptual models should incorporate unmet need as a viable predictor of caregiving outcomes and that assessment of unmet need may provide guidance in the development of more refined psychosocial and community-based intervention protocols. PMID:15633946

  18. The Sociocultural Context of Caregiving Experiences for Vietnamese Dementia Family Caregivers

    PubMed Central

    Nguyen, Kim Hanh; Dao, To Nhu; Vu, Phuoc; Arean, Patricia; Hinton, Ladson

    2015-01-01

    The goal of this qualitative study was to describe the beliefs and experiences of Vietnamese caregivers caring for a family member with dementia and to elicit their ideas about promising interventions. We recruited 10 caregivers from support groups, the Alzheimer’s Association, and local community-based organizations in Northern California. We conducted semi-structured in-depth interviews with all caregivers, as well as a focus group to obtain ideas about supportive strategies. Several themes emerged from the data: (1) Filial piety was influential in caregiving; (2) A sense of loss/grief or trauma was pervasive; and (3) Caregivers had clear sources of stress and sources of support. An overarching theme underlying these three topics was that cultural beliefs, values, and expectations impacted the caregiving experience. Suggestions for promising interventions included education, language-congruent and/or telephone support groups, case management, inclusion of the care recipient in the intervention, and importance of credibility of the intervention. It also may be valuable to include an understanding of cultural values and promotion of spirituality and religion as key components. Findings highlight targets for dementia caregiver interventions to reduce burden and distress in an understudied population. PMID:26617956

  19. The Value of Telephone Support Groups among Ethnically Diverse Caregivers of Persons with Dementia

    ERIC Educational Resources Information Center

    Bank, Adam L.; Arguelles, Soledad; Rubert, Mark; Eisdorfer, Carl; Czaja, Sara J.

    2006-01-01

    Purpose: Dementia caregiving is a rapidly growing public health problem. Logistical problems prevent many caregivers from utilizing available interventions. This article provides a demonstration of the usefulness of technology for conducting telephone-based support groups in ethnically diverse dementia caregivers. Design and Methods: Participants…

  20. Families Who Care: Assisting African American and Rural Caregivers Dealing with Dementia. A Training Manual.

    ERIC Educational Resources Information Center

    Coogle, Constance L., Ed.; Finley, Ruth B., Ed.

    Although this training manual was developed as a tool for trainers of African American and rural family caregivers of elders with dementia, it can easily be adapted for trainers of caregivers (both formal and informal) of persons other than those with dementia. The first section educates potential trainers about dementia, rural issues, ethnic…

  1. Early Community-Based Service Utilization and Its Effects on Institutionalization in Dementia Caregiving

    ERIC Educational Resources Information Center

    Gaugler, Joseph E.; Kane, Robert L.; Kane, Rosalie A.; Newcomer, Robert

    2005-01-01

    Purpose: The present study attempts to determine whether utilizing community-based long-term-care services early in the dementia caregiving career delays time to nursing home placement (adjusting for severity of dementia). Design and Methods: With a reliance on data from 4,761 dementia caregivers recruited from eight catchment areas in the United…

  2. Communicating through caregiver singing during morning care situations in dementia care.

    PubMed

    Hammar, Lena Marmstål; Emami, Azita; Engström, Gabriella; Götell, Eva

    2011-03-01

    It is well known that persons with dementia (PWD) have problems expressing and interpreting communication, making interaction with others difficult. Interaction between PWD and their caregivers is crucial, and several strategies have been investigated to facilitate communication during caregiving. Music therapeutic caregiving (MTC)--when caregivers sing for or together with PWD during caregiving activities--has been shown to enhance communication for PWD, evoking more vitality and positive emotions. The aim of this study was to describe how PWD and their caregivers express verbal and nonverbal communication and make eye contact during the care activity 'getting dressed', during morning care situations without and with MTC. Findings revealed that during the situations without MTC, the caregivers led the dressing procedure with verbal instructions and body movements and seldom invited the PWD to communicate or participate in getting dressed. Patterns in responses to caregivers' instructions included both active and compliant responses and reactions that were resistant and aggressive, confused, and disruptive. In contrast to the 'ordinary' morning care situation, during MTC, the caregivers seemed interested in communicating with the PWD and solicited their mutual engagement. Although verbal communication consisted of singing about things other than getting dressed, e.g. dancing, love, sailing, God, the PWD mostly responded to caregivers in a composed manner, by being active, compliant, and relaxed, though some were also resistant or incongruent. The authors conclude that MTC could be a way for PWD and their caregivers to successfully interact and co-operate during caring situations, as it seems to evoke enhanced communication for both partners in this context.

  3. Differences between family caregivers and people with dementia in recognizing the difficulties encountered in the lives of people with dementia.

    PubMed

    Miyamura, Toshihiro

    2016-01-01

    Objectives Dementia brings new difficulties in the lives of people with this disorder. It is important that family caregivers accurately recognize these difficulties to help their family members live fulfilling lives. Based on information gathered from people with dementia, family caregivers, and nurses providing medical care to this population, this study compared the differences in perspectives related to the difficulties associated with dementia between the family member with dementia and the family caregiver.Methods The primary participants in this investigation were 106 people with dementia and their family caregivers. Participants with dementia were 65 years and older who were receiving home care in Tokyo. Participants were interviewed about their difficulties while family caregivers completed a questionnaire with basic information regarding people with dementia. Additionally, the nurse providing medical care to the person with dementia completed a questionnaire about the medical care. In this study, difficulties in the lives of people with dementia was defined as impediments in life due to dementia. Difficulties were classified according to 12 symptoms based on responses that appeared frequently in the interviews. The 12 symptoms were pain, hallucinations/delusions, aggressive behavior, memory loss, disorientation, communication impairment, anxiety/confusion, toileting problems, gait disturbance, dietary deficiency, sleep disorder, and social withdrawal. Additional information was gathered and analyzed that included diagnosis and severity of dementia, need for long-term care, core symptoms of dementia, behavioral and psychological symptoms of dementia (BPSD), and delirium.Results The family caregiver's perspective about the difficulties encountered in the life of their family member with dementia was often different from the perspective of the associated family member. No family caregivers recognized that pain was a difficulty, and there were only a

  4. Needs of caregivers of the patients with dementia.

    PubMed

    Rosa, E; Lussignoli, G; Sabbatini, F; Chiappa, A; Di Cesare, S; Lamanna, L; Zanetti, O

    2010-01-01

    This study was conducted to isolate the needs families express both for medical and psychological care, and for educational and social support in 112 caregivers of patients affected by moderate to severe dementia (mini mental state examination=MMSE score: 9+/-7) consecutively recruited at our Memory Clinic, to develop approaches as individualized as possible. The medical needs caregivers express are mainly relative to a better knowledge of the disease (78%) and the exact diagnosis (65%); the education-related needs are mainly relative to the acquisition of communicational skills (83%) and the optimal handling of cognitive (77%) and behavioral disorders (81%); the psychological ones mainly concern the area of assistance induced emotional stress management (37%) and the elaboration of feelings such as anxiety, rage and guilt (49%). Variance analysis shows a correlation between emotional caregivers' needs and the subjective and objective burdens they carry. Despite the attention to the role families play in caring for patients with a diagnoses of moderate to severe dementia, caregivers still express low levels of illness-consciousness and high levels of psychological discomfort. A lot more ought to be done in order to provide better information about the disease, about appropriate cognitive and behavioral disorder management skills, and about viable psychological support.

  5. Unmet Needs of Caregivers of Patients Referred to a Dementia Care Program

    PubMed Central

    Jennings, Lee A.; Reuben, David B.; Evertson, Leslie Chang; Serrano, Katherine S.; Ercoli, Linda; Grill, Joshua; Chodosh, Joshua; Tan, Zaldy; Wenger, Neil S.

    2014-01-01

    Background/Objectives Caregiver strain and low self-efficacy for managing dementia-related problems are common among those caring for patients with dementia, but the level of unmet need and relation to provider type has not been well characterized. Design Cross-sectional observational cohort Setting Urban academic medical center Participants Caregivers of community-dwelling adults with dementia referred to the program Measurements Caregivers were surveyed and completed the Patient Health Questionnaire (PHQ-9) about themselves, the Modified Caregiver Strain Index, the Neuropsychiatric Inventory Questionnaire, which measures patient symptom severity and related caregiver distress, and a 9-item caregiver self-efficacy scale developed for the study. Results Of 307 patient and caregiver dyads surveyed over a one year period, 32% of caregivers reported confidence in managing dementia-related problems, 19% knew how to access community services to help provide care, and 28% agreed the patient’s provider helped them work through dementia care problems. Thirty-eight percent reported high levels of caregiver strain, and 15% reported moderate to severe depressive symptoms. Caregivers of patients referred by geriatricians more often reported having a healthcare professional to help work through dementia care problems than those referred by internists, family physicians, or other specialists, but self-efficacy did not differ. Low caregiver self-efficacy was associated with higher caregiver strain, more caregiver depressive symptoms, and caring for a patient with more severe behavioral symptoms. Conclusion Most caregivers perceived inadequate support from the patient’s provider in managing dementia-related problems, reported strain, and had low confidence in managing caregiving. New models of care are needed to address the complex care needs of patients with dementia and their caregivers. PMID:25688604

  6. The meanings caregivers ascribe to dementia-related changes in care recipients: a meta-ethnography.

    PubMed

    Lindauer, Allison; Harvath, Theresa A

    2015-01-01

    The number of individuals with dementia is increasing dramatically around the world, and because of this growth, an increase in the number of caregivers has occurred as well. Caregiving is often associated with negative outcomes (e.g., burden, depression, impaired physical health). These problems persist although much effort has been put into understanding caregiver strain. Some work has addressed the meanings caregivers ascribe to dementia-related changes, which may provide a better understanding of caregiver health and well-being. Most of this work is qualitative, but no synthesis of the literature addressing caregiver meanings of dementia-related changes has been found. The purpose of the current meta-ethnographic synthesis is to explore and interpret the literature addressing the meanings that caregivers give to dementia-related changes in their care recipients. An interpretation that incorporates findings in relation to elder mistreatment is offered. Implications for nursing care and research are discussed.

  7. Spousal Caregiver Perspectives on a Person-Centered Social Program for Partners With Dementia.

    PubMed

    Han, Areum; Radel, Jeff

    2016-09-01

    This qualitative study explored spousal caregiver perspectives on the experience and impact of a person-centered social program for partners with dementia. Interviews with 5 caregivers and the spouses with dementia were conducted 7 to 8 months after the program ended to explore the sustained impact of the program. Interpretative phenomenological analysis was used to support in-depth exploration of interviews. Three themes emerged including benefits of the program for caregivers, initial expectations and later perspectives of caregivers about the program, and conflicting values and perspectives between caregivers and the spouses. These findings suggest participation in a person-centered social program by people with dementia benefits their caregivers, by meeting the caregivers' desire for their spouses to increase social participation and engagement in meaningful activities. Participation in the program provided a sustained benefit to one couple in particular, by encouraging the caregiver to resume arranging activities the couple once enjoyed but now had difficulty pursuing.

  8. Acceptability and Feasibility Results of a Strength-Based Skills Training Program for Dementia Caregiving Dyads

    ERIC Educational Resources Information Center

    Judge, Katherine S.; Yarry, Sarah J.; Orsulic-Jeras, Silvia

    2010-01-01

    Purpose: The current article provides an in-depth description of a dyadic intervention for individuals with dementia and their family caregivers. Using a strength-based approach, caregiving dyads received skills training across 5 key areas: (a) education regarding dementia and memory loss, (b) effective communication, (c) managing memory loss, (d)…

  9. Distance Caregivers of People with Alzheimer's Disease and Related Dementia: A Phenomenological Study

    ERIC Educational Resources Information Center

    Edwards, Megan

    2010-01-01

    The population of distance caregivers of people with dementia/Alzheimer's disease has not been extensively researched. This research study focused on exploring the lived experience of people caring for someone with dementia/Alzheimer's disease from a distance (defined as 2 or more hours away) to help shed light on this caregiving population. Ten…

  10. Understanding Discrepancy in Perceptions of Values: Individuals with Mild to Moderate Dementia and Their Family Caregivers

    ERIC Educational Resources Information Center

    Reamy, Allison M.; Kim, Kyungmin; Zarit, Steven H.; Whitlatch, Carol J.

    2011-01-01

    Purpose of the Study: We explore discrepancies in perceptions of values and care preferences between individuals with dementia (IWDs) and their family caregivers. Design and Methods: We interviewed 266 dyads consisting of an individual with mild to moderate dementia and his or her family caregiver to determine IWDs' beliefs for 5 values related to…

  11. Values and Preferences of Individuals with Dementia: Perceptions of Family Caregivers over Time

    ERIC Educational Resources Information Center

    Reamy, Allison M.; Kim, Kyungmin; Zarit, Steven H.; Whitlatch, Carol J.

    2013-01-01

    Purpose of the Study: Cross-sectional evidence indicates that family caregivers reporting on the importance of daily care values and preferences of individuals with mild-to-moderate dementia consistently report less importance than individuals with dementia (IWDs) self-report. Discrepancy is primarily associated with caregivers' beliefs about…

  12. Family Caregivers' Experiences of Caring for a Relative With Younger Onset Dementia: A Qualitative Systematic Review.

    PubMed

    Cabote, Christy Joy; Bramble, Marguerite; McCann, Damhnat

    2015-08-01

    Family caregiving for people with younger onset dementia affects everyone in the family unit. This article presents findings of a qualitative systematic review exploring the experiences of family caregivers of persons with younger onset dementia. A systematic search resulted in the inclusion of five relevant articles, and two groups within the family unit were identified-child caregivers and adult and spousal caregivers. Using the thematic synthesis approach, five themes emerged: dementia damage, grief for loss of relationship, changes in family roles, positive and negative impacts of family caregiving, and transition to formal care. The review findings support increasing evidence that despite the stress of caring for a person with dementia damage, family members have the capacity to cope, adapt, and grow through their experiences. Nurses can assist families to identify their unique strengths and enhance family resiliency so they can navigate the "lonely road" of younger onset dementia.

  13. Family Caregivers' Experiences of Caring for a Relative With Younger Onset Dementia: A Qualitative Systematic Review.

    PubMed

    Cabote, Christy Joy; Bramble, Marguerite; McCann, Damhnat

    2015-08-01

    Family caregiving for people with younger onset dementia affects everyone in the family unit. This article presents findings of a qualitative systematic review exploring the experiences of family caregivers of persons with younger onset dementia. A systematic search resulted in the inclusion of five relevant articles, and two groups within the family unit were identified-child caregivers and adult and spousal caregivers. Using the thematic synthesis approach, five themes emerged: dementia damage, grief for loss of relationship, changes in family roles, positive and negative impacts of family caregiving, and transition to formal care. The review findings support increasing evidence that despite the stress of caring for a person with dementia damage, family members have the capacity to cope, adapt, and grow through their experiences. Nurses can assist families to identify their unique strengths and enhance family resiliency so they can navigate the "lonely road" of younger onset dementia. PMID:25724671

  14. A review of the psychobiology of dementia caregiving: a focus on resilience factors.

    PubMed

    Harmell, Alexandrea L; Chattillion, Elizabeth A; Roepke, Susan K; Mausbach, Brent T

    2011-06-01

    The recent aging trend in the United States has resulted in exponential growth in the number of informal dementia caregivers. Caring for a family member with dementia has been associated with negative health outcomes that are likely related to physiologic changes resulting from stress. However, caregiving is not always associated with health morbidity. In this review, we highlight resilience factors that appear to have a beneficial relationship with health outcomes. Specifically, we highlight 11 studies that examined the relationship of one of three broad resilience domains (personal mastery, self-efficacy, and coping style) to caregiver health outcomes. Our main findings were that higher levels of personal mastery and self-efficacy, and increased use of positive coping strategies appear to have a protective effect on various health outcomes in dementia caregivers. Continued research is warranted to help guide prospective directions for caregiver interventions focusing on increasing caregiver resilience and the corresponding impact on caregiver health.

  15. The Educational and Supportive Mobile Application for Caregivers of Dementia People.

    PubMed

    Cho, Sumi; Lee, Je Hyeok; Kim, Il Kon; Kim, Min Gyu; Sik, Kim Young; Lee, Eunjoo

    2016-01-01

    This paper presents a healthcare mobile app for caregivers of dementia patients. The app had been implemented to run on wearable and mobile devices, and it helps caregivers to take dementia test, review dementia test history, and search location of public health centers in the vicinity. The collective purpose of these features is to provide meaningful healthcare services to elderly at risk of dementia. The app uses the time and change (T&C) test for screening for dementia. The app was tried for its validity and usability for the intended purpose, and participating users were surveyed to evaluate its usefulness. PMID:27332475

  16. Attitudes toward the Diagnosis and Disclosure of Dementia among Family Caregivers and Primary Care Physicians

    ERIC Educational Resources Information Center

    Connell, Cathleen M.; Boise, Linda; Stuckey, John C.; Holmes, Sara B.; Hudson, Margaret L.

    2004-01-01

    Purpose: This study examined attitudes of caregivers and physicians toward assessing and diagnosing dementia, with an emphasis on how a diagnosis is disclosed. Design and Methods: Seventeen focus group interviews were conducted with caregivers or physicians from three sites; 52 caregivers participated in nine interviews (three each at the three…

  17. Effects of Social Support and Coping of Family Caregivers of Older Adults with Dementia in Taiwan

    ERIC Educational Resources Information Center

    Huang, Chiung-Yu; Musil, Carol M.; Zauszniewski, Jaclene A.; Wykle, May L.

    2006-01-01

    The purpose of this study was to explore the relationship of demographic characteristics, contextual factors, social support, and coping on health outcomes of family caregivers of older adults with dementia in Taiwan. This study also examined caregiving stress and whether support moderated the effects of caregiver stress on health. Lazarus and…

  18. A DBT Skills Training Group for Family Caregivers of Persons with Dementia

    ERIC Educational Resources Information Center

    Drossel, Claudia; Fisher, Jane E.; Mercer, Victoria

    2011-01-01

    A Dialectical Behavior Therapy Skills training manual (DBT Skills) was adapted for use with caregivers of individuals with dementia. Implementation occurred in a community clinic with a heterogeneous caregiver group at risk for elder abuse. Sixteen caregivers completed the 9-week group. The results point to improved psychosocial adjustment,…

  19. Desire to Institutionalize a Relative with Dementia: Quality of Premorbid Relationship and Caregiver Gender

    ERIC Educational Resources Information Center

    Winter, Laraine; Gitlin, Laura N.; Dennis, Marie

    2011-01-01

    The quality of the relationship between individuals with dementia and their family caregivers has an impact on important clinical outcomes for both. It is unclear, however, how quality of relationship (QoR) affects caregivers' desire to place their relative in a nursing home. We examined the association of QoR with caregivers' desire to…

  20. Portraits of Caregivers of End-Stage Dementia Patients Receiving Hospice Care

    ERIC Educational Resources Information Center

    Sanders, Sara; Butcher, Howard K.; Swails, Peggy; Power, James

    2009-01-01

    The purpose of this study was to investigate how caregivers respond to the end stages of dementia with the assistance from hospice. Data were collected from 27 family caregivers over the course of 10 months, with each caregiver being interviewed up to 4 times during the time that the patient received hospice care. Chart review data were also…

  1. Usability of a Wearable Camera System for Dementia Family Caregivers.

    PubMed

    Matthews, Judith T; Lingler, Jennifer H; Campbell, Grace B; Hunsaker, Amanda E; Hu, Lu; Pires, Bernardo R; Hebert, Martial; Schulz, Richard

    2015-01-01

    Health care providers typically rely on family caregivers (CG) of persons with dementia (PWD) to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs: 3 males, 6 females, 67.00 ± 14.95 years; PWDs: 2 males, 7 females, 80.00 ± 3.81 years, MMSE 17.33 ± 8.86) who recorded 79 salient events over a combined total of 140 hours of data capture, from 3 to 7 days of wear per CG. Prior to using the system, CGs assessed its benefits to be worth the invasion of privacy; post-wear privacy concerns did not differ significantly. CGs rated the system easy to learn to use, although cumbersome and obtrusive. Few negative reactions by PWDs were reported or evident in resulting video. Our findings suggest that CGs can and will wear a camera system to reveal their daily caregiving challenges to health care providers. PMID:26288888

  2. Usability of a Wearable Camera System for Dementia Family Caregivers

    PubMed Central

    Matthews, Judith T.; Lingler, Jennifer H.; Campbell, Grace B.; Hunsaker, Amanda E.; Hu, Lu; Pires, Bernardo R.; Hebert, Martial; Schulz, Richard

    2015-01-01

    Health care providers typically rely on family caregivers (CG) of persons with dementia (PWD) to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs: 3 males, 6 females, 67.00 ± 14.95 years; PWDs: 2 males, 7 females, 80.00 ± 3.81 years, MMSE 17.33 ± 8.86) who recorded 79 salient events over a combined total of 140 hours of data capture, from 3 to 7 days of wear per CG. Prior to using the system, CGs assessed its benefits to be worth the invasion of privacy; post-wear privacy concerns did not differ significantly. CGs rated the system easy to learn to use, although cumbersome and obtrusive. Few negative reactions by PWDs were reported or evident in resulting video. Our findings suggest that CGs can and will wear a camera system to reveal their daily caregiving challenges to health care providers. PMID:26288888

  3. A pilot study examining the awareness, attitude, and burden of informal caregivers of patients with dementia.

    PubMed

    Qadir, Farah; Gulzar, Wajiha; Haqqani, Sabahat; Khalid, Amna

    2013-01-01

    Pakistan is 1 of 5 countries with the highest projected increase in prevalence of dementia in the Asia Pacific region (Access Economic, 2006), where there is a lack of structured support network for caregivers in general and for dementia caregivers in specific. The caregivers and other related individuals predominantly rely on traditional familial support for caregiving. This approach places immense burdens on the familial caregivers (Shaji, 2009). In Pakistan, there is paucity of research evidence on care of patients with dementia and the needs of caregivers dealing with such patients. This study explores awareness among caregivers, their attitudes toward family members suffering from dementia, and their experience of burden. In-depth interviews were conducted with 12 caregivers of patients diagnosed with dementia in Rawalpindi/Islamabad Pakistan. There was a considerable lack of awareness about dementia as an illness among the caregivers. They reported a conflict between emotional and religious commitments to nurture older adult relatives and their experience of psychological, physical, and economic burden, resulting in occasional episodes of carelessness and violence toward them. The study indicated that women, particularly those who were employed outside of the home, reported higher levels of stress. It is suggested that support from extended family in all forms was perceived as a concrete form of stress relief by the primary caregiver. The findings of this study indicate that the social and financial burden of dementia on families of caregivers in Pakistan may be exacerbated if they do not have support. This indicates a need for multipronged intervention from both government and nongovernment organizations, as well as the community, to develop programs for caregivers that are nested within the cultural context of filial piety in Pakistan. These strategies should also be gender sensitive, giving priority to more at-risk groups. PMID:24579270

  4. Predictive Factors for the Uptake of Coping Strategies by Spousal Dementia Caregivers: A Systematic Review.

    PubMed

    Roche, Lauren; MacCann, Carolyn; Croot, Karen

    2016-01-01

    An understanding of spousal dementia caregivers' coping strategies and their predictive factors is imperative for caregivers' well-being. Although several reviews have explored the relationship between coping strategies and outcomes, no review has investigated factors that predict caregivers' use of one type of coping strategy over another. The current review aimed to identify factors that predict caregivers' coping strategies. Within this, we attempted to identify caregivers who are more likely to adopt dysfunctional coping strategies and be at risk of adverse outcomes. Several electronic databases were systematically searched. Twenty-one studies were eligible for review, describing 18 caregiver and care-recipient factors related to the 3 coping strategies. No factors were classified "predictive," however, 16 factors were "potentially predictive." Younger, more highly educated caregivers with greater emotional supports and knowledge of dementia were associated with solution-focused coping. Younger, less educated caregivers were associated with emotional support/acceptance-based coping strategies. Whereas nonwhite caregivers with less emotional supports caregiving for persons with more behavioral problems were associated with dysfunctional coping strategies. Enhancing caregiver self-efficacy, knowledge of dementia, improving social supports, linking to support groups, managing behavioral problems, as well as coaching adaptive coping strategies while flagging caregivers at risk for dysfunctional coping may improve outcomes for caregivers. PMID:26485497

  5. Predictive Factors for the Uptake of Coping Strategies by Spousal Dementia Caregivers: A Systematic Review.

    PubMed

    Roche, Lauren; MacCann, Carolyn; Croot, Karen

    2016-01-01

    An understanding of spousal dementia caregivers' coping strategies and their predictive factors is imperative for caregivers' well-being. Although several reviews have explored the relationship between coping strategies and outcomes, no review has investigated factors that predict caregivers' use of one type of coping strategy over another. The current review aimed to identify factors that predict caregivers' coping strategies. Within this, we attempted to identify caregivers who are more likely to adopt dysfunctional coping strategies and be at risk of adverse outcomes. Several electronic databases were systematically searched. Twenty-one studies were eligible for review, describing 18 caregiver and care-recipient factors related to the 3 coping strategies. No factors were classified "predictive," however, 16 factors were "potentially predictive." Younger, more highly educated caregivers with greater emotional supports and knowledge of dementia were associated with solution-focused coping. Younger, less educated caregivers were associated with emotional support/acceptance-based coping strategies. Whereas nonwhite caregivers with less emotional supports caregiving for persons with more behavioral problems were associated with dysfunctional coping strategies. Enhancing caregiver self-efficacy, knowledge of dementia, improving social supports, linking to support groups, managing behavioral problems, as well as coaching adaptive coping strategies while flagging caregivers at risk for dysfunctional coping may improve outcomes for caregivers.

  6. What is known about dementia care recipient violence and aggression against caregivers?

    PubMed

    Wharton, Tracy C; Ford, Bryan K

    2014-01-01

    Aggression is a known behavior in dementia, but there is little in the literature about risk to home-based caregivers in situations where severe aggression is present. This article examines this issue with a focus on what is known and where further research is needed. Rates of severe aggression by dementia care recipients against caregivers are estimated at greater than 20%, and may be the strongest predictor of nursing home placement. Measures containing both assessment of behavior and objective measures of caregiver trauma are needed, along with interventions aimed at educating and protecting caregivers while respecting communicative properties of behavior. PMID:24593178

  7. Perceived Challenges in Dementia Care by Vietnamese Family Caregivers and Care Workers in South Australia.

    PubMed

    Xiao, Lily Dongxia; Habel, Lesley; De Bellis, Anita

    2015-09-01

    The majority of Vietnamese Australians migrated to Australia as refugees to escape a war and this unique migration background may affect their ability to access and utilize healthcare services in Australia. Inability to utilize dementia services is associated with higher levels of caregiver burden, higher rates of morbidities and mortality and hospitalization. The aim of the study was to explore the perceived challenges of dementia care from Vietnamese family caregivers and Vietnamese care workers. Gadamer's philosophical hermeneutics was used to interpret and describe the experiences of the participants. Data were collected from in-depth interviews with six Vietnamese family caregivers and a focus group with Vietnamese care workers using purposive sampling. Participants were recruited from a Vietnamese community care organization in South Australia. Five themes were identified from the data analysis namely: (1) a need for culturally and linguistically appropriate dementia education programs; (2) a willingness and unwillingness to seek help; (3) poor knowledge of health care service availability related to dementia; (4) the effect of language barrier in accessing services; and (5) the main sources of services utilized. The study revealed that Vietnamese family caregivers and Vietnamese care workers held different views on the association of stigma with dementia. Findings also revealed factors that impacted accessing and utilizing dementia services. These findings facilitate a more comprehensive understanding of Vietnamese family caregivers' needs and have implications for developing individualized support for family caregivers and for consumer-directed dementia services in Australia.

  8. Perceived Challenges in Dementia Care by Vietnamese Family Caregivers and Care Workers in South Australia.

    PubMed

    Xiao, Lily Dongxia; Habel, Lesley; De Bellis, Anita

    2015-09-01

    The majority of Vietnamese Australians migrated to Australia as refugees to escape a war and this unique migration background may affect their ability to access and utilize healthcare services in Australia. Inability to utilize dementia services is associated with higher levels of caregiver burden, higher rates of morbidities and mortality and hospitalization. The aim of the study was to explore the perceived challenges of dementia care from Vietnamese family caregivers and Vietnamese care workers. Gadamer's philosophical hermeneutics was used to interpret and describe the experiences of the participants. Data were collected from in-depth interviews with six Vietnamese family caregivers and a focus group with Vietnamese care workers using purposive sampling. Participants were recruited from a Vietnamese community care organization in South Australia. Five themes were identified from the data analysis namely: (1) a need for culturally and linguistically appropriate dementia education programs; (2) a willingness and unwillingness to seek help; (3) poor knowledge of health care service availability related to dementia; (4) the effect of language barrier in accessing services; and (5) the main sources of services utilized. The study revealed that Vietnamese family caregivers and Vietnamese care workers held different views on the association of stigma with dementia. Findings also revealed factors that impacted accessing and utilizing dementia services. These findings facilitate a more comprehensive understanding of Vietnamese family caregivers' needs and have implications for developing individualized support for family caregivers and for consumer-directed dementia services in Australia. PMID:25935206

  9. Take up the caregiver's burden: stories of care for urban African American elders with dementia.

    PubMed

    Fox, K; Hinton, W L; Levkoff, S

    1999-12-01

    This pilot study uses an anthropological gaze to analyze transcripts of extended in-home interviews among a set of ten caregivers of African-American elders with dementia. How are race and ethnicity made to matter in the recognition of, the meaning-making around and the responses to dementing illness among a sample of African-American caregivers? The essay contrasts prevailing cultural representations of African-American caregiver burden with caregiver interview data. What we find is that current constructs which consistently demonstrate "lesser burden" among African-American caregivers compared with Whites may not adequately capture these caregivers' experiences. Interpretations of experiences, meanings of "burden" and the logic of symptoms in the illness narratives generated by these African-American caregivers of elders with dementia require attention to the embodiment of large scale sociopolitical and historical forces like residential, educational and occupational segregation, institutional racism, and economic exploitation over the life course.

  10. Take up the caregiver's burden: stories of care for urban African American elders with dementia.

    PubMed

    Fox, K; Hinton, W L; Levkoff, S

    1999-12-01

    This pilot study uses an anthropological gaze to analyze transcripts of extended in-home interviews among a set of ten caregivers of African-American elders with dementia. How are race and ethnicity made to matter in the recognition of, the meaning-making around and the responses to dementing illness among a sample of African-American caregivers? The essay contrasts prevailing cultural representations of African-American caregiver burden with caregiver interview data. What we find is that current constructs which consistently demonstrate "lesser burden" among African-American caregivers compared with Whites may not adequately capture these caregivers' experiences. Interpretations of experiences, meanings of "burden" and the logic of symptoms in the illness narratives generated by these African-American caregivers of elders with dementia require attention to the embodiment of large scale sociopolitical and historical forces like residential, educational and occupational segregation, institutional racism, and economic exploitation over the life course. PMID:10647946

  11. The Effect of a Personalized Dementia Care Intervention for Caregivers From Australian Minority Groups.

    PubMed

    Xiao, Lily Dongxia; De Bellis, Anita; Kyriazopoulos, Helena; Draper, Brian; Ullah, Shahid

    2016-02-01

    Most caregiver interventions in a multicultural society are designed to target caregivers from the mainstream culture and exclude those who are unable to speak English. This study addressed the gap by testing the hypothesis that personalized caregiver support provided by a team led by a care coordinator of the person with dementia would improve competence for caregivers from minority groups in managing dementia. A randomised controlled trial was utilised to test the hypothesis. Sixty-one family caregivers from 10 minority groups completed the trial. Outcome variables were measured prior to the intervention, at 6 and 12 months after the commencement of trial. A linear mixed effect model was used to estimate the effectiveness of the intervention. The intervention group showed a significant increase in the caregivers' sense of competence and mental components of quality of life. There were no significant differences in the caregivers' physical components of quality of life.

  12. Personal Strengths and Health Related Quality of Life in Dementia Caregivers from Latin America

    PubMed Central

    Trapp, Stephen K.; Perrin, Paul B.; Aggarwal, Richa; Peralta, Silvina Victoria; Stolfi, Miriam E.; Morelli, Eliana; Peña Obeso, Leticia Aracely; Arango-Lasprilla, Juan Carlos

    2015-01-01

    The research literature has begun to demonstrate associations between personal strengths and enhanced psychosocial functioning of dementia caregivers, but these relationships have not been examined in the context of dementia caregivers in Latin America. The present study examined whether personal strengths, including resilience, optimism, and sense of coherence, were associated with mental and physical health related quality of life (HRQOL) in 130 dementia caregivers in Mexico and Argentina. Structural equation modeling found that the personal strengths collectively accounted for 58.4% of the variance in caregiver mental HRQOL, and resilience, sense of coherence, and optimism each had unique effects. In comparison, the personal strengths together accounted for 8.9% of the variance in caregiver physical HRQOL, and only sense of coherence yielded a unique effect. These results underscore the need to construct and disseminate empirically supported interventions based in part on important personal strengths, particularly sense of coherence, for this underrepresented group. PMID:26160998

  13. Impaired autonomic nervous system activity during sleep in family caregivers of ambulatory dementia patients in Japan.

    PubMed

    Sakurai, Shihomi; Onishi, Joji; Hirai, Makoto

    2015-01-01

    The number of dementia patients requiring care is rapidly increasing in Japan. Consequently, a large percentage of family members, including spouses and children of those with dementia, are assuming the role of primary caregiver. Many caregivers develop health problems including sleep disorders. Some report poor quality of sleep even when sleep duration is normal. In the present study, we used actigraphy and heart rate variability spectral analysis to assess autonomic nervous system activity and quality of sleep in family caregivers of people with ambulatory dementia. The 20 caregivers who participated in our study exhibited significantly higher levels of sympathetic nervous system activity during sleep than noncaregivers. This abnormal activity was most prominent during the first half of the sleep period and was not related to overall sleep duration. We propose that relaxation is inhibited during the first half of the sleep period in this caregiver population. This may be due to increased stress, as caregivers of people with ambulatory dementia may worry about their patients waking and wandering at night, potentially injuring themselves. Our findings indicate a need for increased support for caregivers of people with dementia, including the assessment and treatment of sleep disorders. PMID:25504947

  14. The attitude of Japanese family caregivers toward the elderly with dementia.

    PubMed

    Yamamoto-Mitani, N; Tamura, M; Deguchi, Y; Ito, K; Sugishita, C

    2000-10-01

    This research examined family caregivers' attitudes toward their elderly relatives living with dementia. A convenience sample of fifty-nine Japanese caregivers was used. Caregiver attitudes were investigated multi-dimensionally (negative attitude, attitude of acceptance, and attitude of active interaction) using a questionnaire developed specifically for this study. The dimensions did not correlate with one another but were associated with different caregiver/elderly characteristics: i.e., negative attitude with short stay use, length of time caregivers and elderly relatives were living together and problem behaviors; attitude of acceptance with sleeping pill use and the type of relationship; and attitude of active interaction with dementia diagnosis. The results have implications for nurses in facilitating constructive caregiver attitudes. PMID:10785532

  15. The attitude of Japanese family caregivers toward the elderly with dementia.

    PubMed

    Yamamoto-Mitani, N; Tamura, M; Deguchi, Y; Ito, K; Sugishita, C

    2000-10-01

    This research examined family caregivers' attitudes toward their elderly relatives living with dementia. A convenience sample of fifty-nine Japanese caregivers was used. Caregiver attitudes were investigated multi-dimensionally (negative attitude, attitude of acceptance, and attitude of active interaction) using a questionnaire developed specifically for this study. The dimensions did not correlate with one another but were associated with different caregiver/elderly characteristics: i.e., negative attitude with short stay use, length of time caregivers and elderly relatives were living together and problem behaviors; attitude of acceptance with sleeping pill use and the type of relationship; and attitude of active interaction with dementia diagnosis. The results have implications for nurses in facilitating constructive caregiver attitudes.

  16. Families Who Care: Assisting African American and Rural Caregivers Dealing with Dementia. A Replication Plan.

    ERIC Educational Resources Information Center

    Coogle, Constance L., Ed.; Finley, Ruth B., Ed.

    This Replication Plan describes an Administration on Aging funded Project, "Assisting Caregivers of Black and Rural Elders with Dementia: Progressive Training through Trusted Resources." The project directly developed the capacities of trusted community leaders (n=69) who served as trainers of African American and rural family caregivers (n=200)…

  17. A Measure of Subjective Burden for Dementia Care: The Caregiving Difficulty Scale Intellectual Disability

    ERIC Educational Resources Information Center

    McCallion, P.; McCarron, M.; Force, L. T.

    2005-01-01

    It has been suggested in the literature on family caregiving for persons with Alzheimer's dementia (AD) that levels of objective and subjective burden among carers often predict institutionalization of the persons with AD. There is a paucity of measures to assess whether perceived burden among formal caregivers may also predict movement to more…

  18. Assisted Vacations for Men with Dementia and Their Caregiving Spouses: Evaluation of Health-Related Effects

    ERIC Educational Resources Information Center

    Wilz, Gabriele; Fink-Heitz, Margit

    2008-01-01

    Purpose: In this study, we conducted the first evaluation of assisted vacations for persons with dementia and their caregivers in the field of caregiving research. Design and Methods: We used a quasi-experimental, two-group, repeated measures design with two measuring times (preintervention, 3-month follow-up) to examine whether assisted vacations…

  19. The Role of Family Functioning in the Stress Process of Dementia Caregivers: A Structural Family Framework

    ERIC Educational Resources Information Center

    Mitrani, Victoria B.; Lewis, John E.; Feaster, Daniel J.; Czaja, Sara J.; Eisdorfer, Carl; Schulz, Richard; Szapocznik, Jose

    2006-01-01

    Purpose: The purpose of the study was to evaluate the role of family functioning in the stress process in a sample of caregivers of dementia patients by using a structural family framework. The stress-process model of caregiver distress included family functioning as an intervening variable in the relationship between objective burden and…

  20. [Caregivers faced with anxiety-depressive disorders in elderly people with severe dementia].

    PubMed

    Grondin, Marie; Bungener, Catherine

    2015-01-01

    A survey of 104 caregivers in nursing homes assesses their knowledge of anxiety-depressive disorders in patients with severe dementia with aphasia and their proposed treatment. Despite a lack of training, information and tools to assess these disorders and offer adapted care, this survey highlights in particular caregivers' concern for these issues. PMID:26574131

  1. Stress and Burden among Caregivers of Patients with Lewy Body Dementia

    ERIC Educational Resources Information Center

    Leggett, Amanda N.; Zarit, Steven; Taylor, Angela; Galvin, James E.

    2011-01-01

    Purpose: Patients with Lewy body dementia (LBD) may present a unique set of symptoms and challenges to family caregivers compared with other types of dementia. Prominent difficulties include motor impairment, activities of daily living (ADLs) disability, recurrent behavioral and emotional problems (BEPs), and diagnostic difficulties. These…

  2. The experiences of culturally and linguistically diverse family caregivers in utilising dementia services in Australia

    PubMed Central

    2013-01-01

    Background Older people from culturally and linguistically diverse groups are underrepresented in residential aged care but overrepresented in community aged care in Australia. However, little is known about culturally and linguistically diverse family caregivers in utilising dementia services in Australia because previous studies mainly focused on the majority cultural group. Experiences of caregivers from culturally and linguistically diverse groups who are eligible to utilise dementia services in Australia are needed in order to optimize the utilisation of dementia services for these caregivers. Methods The aim of the study was to explore the experiences of family caregivers from Chinese, Greek, Italian and Vietnamese groups in utilising dementia services. Gadamer's philosophical hermeneutics was used to interpret the experiences of the participants. Focus group discussions and in-depth individual interviews were used to collect data. Data collection was conducted over a six month period in 2011. In total, 46 family caregivers who were caring for 39 persons with dementia participated. Results Four themes were revealed: (1) negotiating services for the person with dementia; (2) the impact of acculturation on service utilisation; (3) the characteristics of satisfactory services; and (4) negative experiences in utilising services. The present study revealed that the participation of caregivers from culturally and linguistically diverse groups in planning and managing dementia services ranged markedly from limited participation to full participation. Conclusions The findings of this study suggest that caregivers from culturally and linguistically diverse groups need to be fully prepared so they can participate in the utilisation of dementia services available to them in Australia. PMID:24148155

  3. Cognitive Health Assessment and Establishment of a Virtual Cohort of Dementia Caregivers

    PubMed Central

    Lathan, Corinna; Wallace, Angela S.; Shewbridge, Rita; Ng, Nicole; Morrison, Glenn; Resnick, Helaine E.

    2016-01-01

    Background Many factors impact caregivers’ cognitive health and, by extension, their ability to provide care. This study examined the relationship between psychosocial factors and cognitive performance among dementia caregivers and established a virtual cohort of caregivers for future research. Methods Data on 527 caregivers were collected via a Web-based survey that assessed cognitive performance. Caregiver data were compared to corresponding data from 527 age-, race-, gender-, and education-matched controls from a normative database. Caregiver self-reported sleep, stress, health, and social support were also assessed. Results Caregivers performed significantly worse than controls on 3 of 5 cognitive subtests. Stress, sleep, perceived support, self-rated health, years of caregiving, race, and gender were significant predictors of cognitive performance. Conclusion In this sample of dementia caregivers, psychosocial factors interacted in complex ways to impact cognitive performance. Further investigation is needed to better understand how these factors affect cognitive performance among caregivers. This could be accomplished by the establishment of a virtual cohort that facilitates the development of digital tools to support the evaluation and management of caregiver needs in a manner that helps them remain effective in their caregiving roles. PMID:27099613

  4. Conceptualization of an evidence-based smartphone innovation for caregivers and persons living with dementia.

    PubMed

    Zhang, Melvyn W B; Chan, Sally; Wynne, Olivia; Jeong, Sarah; Hunter, Sharyn; Wilson, Amada; Ho, Roger C M

    2016-09-14

    Recent statistics released by Alzheimer's Disease International has highlighted how prevalent dementia will become in the next couple of years. Along with the increased incidence of individuals being diagnosed with dementia, there has also been an increment in the number of informal carers for people living with dementia. A recent report highlighted that in Australia, there are an estimated of 200,000 informal carers as of 2011. Caring for people who are living with dementia is not an easy task. Previous studies have highlighted that as much as 65% of caregivers do experience symptoms suggestive of depressive symptoms in the process of care. With the rapid advances in technology, it is of no surprise that information technology and its related innovations have been used in dementia care. A review of the existing literature shows that much of these innovations are focused on the care of patients affiliated with dementia. However, clearly interventions focusing on the needs of the dementia cohort of patient are limited. There are currently more emerging studies demonstrating the efficacy of web-based interventional toolkits for carers who are caring for individuals with dementia. Whilst there are previous studies demonstrating the effectiveness of smartphone interventions for dementia patients, there remains a paucity of smartphone based interventions for caregivers who are living with people with dementia. This technical note describes the conceptualization of an evidence based smartphone intervention for patients living with dementia, as well as for carers of these patients.

  5. Use of an Online Community to Provide Support to Caregivers of People With Dementia

    PubMed Central

    Pagán-Ortiz, Marta E.; Cortés, Dharma E.; Rudloff, Noelle; Weitzman, Patricia; Levkoff, Sue

    2014-01-01

    One challenge faced by many family members caring for persons with dementia is lack of information about how to take care of others and themselves. This is especially important for persons from ethnic minority groups, since linguistically and culturally appropriate information is often not available. In response to these needs, we developed a website for Spanish-speaking caregivers. Cuidatecuidador.com provides bilingual information on dementia and caregiver issues. Content was developed and then evaluated by caregivers residing in three countries. Findings suggest trends that exposure to information may be related to a higher sense of mastery and a reduction of depressive symptomatology. PMID:24689359

  6. Human subjects protection in a study of caregivers of community-residing persons with dementia.

    PubMed

    Gerber, T; Toseland, R W; McCallion, P

    2000-11-01

    This article describes the processes and methods used to protect human subjects during a joint research project undertaken by a state health department and a university-based research team. The use of a statewide registry to obtain a sample of primary caregivers of persons with dementia provided a unique opportunity for the research team to interview a large and representative sample of caregivers. At the same time, it raised complex issues regarding the privacy of the primary caregivers and the confidentiality of the patient data that were drawn from the state-operated mandatory dementia registry. Guidelines for enabling access while ensuring the privacy and confidentiality of the study participants are presented.

  7. Preserving Personhood of Individuals with Advanced Dementia: Lessons from Family Caregivers

    PubMed Central

    Palmer, Janice L.

    2014-01-01

    This article reports on a phenomenological study of 15 family caregivers who admitted their spouse or parent with probable Alzheimer’s disease to long-term care. The caregivers were attuned to the needs, desires, moods and concerns of their family members with dementia; thus, they were attuned to personhood. Caregivers also reported observations of care by nurses and nursing staff. Observations were of individualized care and actions that promoted personhood and impoverished care delivered with minimal or no communication. These family caregivers’ perspectives can inform the care of individuals with advanced dementia by nurses and nursing staff. PMID:23583171

  8. Integrating Estimates of the Social and Individual Costs of Caregiving into Dementia Treatment Trials.

    PubMed

    Phillips, Charles D

    2016-01-01

    A variety of new treatments for dementia are awaiting or undergoing randomized clinical trails. These trials focus on outcomes such as changes in cognitive function, physical function, or amyloid plaques. What is quite important and is too often missing from these trials are estimates of the impact of these treatments on the social and individual costs of providing care for those facing dementia. Until outcomes such as family caregiver time and caregiver burden are included in trails of dementia treatments, the picture of how well these treatments work will be distressingly incomplete.

  9. Evaluation of a group cognitive-behavioral dementia caregiver intervention in Latin America.

    PubMed

    Arango-Lasprilla, Juan Carlos; Panyavin, Ivan; Merchán, Edna Johanna Herrera; Perrin, Paul B; Arroyo-Anlló, Eva M; Snipes, Daniel J; Arabia, Jaqueline

    2014-09-01

    Research has identified unique cultural factors contributing to dementia caregiving in Latin America but very few caregiver interventions have been systematically piloted and evaluated in this region. The purpose of this study was to examine the effectiveness of a group cognitive-behavioral intervention in improving the mental health of dementia caregivers from Cali, Colombia. Sixty-nine caregivers of individuals with dementia were randomly assigned to the cognitive-behavioral intervention or an educational control condition, both spanning 8 weeks. Compared to controls, the treatment group showed higher satisfaction with life and lower depression and burden over the posttest and 3-month follow-ups although there was no effect of the condition on participants' stress levels.

  10. Preliminary Evidence for Effectiveness of Resourcefulness Training in Women Dementia Caregivers

    PubMed Central

    Zauszniewski, JA; Lekhak, N; Burant, CJ; Variath, M; Morris, DL

    2016-01-01

    Nearly 10 million women in the U.S. are caregivers for an elder with dementia, which often produces overwhelming stress and adversely affects their health. Resourcefulness training (RT) may promote the caregiver’s optimal health and continue in their caregiving role. This pilot trial of 138 women dementia caregivers examined the effectiveness of RT on perceived stress, depressive cognitions, and negative emotions over time. Caregivers were first randomized to RT or no RT and then further randomized into random versus choice conditions followed by assignment to the journal or recorder methods, thus creating eight groups. We examined differences on perceived stress, depressive cognitions, and negative emotions between groups: 1) RT versus no-RT, 2) choice versus random condition; and 3) journaling versus recording. Significant time by group interactions were found on stress (F=4.36, p<.05), depressive cognitions (F=10.93, p<.001), and negative emotions (F=20.48, p<.001) in the RT versus no RT group. No differences were found between the random versus choice conditions or the journaling versus recording methods for practicing the RT skills. The results provide evidence for the effectiveness of RT for decreasing stress, depressive cognitions, and negative emotions in women caregivers of elders with dementia. The findings also suggest the need for further examination of the effects of allowing caregivers to choose a method for practicing RT in larger samples if caregivers of elders with dementia. PMID:27500286

  11. The Opinion of Professional Caregivers About The Platform UnderstAID for Patients with Dementia

    PubMed Central

    Malak, Roksana; Krawczyk-Wasielewska, Agnieszka; Mojs, Ewa; Grobelny, Bartosz; Głodowska, Katarzyna B.; Millán-Calenti, José Carlos; Núñez-Naveira, Laura; Samborski, Włodzimierz

    2016-01-01

    Background The person with dementia should be treated as an unique person regarding symptoms directly associated with dementia, such as problems with memory, hallucinations, and delusions, as well as other physical, mental, or neurological deficits. The symptoms not directly typical of dementia, such as musculoskeletal disorders or depression, should be also be considered in order to improve the quality of life of a person with dementia. That is why professional caregivers have to broaden their current knowledge not only of medical symptoms but also of the patient’s psychosocial condition and increase their inquisitiveness about the individual condition of the patient. The aim of the study was to get to know the opinion of professional caregivers about the UnderstAID platform and its usefulness for informal caregivers. Material/Methods Participants in the study group consisted of professional caregivers: nurses, sociologists, psychologists, physiotherapists, and occupational therapists, all of whom specialized in geriatrics and had experience in working with people with dementia. All professional caregivers answered 24 questions that refer to positive and negative aspects of the UnderstAID platform. Results The study group of professional caregivers highly appreciated that the application could give support to caregivers (mean score of 4.78; 5 points means that they totally agreed, and 1 point means that they totally disagreed) and that a wide range of multimedia materials helped the informal caregivers to gain a better understanding of the contents (mean score of 4.78). There was a statistically significant correlation between the age of the professional caregivers and the frequency of positive opinions that the UnderstAID application gave support to caregivers of relatives with dementia (p=0.028) and the opinion that videos, photos, and pictures may help the informal caregivers to gain a better understanding of the contents (p=0.028). Conclusions A group of

  12. Factors affecting burden of family caregivers of community-dwelling ambulatory elders with dementia in Korea.

    PubMed

    Lim, Young Mi; Son, Gwi-Ryung; Song, Jun-Ah; Beattie, Elizabeth

    2008-08-01

    The purpose of the study was to test a staged causal model as a theoretical base to explain the burden of family caregivers of community-dwelling self-ambulatory persons with dementia (PWDs) in Korea. The model contained three stages including antecedents (Stage 1), behavior (Stage 2), and outcome (Stage 3). The antecedents were variables of the PWDs (e.g., cognitive impairment and activities of daily living [ADL] dependency of the PWDs) and caregiver variables (e.g., age, gender of caregiver, and the relationship of caregiver to PWD). Stage 2 focused on wandering behavior. In Stage 3, the outcome variable was caregiver burden. A total of 83 noninstitutionalized, community-dwelling elders with dementia and their family caregivers participated. The instruments used in this study were the Korean version of Mini Mental State Examination, K-PADL (Korean-Physical Activities of Daily Living), Korean-Revised Algase Wandering Scale-Community Version, and K-CWOB (Caregiver Worry, Overload, and Role Captivity Scale-Korean) Korean versions of standardized Western instruments. Results indicate that cognitive impairment and ADL dependency had an indirect influence on caregiver burden through wandering behavior. In addition, caregiver age had a direct impact on caregiver burden. The findings of this study suggest that further refinement of the underlying model is warranted.

  13. A Comparative Descriptive Study of Characteristics of Early- and Late-Onset Dementia Family Caregivers.

    PubMed

    Ducharme, Francine; Lachance, Lise; Kergoat, Marie-Jeanne; Coulombe, Renée; Antoine, Pascal; Pasquier, Florence

    2016-02-01

    Characteristics of early- and late-onset dementia family caregivers were described and compared. Based on a theoretical model of role transition, data were collected through structured interviews from 48 caregivers of adults with Alzheimer's disease or a related dementia older than the age of 70 and 48 caregivers of similarly diagnosed adults younger than the age of 60. A significantly higher proportion of caregivers of younger adults were spouses and gainfully employed compared with those of older adults; they had more years of schooling, took care of a person with more severe impairments, received more help, perceived themselves as better prepared to deal with future needs, and better informed about services. They did not differ from caregivers of older adults in terms of psychological distress, role confidence, self-efficacy, and social support. This study highlights differences and similarities to be considered in the development of services tailored to the specific needs of each group.

  14. Factor Analysis of the 12-Item Zarit Burden Interview in Caregivers of Persons Diagnosed With Dementia.

    PubMed

    Branger, Camille; O'Connell, Megan E; Morgan, Debra Gail

    2016-05-01

    The Zarit Burden Interview (ZBI) is commonly used to measure dementia caregiver burden, but its factor structure is unclear. A two-factor structure for the 12-item ZBI, "personal strain" and "role strain," has been shown, but recent data suggest that an additional factor of "guilt" is embedded in the "role strain" items. The 12-item ZBI administered to 194 informal rural and urban caregivers of persons diagnosed with dementia was analyzed using exploratory factor analysis. A two-factor structure, with item loadings consistent with previously conceptualized constructs of "personal strain" and "role strain," was found. Moreover, this factor structure was invariant to caregiver subgroups. When the predictive value of these factors was explored, only "personal strain" was important in predicting caregiver psychological distress, measured with the Brief Symptom Inventory. However, "role strain," which included the hypothesized "guilt" items, did not appear to be an important predictor of caregiver distress. PMID:24652929

  15. The Male Face of Caregiving: A Scoping Review of Men Caring for a Person With Dementia.

    PubMed

    Robinson, Carole A; Bottorff, Joan L; Pesut, Barbara; Oliffe, John L; Tomlinson, Jamie

    2014-09-01

    The purpose of this scoping review was to examine the empirical evidence published since 2007 on men as family caregivers of persons with dementia. Searches were conducted on Academic Search Complete, Ageline, CINAHL, Embase, Medline, PsychINFO, Social Work Abstracts, and Web of Science using database-specific controlled (i.e., MeSH terms) vocabulary related to dementia, men, and caregiving. Studies published in English between 2007 and 2012 that provided evidence of the experiences of male family caregivers of persons with dementia were included in the review. A total of 30 articles were selected for inclusion. Studies were grouped into three major themes for review: men's experiences of caregiving, relational factors, and outcomes of caregiving. The reviewed studies build on and support previous findings related to stress, burden, accessing services, and the importance of relational factors to men's caregiving experiences. However, there is a need for a framework that explains these findings in relation to masculinities. Such a framework would provide the necessary unifying context for a more powerful explanatory account. Furthermore, there appears to be the potential for great benefit in fully linking men's caregiver research to men's health issues as a means to articulate strategies to sustain the health and well-being of men caregivers. This seems especially relevant in light of the closing gender gap in life expectancy, which will ultimately see many men providing direct care to their partners. PMID:24414033

  16. The effect of a structured intervention on caregivers of patients with dementia and problem behaviors: a randomized controlled pilot study.

    PubMed

    Nobili, Alessandro; Riva, Emma; Tettamanti, Mauro; Lucca, Ugo; Liscio, Mariarosaria; Petrucci, Bianca; Porro, Gabriella Salvini

    2004-01-01

    The objective was to assess the effect of a structured intervention on caregiver stress and the institutionalization rate of patients with dementia and problem behaviors. Caregivers contacting the Federazione Alzheimer Italia (AI) to receive help, advice, or information in relation to problem behaviors of outpatients were enrolled. Eligible caregiver-patient dyads were randomized to receive either a structured intervention or the counseling AI usually provides (control group). After basal assessment, families were reassessed at 6 and 12 months. Problem behavior (particularly agitation) was the only variable significantly correlated (P = 0.006) with the baseline caregivers' stress score. Thirty-nine families completed the 12-month follow-up; the mean problem behavior score was significantly lower in the intervention than the control group (p < 0.03); the time needed for care of the patient increased by 0.5 +/- 9.7 hours/day in the control group and decreased by 0.3 +/- 4.1 in the intervention group (p = 0.4, Wilcoxon test). The main determinant of institutionalization seemed to be the level of caregiver stress (p = 0.03). In patients of the intervention group, there was a significant reduction in the frequency of delusions. This pilot study suggests that caregiver stress is relieved by a structured intervention. The number of families lost to follow-up, the relatively short duration of the study, and the ceiling effect due to the severity of the clinical characteristics of patients probably all partly dilute the observed findings.

  17. A pilot study of a yoga and meditation intervention for dementia caregiver stress.

    PubMed

    Waelde, Lynn C; Thompson, Larry; Gallagher-Thompson, Dolores

    2004-06-01

    Twelve older female dementia patient family caregivers (eight Latinas and four Caucasians) participated in a six-session manualized yoga-meditation program (called Inner Resources) designed to help caregivers cope with stress. Pre/post comparisons revealed statistically significant reductions in depression and anxiety and improvements in perceived self-efficacy. Average minutes of weekly yoga-meditation practice were significantly associated with improvements in depression. The majority of caregivers found the intervention useful and reported subjective improvements in physical and emotional functioning. These findings suggest that Inner Resources may be a feasible and effective intervention for family caregivers and may improve affect, coping, physical well-being, and stress management.

  18. Anger, spiritual meaning and support from the religious community in dementia caregiving.

    PubMed

    Márquez-González, María; López, Javier; Romero-Moreno, Rosa; Losada, Andrés

    2012-03-01

    This study explores the relationships between spiritual meaning and social support from the religious community and problem behaviors, anger and depression in 128 dementia caregivers. The results suggest a mediating role of anger in the relationship between the appraisal of problem behaviors and depression. Support from the religious community is directly and negatively associated with anger, but the relationship between spiritual meaning and anger is mediated by caregivers' appraisals of problem behaviors, suggesting that spiritual beliefs might help caregivers to find meaning in caregiving experiences and thus appraise care recipients' behavioral problems as less stressful.

  19. Family caregivers of individuals with frontotemporal dementia: examining the relationship between coping and caregiver physical and mental health.

    PubMed

    Wong, Cindy C; Wallhagen, Margaret I

    2014-01-01

    To identify strategies to assist family caregivers of individuals with frontotemporal dementia (FTD) in dealing with their caregiving demands, nurses must understand these family members' unique needs and how they currently deal with their demands. The purpose of this study was to examine the relationship between coping and caregiver physical and mental health among FTD family caregivers. Participants were primary caregivers of individuals with FTD (with behavioral symptoms) living at home (N = 61). A small positive association was noted between problem-focused coping and caregiver physical health (r = 0.29, p < 0.05), and a small but nonsignificant positive correlation was noted between emotion-focused coping and caregiver mental health (r = 0.21, p = 0.10). However, multiple regression analysis showed that emotion-focused coping (β = 0.46, p < 0.05) made a statistically significant, unique contribution to caregiver mental health and explained approximately 14% of its variance. These findings support the potential value of emotion-focused coping strategies when dealing with behavioral symptoms manifested by individuals with FTD.

  20. Rural Caregivers for a Family Member With Dementia: Models of Burden and Distress Differ for Women and Men.

    PubMed

    Stewart, Norma J; Morgan, Debra G; Karunanayake, Chandima P; Wickenhauser, Joseph P; Cammer, Allison; Minish, Duane; O'Connell, Megan E; Hayduk, Leslie A

    2016-02-01

    Forecasts of increasing prevalence of dementia in rural settings, coupled with reliance on family caregiver support, indicate that a greater understanding of caregiver distress in these contexts is necessary. The purpose of this study was to examine family caregiver burden and severity of distress on the day that a family member was diagnosed with dementia at a memory clinic that serves a rural population. Participants in this retrospective study were 231 primary family caregivers of a rural community-dwelling person with dementia. On the diagnostic day, women reported more burden and severity of distress than men and spouses reported more severity of distress than adult children. A structural equation model was not supported for the entire sample, but was supported for women caregivers only (n = 161). Caregiver distress related to dementia-specific behaviors explained both global distress and burden. Patients' functional decline was related to caregiver burden.

  1. A telephone intervention for dementia caregivers: background, design, and baseline characteristics.

    PubMed

    Tremont, Geoffrey; Davis, Jennifer; Papandonatos, George D; Grover, Christine; Ott, Brian R; Fortinsky, Richard H; Gozalo, Pedro; Bishop, Duane S

    2013-11-01

    Family caregivers of individuals with dementia are at heightened risk for emotional and mental health problems. Many caregivers do not seek assistance or become isolated in their caregiving role. Multi-component interventions have demonstrated efficacy for reducing emotional distress and burden, although these approaches are potentially costly and are not widely accessible. In response to these issues, we developed the Family Intervention: Telephone Tracking - Caregiver (FITT-C), which is an entirely telephone-based psychosocial intervention. The purpose of this paper is to describe the study design, methodology, and baseline data for the trial. This study uses a randomized controlled trial design to examine the efficacy of the FITT-C to reduce depressive symptoms and burden in distressed dementia caregivers. All participants (n=250) received a packet of educational materials and were randomly assigned to receive 6 months of the FITT-C intervention or non-directive telephone support. The FITT-C intervention was designed to reduce distress in caregivers and is based on the McMaster Model of Family Functioning, transition theory, and Lazarus and Folkman's Stress and Coping Models. The primary dependent variables were depressive symptoms (Centers for Epidemiological Studies - Depression) and burden (Zarit Burden Interview, Revised Memory and Behavior Problems Checklist - Reaction). Secondary outcome measures included family functioning, self-efficacy, and health-related quality of life. Results of the study will provide important data about the efficacy of a telephone-based approach to reduce distress in dementia caregivers.

  2. Beyond Familism: Ethics of Care of Latina Caregivers of Elderly Parents With Dementia

    PubMed Central

    Flores, Yvette G.; Hinton, Ladson; Barker, Judith C.; Franz, Carol E.; Velasquez, Alexandra

    2010-01-01

    Caregiving for elderly relatives with dementia is described as a stressful and challenging obligation which disproportionately befalls women in families. Studies of Latina caregivers tend to focus on how the cultural value of familism shapes caregiving expectations and experiences. However, these studies tend not to distinguish between familism as ideology and familism as practice to evaluate how caregiving may or may not conform to prescribed cultural scripts, nor to examine the ethics of care utilized by family caregivers. Through a case study of a second-generation daughter, we explore the nuances of an ethics of care that constitute her caregiving experiences and the tensions generated by efforts to respect divergent cultural mandates. PMID:19894151

  3. Conflict Resolution and Distress in Dementia Caregiver Families: Comparison of Cubans and White Non-Hispanics.

    PubMed

    Mitrani, Victoria B; Vaughan, Ellen L; McCabe, Brian E; Feaster, Daniel J

    2008-01-01

    This study investigated the role of family conflict resolution as a mediator of the relationship between ethnicity and psychological distress in dementia caregivers. The sample was composed of the families of 182 caregivers who participated in REACH (Resources for Enhancing Alzheimer's Caregiver Health). The sample consisted of 84 Cuban American and 98 non-Hispanic White American families. Mediation analyses revealed that both income and conflict resolution partially mediated the relationship between ethnicity and caregiver psychological distress. Specifically, Cuban American families were less likely than non-Hispanic White families to reach a resolution to their disagreements, which may have rendered the caregiver at greater risk for psychological distress. These results suggest that Cuban American caregivers may benefit from interventions that improve the family's ability to resolve conflicts. PMID:20448830

  4. Psychometric Properties of the Functional Capacity Card Sort for Caregivers of People With Dementia.

    PubMed

    Piersol, Catherine Verrier; Herge, E Adel; Copolillo, Albert E; Leiby, Benjamin E; Gitlin, Laura N

    2016-07-01

    Caregiver appraisal influences care decisions and may place the person with dementia at risk. The Functional Capacity Card Sort (FCCS) was developed to determine caregiver appraisal. The objective of this study was to examine FCCS psychometric properties and utility, using data from a cross-sectional study (N = 86). The FCCS had moderately positive association (convergent validity) with a related activities of daily living (ADL) index (r = .43, p < .0001), weak negative association (discriminant validity) with an unrelated neuropsychiatric symptom index (r = -.14, p = .16), and strong caregiver agreement (interrater reliability) in ranking cards from high to low function, Kendall's W(5, 72) = 0.83, p = .0001. When compared with occupational therapy assessment, the FCCS distinguished caregiver concordant estimation (17%), underestimation (22%), and overestimation (61%) of function. The FCCS is a valid and reliable tool used in conjunction with formal assessment to identify caregiver over- or underestimation, which has implications for patient safety and caregiver education. PMID:27618848

  5. Long-Term Effects of Bereavement and Caregiver Intervention on Dementia Caregiver Depressive Symptoms

    ERIC Educational Resources Information Center

    Haley, William E.; Bergman, Elizabeth J.; Roth, David L.; McVie, Theresa; Gaugler, Joseph E.; Mittelman, Mary S.

    2008-01-01

    Purpose: The purpose of this study was to examine the joint effects of bereavement and caregiver intervention on caregiver depressive symptoms. Design and Methods: Alzheimer's caregivers from a randomized trial of an enhanced caregiver support intervention versus usual care who had experienced the death of their spouse (n = 254) were repeatedly…

  6. Managing Loss and Change: Grief Interventions for Dementia Caregivers in a CBT-Based Trial.

    PubMed

    Meichsner, Franziska; Schinköthe, Denise; Wilz, Gabriele

    2016-05-01

    Dementia caregivers often experience loss and grief related to general caregiver burden, physical, and mental health problems. Through qualitative content analysis, this study analyzed intervention strategies applied by therapists in a randomized-controlled trial in Germany to assist caregivers in managing losses and associated emotions. Sequences from 61 therapy sessions that included interventions targeting grief, loss, and change were transcribed and analyzed. A category system was developed deductively, and the intercoder reliability was satisfactory. The identified grief intervention strategies were recognition and acceptance of loss and change,addressing future losses,normalization of grief, and redefinition of the relationship Therapists focused on identifying experienced losses, managing associated feelings, and fostering acceptance of these losses. A variety of cognitive-behavioral therapy-based techniques was applied with each strategy. The findings contribute to understanding how dementia caregivers can be supported in their experience of grief and facilitate the development of a manualized grief intervention. PMID:26311735

  7. Managing Loss and Change: Grief Interventions for Dementia Caregivers in a CBT-Based Trial.

    PubMed

    Meichsner, Franziska; Schinköthe, Denise; Wilz, Gabriele

    2016-05-01

    Dementia caregivers often experience loss and grief related to general caregiver burden, physical, and mental health problems. Through qualitative content analysis, this study analyzed intervention strategies applied by therapists in a randomized-controlled trial in Germany to assist caregivers in managing losses and associated emotions. Sequences from 61 therapy sessions that included interventions targeting grief, loss, and change were transcribed and analyzed. A category system was developed deductively, and the intercoder reliability was satisfactory. The identified grief intervention strategies were recognition and acceptance of loss and change,addressing future losses,normalization of grief, and redefinition of the relationship Therapists focused on identifying experienced losses, managing associated feelings, and fostering acceptance of these losses. A variety of cognitive-behavioral therapy-based techniques was applied with each strategy. The findings contribute to understanding how dementia caregivers can be supported in their experience of grief and facilitate the development of a manualized grief intervention.

  8. Physical and mental health correlates of self-efficacy in dementia family caregivers.

    PubMed

    George, Nika R; Steffen, Ann

    2014-01-01

    This study examined whether self-efficacy for controlling upsetting caregiving thoughts would longitudinally predict mental and physical health as well as utilization of psychotropic medications in help-seeking dementia family caregivers (N = 53). Positive associations were found between self-efficacy and self-reported mental health and physical health subscales of the Short Form Health Questionnaire-12, and negative correlations were found between self-efficacy for controlling upsetting thoughts about caregiving and the number of psychotropic medications being utilized both cross-sectionally and longitudinally. These results suggest that self-efficacy for controlling upsetting thoughts may be a fruitful target area for further intervention research with dementia family caregivers.

  9. Anxiety in family caregivers of hospitalized persons with dementia: Contributing factors and responses

    PubMed Central

    Chippendale, Tracy; Resnick, Barbara; Galvin, James E.

    2016-01-01

    Background Baseline health and functional vulnerabilities increase the risk for complications in persons with dementia and predispose family caregivers (FCGs) to increased stress. Methods This secondary analysis used a combined quantitative and qualitative approach. Regression analyses examined the contribution of patient and family caregiver characteristics to FCG anxiety. Interviews with FCGs explored the experiences and responses of FCGs during hospitalization of their family member with dementia. Results Lower patient physical function and higher caregiver strain were associated with higher FCG anxiety. FCGs described the following themes related to the hospitalization: 1) added strain; 2) care-related worries; 3) keeping vigil; 4) need to be heard; and 5) enablers of family caregivers. Conclusions Routine evaluation of caregiver strain and baseline patient function is integral to informing the transitional planning for persons with dementia. The FCG responses suggest that a multi-factorial approach (family-centered policies of partnership in care, staff education addressing the specialized needs of patients and family- members, and attention to promoting functional recovery) may benefit both hospitalized patients with dementia as well as FCGs and warrants future research. PMID:25635341

  10. The Experience of High Levels of Grief in Caregivers of Persons with Alzheimer's Disease and Related Dementia

    ERIC Educational Resources Information Center

    Sanders, Sara; Ott, Carol H.; Kelber, Sheryl T.; Noonan, Patricia

    2008-01-01

    An abundance of literature on caregivers of individuals with dementia has been written since the mid-1980s. However, most of this literature focused on the experience of stress, burden, and depression in caregivers, thus excluding the grief experience that also accompanies the caregiving experience. The purpose of this multimethod study is to…

  11. Predicting Desire for Institutional Placement among Racially Diverse Dementia Family Caregivers: The Role of Quality of Care

    ERIC Educational Resources Information Center

    Sun, Fei; Durkin, Daniel W.; Hilgeman, Michelle M.; Harris, Grant; Gaugler, Joseph E.; Wardian, Jana; Allen, Rebecca S.; Burgio, Louis D.

    2013-01-01

    Purpose: Literature on institutionalization of patients with dementia has not considered the role of caregivers' quality of care, which encompasses caregivers' exemplary care (EC) behaviors and caregivers' potentially harmful behaviors (PHBs) toward care recipients. This study sought to understand the role of quality of care in mediating between…

  12. Family caregiver challenges in dementia care in Australia and China: a critical perspective

    PubMed Central

    2014-01-01

    Background Both Australia and China have a large proportion of people with dementia and the prevalence will triple in Australia and increase five times in China by 2050. The majority of people with dementia are reliant on family caregivers to provide daily care and to maintain the dignity in both countries. As a consequence, caregiver burden has become a major concern because of the negative impact on the care recipients’ and the caregivers’ health. It is strongly recommended that cross-national collaboration should be conducted to share experiences in fighting dementia. The aim of this study was to compare socially and culturally constructed enablers and barriers pertinent to dementia caregivers in one capital city in Australia and one capital city in China through critical reflection on the caregivers’ subjective and objective experiences for the improvement of dementia care services in both countries. Methods Giddens’ Structuration Theory was used as a framework to guide a concurrent mixed methods design with the qualitative strand as a priority. In the qualitative strand, data were collected by focus groups and in-depth interviews while in the quantitative strand, data were collected by questionnaire survey. Results In total 148 caregivers participated in the project with 57 of them from Australia (26 and 31 in the qualitative and quantitative strands respectively) and 91 of them from China (23 and 68 in the qualitative and quantitative strands respectively). Findings from the qualitative and quantitative strands were presented as three categories: A higher objective burden in the Chinese cohort versus a higher subjective burden in the Australian cohort; Unmet need for caregiver support in Australia and China; and Expectations for improving dementia services in Australia and for developing dementia services in China. Conclusions Dementia policy, services and resources need to be grounded on current research evidence in an ever-changing society like

  13. Resourcefulness Training for Women Dementia Caregivers: Acceptability and Feasibility of Two Methods.

    PubMed

    Zauszniewski, Jaclene A; Lekhak, Nirmala; Napoleon, Betty; Morris, Diana L

    2016-01-01

    Almost 10 million women in the United States are caregivers for elders with dementia and many experience extreme stress that compromises their health. Acceptable and feasible interventions to teach them resourcefulness skills for managing stress may improve their health and facilitate continued caregiving. This study examined two commonly used methods for practicing skills taught during resourcefulness training (RT) to women caregivers of elders with dementia (n=63): journaling and digital voice recording. It also explored whether providing caregivers a choice between the two methods made it more acceptable or feasible. Qualitative and quantitative data were collected before, during, and after RT. Caregivers who recorded used more words (M=5446) but recorded fewer days (M=17) than those who journaled (M=2792 words and M=27 days). Similar concerns in relation to time management and practice method were expressed by women caregivers irrespective of practice method (journal versus recorder) or random versus choice condition. While journaling was more frequent than recording, more words were expressed during recordings. Perceived stress and depressive symptoms were unrelated to the number of practice days or word counts, suggesting RT acceptability and feasibility even for highly stressed or depressed caregivers. Because intervention feasibility is important for RT effectiveness testing, alternatives to the journaling and recording methods for practicing RT skills should be considered.

  14. Anger and health in dementia caregivers: exploring the mediation effect of optimism.

    PubMed

    López, J; Romero-Moreno, R; Márquez-González, M; Losada, A

    2015-04-01

    Although previous studies indicate a negative association between caregivers' anger and health, the potential mechanisms linking this relationship are not yet fully understood. The aim of this study was to explore the potential mediating role of optimism in the relationship between anger and caregivers' physical health. Dementia caregivers (n = 108) were interviewed and filled out instruments assessing their anger (reaction), optimism and health (vitality). A mediational model was tested to determine whether optimism partially mediated the relationship between anger and vitality. Angry reaction was negatively associated with optimism and vitality; optimism was positively associated with vitality. Finally, the relationship between angry reaction and vitality decreased when optimism was entered simultaneously. A non-parametric bootstrap approach confirmed that optimism significantly mediated some of the relationship between angry reaction and vitality. These findings suggest that low optimism may help explain the association between caregivers' anger and reduced sense of vitality. The results provide a specific target for intervention with caregivers.

  15. Danger and dementia: caregiver experiences and shifting social roles during a highly active hurricane season.

    PubMed

    Christensen, Janelle J; Castañeda, Heide

    2014-01-01

    This study examined disaster preparedness and decision-making by caregivers of community-dwelling persons diagnosed with Alzheimer's or a related dementia (ADRD). Interviews were conducted with 20 caregivers in South Florida. Twelve of these interviews include caregiving experiences during the highly active 2004-2005 hurricane seasons. Results indicate that persons in earlier stages of ADRD can, and often do, remain engaged in the disaster preparation and planning process. However, during the early stages, persons may also resist evacuation, even if the caregiver felt it was necessary. During later stages of the disease, caregivers reported less resistance to disaster-related decisions, however, with the tradeoff of less ability to assist with preparation.

  16. Caregiving Styles: A Cognitive and Behavioral Typology Associated with Dementia Family Caregiving

    ERIC Educational Resources Information Center

    Corcoran, Mary A.

    2011-01-01

    Purpose: An increasing number of elderly individuals are diagnosed with Alzheimer's disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a "cultural activity," and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted. Understanding…

  17. Stakeholder Perspectives on Policies to Support Family Caregivers of Older Adults with Dementia

    ERIC Educational Resources Information Center

    Putnam, Michelle; Pickard, Joseph G.; Rodriguez, Carroll; Shear, Erin

    2010-01-01

    Persons with dementia are often excluded from consumer-directed home- and community-based service programs because they cannot direct their own care. Surrogates are permitted in some states, thereby allowing program participation. This study explored family caregiver perspectives on policies that support family needs related to providing care to…

  18. Assisting Black and Rural Caregivers of Elders with Dementia: Progressive Training through Trusted Resources. Final Report.

    ERIC Educational Resources Information Center

    Coogle, Constance L., Ed.; Finley, Ruth B., Ed.

    A program was developed in Virginia to train Black and rural family caregivers of persons with dementia, particularly Alzheimer's disease. This final program report begins with project briefs that summarize major products and findings, program objectives and accomplishments, and dissemination activities. Chapter 1 addresses issues related to…

  19. Using Telecomputing to Provide Information and Support to Caregivers of Persons with Dementia.

    ERIC Educational Resources Information Center

    Smyth, Kathleen A.; Harris, Phyllis Braudy

    1993-01-01

    Outlines rationale for the Alzheimer's Disease Support Center (ADSC), a telecomputing-based project designed to provide information and support to caregivers of persons with dementia. Describes ADSC's context, structure, content, and operation. Notes that inherent features of telecomputing make computer-mediated information and support systems…

  20. Dyadic Intervention for Family Caregivers and Care Receivers in Early-Stage Dementia

    ERIC Educational Resources Information Center

    Whitlatch, Carol J.; Judge, Katherine; Zarit, Steven H.; Femia, Elia

    2006-01-01

    Purpose: The Early Diagnosis Dyadic Intervention (EDDI) program provides a structured, time-limited protocol of one-on-one and dyadic counseling for family caregivers and care receivers who are in the early stages of dementia. The goals and procedures of EDDI are based on previous research suggesting that dyads would benefit from an intervention…

  1. Deciding on Institutionalization for a Relative with Dementia: The Most Difficult Decision for Caregivers

    ERIC Educational Resources Information Center

    Caron, Chantal D.; Ducharme, Francine; Griffith, Jennifer

    2006-01-01

    The decision to move a family member with dementia to a nursing home is a difficult experience for caregivers. Complex psychosocial factors are involved and knowledge of predictive factors alone is insufficient. Using grounded theory, this study explores the decision-making process with regards to institutionalization, from the perspective of…

  2. A chronic grief intervention for dementia family caregivers in long-term care.

    PubMed

    Paun, Olimpia; Farran, Carol J; Fogg, Louis; Loukissa, Dimitra; Thomas, Peggy E; Hoyem, Ruby

    2015-01-01

    Dementia caregivers do not relinquish their role after placing family members in long-term care and they experience increased chronic grief. The Chronic Grief Management Intervention (CGMI) is a12-week group-based program that uses guided discussion to deliver knowledge of Alzheimer's or a related dementia and teach skills in communication, conflict resolution, and chronic grief management in dementia caregivers who placed their family members in long-term care. Using a quasi-experimental design, 83 caregivers from 15 long-term care facilities received either the CGMI (n = 34) or a comparison condition consisting of two check-in calls (n = 49). In this pilot study, we examined the feasibility of implementing the CGMI and evaluated the effects of the intervention on caregivers' knowledge and skill and their chronic grief and depression. The intervention was feasible and resulted in significant improvement in caregivers' heartfelt sadness and longing at 3 months and a significant drop in their guilt at the 6-month follow-up. PMID:24510968

  3. Minimizing Confusion and Disorientation: Cognitive Support Work in Informal Dementia Caregiving

    PubMed Central

    Berry, Brandon

    2015-01-01

    Drawing from ethnographic fieldwork and in-depth interviews, I explain how informal dementia caregivers attempt to reduce the affected individual’s moments of confusion and disorientation through cognitive support work. I identify three stages through which such support takes shape and then gradually declines in usage. In a first stage, family members collaborate with affected individuals to first identify and then to avoid “triggers” that elicit sudden bouts of confusion. In a second stage, caregivers lose the effective collaboration of the affected individual and begin unilateral attempts to minimize confused states through pre-emptive conversational techniques, third-party interactional support, and social-environment shifts. In a third stage, caregivers learn that the affected individual has reached a level of impairment that does not respond well to efforts at reduction and begin abandoning strategies. I identify the motivations driving cognitive support work and discuss the role of lay health knowledge in dementia caregiving. I conclude by considering the utility of cognitive support as a concept within dementia caregiving. PMID:24984915

  4. Advanced Practice Nursing: Meeting the Caregiving Challenges for Families of Persons with Frontotemporal Dementia

    PubMed Central

    Merrilees, Jennifer; Ketelle, Robin

    2010-01-01

    Frontotemporal dementia (FTD), once thought to be a rare cause for dementia, is now acknowledged to be the most common presenile (before age 65) cause of dementia (1). FTD is associated with profound changes in behavior, personality, emotions, and cognition. The purpose of this paper is to describe two cases of patients with FTD in order to illustrate salient aspects of the caregiving experience. Issues faced by caregivers are organized into 6 categories: diagnosis, behavioral symptoms, function, communication, long term management and care, and maintenance of the caregiver’s emotional and physical health. Examples of interventions directed by advanced practice nurses are described. We suggest that management of FTD requires expertise as scientific advances and discoveries about FTD continually change the landscape of care. PMID:20716977

  5. Perceptions of the process of care among caregivers and care recipients in dementia care networks.

    PubMed

    Jaglal, Susan; Cockerill, Rhonda; Lemieux-Charles, Louise; Chambers, Larry W; Brazil, Kevin; Cohen, Carole

    2007-01-01

    The Dementia Care Networks Study investigated 4 community-based, not-for-profit dementia care networks in Ontario, Canada. Investigators examined whether sociodemographic and health characteristics, type of support network, and amount of service use among care recipients and caregivers (n = 267 dyads) were associated with experiences with care processes. The process-of-care constructs were: family physicians' awareness of services; experiences with health care workers, and assessment and placement activities. The findings highlighted that family physicians' understanding of dementia and their ability to work with the dyad to become aware of and accept services, was an important component in the dyad's satisfaction. If caregivers received home support and the care recipients received emotional support from their social support network, they were more likely to be satisfied with their experiences with health care workers. In summary, increased awareness and provision of services were associated with more positive perceptions of network effectiveness. PMID:17545137

  6. Caregiver report of apathy predicts dementia in Parkinson’s disease

    PubMed Central

    Fitts, Whitney; Weintraub, Daniel; Massimo, Lauren; Chahine, Lama; Chen-Plotkin, Alice; Duda, John E.; Hurtig, Howard I.; Rick, Jacqueline; Trojanowski, John Q.; Dahodwala, Nabila

    2015-01-01

    Introduction Apathy is a common, troublesome symptom in Parkinson’s disease (PD). However, little is known about its relationship with long-term cognition. We sought to determine if a caregiver-reported apathy measure predicts the development of PD dementia. Methods Non-demented PD patients were recruited as part of a longitudinal study of cognition. Demographics, medications, Dementia Rating Scale-2, Unified Parkinson’s Disease Rating Scale, Geriatric Depression Scale and the Neuropsychiatric Inventory-Questionnaire (NPI-Q) ratings were obtained. Apathy was defined as an NPI-Q apathy score ≥ 1. Participants were evaluated annually with cognitive and functional assessments until the end of the study period or a physician consensus diagnosis of dementia was assigned. Cox proportional hazard models were used to assess the effects of baseline apathy on dementia development while controlling for other clinical and demographic factors. Results Of 132 PD patients 12.1% (N=16) scored in the apathetic range at baseline. A total of 19.6% (N=26) individuals developed dementia over the course of the study, 8 of whom (30.8% of future dementia patients) had baseline apathy. In bivariate analyses baseline apathy, older age, and worse cognitive, motor, and depressive symptom scores predicted the development of dementia. In a multivariate analysis the predictive effects of baseline apathy were still significant (HR=3.56; 95% CI=1.09–11.62; p=0.04). Conclusions A simple, caregiver-reported measure of apathy is an independent predictor of progression to dementia in PD. This highlights the importance of apathy as a clinical characteristic of PD and could prove useful for the prediction of future dementia. PMID:26117435

  7. Predicting Desire for Institutional Placement Among Racially Diverse Dementia Family Caregivers: The Role of Quality of Care

    PubMed Central

    Sun, Fei

    2013-01-01

    Purpose: Literature on institutionalization of patients with dementia has not considered the role of caregivers’ quality of care, which encompasses caregivers’ exemplary care (EC) behaviors and caregivers’ potentially harmful behaviors (PHBs) toward care recipients. This study sought to understand the role of quality of care in mediating between caregiving stressors and caregiver desire to institutionalize (DTI) a patient with dementia. Design and Methods: A sample of 612 family caregivers from diverse racial/ethnic backgrounds was drawn from the baseline data of the Resources for Enhancing Alzheimer’s Caregiver Heath (REACH II) project. Multiple mediator models were run using Preacher and Hayes asymptotic and resampling strategies to assess direct and indirect effects of caregiver stressors (daily care bother, behavioral bother, and burden) on caregiver desire to institutionalize a patient with dementia. Results: Overall, PHB was positively related to caregiver desire to institutionalize their care recipients. Specifically, PHB was found to mediate the relationship between caregiving stressors and DTI in the Caucasian and Latino groups, whereas only the mediation effect of EC was significant in the African American group. Implications: Caregivers’ perceptions of quality of care helped explain their desire to institutionalize their care recipients with dementia. Including assessment of EC and PHB in clinical and social service settings is recommended for all ethnic groups. Interventions should facilitate EC behaviors among African American caregivers and address concerns of PHBs in Caucasian and Latino caregivers. PMID:22961466

  8. Caregiving Styles: A Cognitive and Behavioral Typology Associated With Dementia Family Caregiving

    PubMed Central

    Corcoran, Mary A.

    2011-01-01

    Purpose: An increasing number of elderly individuals are diagnosed with Alzheimer’s disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a “cultural activity,” and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted. Understanding this thinking–action process has important implications for future research and service. Reasoned action theory provides empirical evidence that attitudes and beliefs, as they are influenced by the social environment, predict intentions to act. In turn, behavioral intentions can reliably predict behaviors. This grounded theory study describes a typology of caregiving styles relevant to family members of an individual with ADRD, where caregiving style is defined as a culturally based pattern in thinking and action. The goal of this study was to characterize the relationship between caregiver intentions and care strategies. Methods: Study participants included 97 individuals residing in the Washington, DC, area, who provide daily care for a family member with ADRD. Narrative data were collected from each caregiver during three 1-hr interview sessions. A subset of 30 caregiver–care recipient (CR) dyads was videotaped during typical interactions. Results: Four caregiving styles were identified (facilitating, balancing, advocating, and directing), which differ primarily in the intended focus of care and preferred interactions with the CR. Implications: The results provide a foundation for future studies of the relationships between sociocultural context, caregiving styles and strategies, and ensuing outcomes for caregiver–CR dyads. PMID:21335422

  9. Relationship Between Emotions, Emotion Regulation, and Well-Being of Professional Caregivers of People With Dementia.

    PubMed

    Bassal, Catherine; Czellar, Judith; Kaiser, Susanne; Dan-Glauser, Elise S

    2016-05-01

    So far, limited research has been carried out to better understand the interplay between the emotions, the use of emotion regulation strategies, and the well-being of professional caregivers of People with Dementia (PwD). This pilot study (N = 43 professional caregivers) aimed to (1) describe the type and frequency of emotions experienced at work; (2) analyze the associations between experienced emotions, emotion regulation strategies, and well-being; and (3) test whether the use of specific emotion regulation strategies moderates the relationship between experienced emotions and emotional exhaustion. In the challenging context of professionally caring for PwD, results suggest that (1) caregivers experience positive emotions more frequently than negative emotions; (2) caregivers using relatively inappropriate regulation strategies are more likely to experience negative emotions, less likely to experience positive emotions, and have poorer physical and mental health; and (3) expressive suppression significantly moderates the relationship between positive experienced emotions and emotional exhaustion.

  10. Judging Outcomes in Psychosocial Interventions for Dementia Caregivers: The Problem of Treatment Implementation

    PubMed Central

    Burgio, Louis; Corcoran, Mary; Lichstein, Kenneth L.; Nichols, Linda; Czaja, Sara; Gallagher-Thompson, Dolores; Bourgeois, Michelle; Stevens, Alan; Ory, Marcia; Schulz, Richard

    2008-01-01

    Purpose In published dementia caregiver intervention research, there is widespread failure to measure the level at which treatment was implemented as intended, thereby introducing threats to internal and external validity. The purpose of this article is to discuss the importance of inducing and assessing treatment implementation (TI) strategies in caregiving trials and to propose Lichstein’s TI model as a potential guide. Design and Methods The efforts of a large cooperative research study of caregiving interventions, Resources for Enhancing Alzheimer’s Caregiver Health (REACH), illustrates induction and assessment of the three components of TI: delivery, receipt, and enactment. Results the approaches taken in REACH vary with the intervention protocols and include using treatment manuals, training and certification of interventionists, and continuous monitoring of actual implementation. Implications Investigation and description of treatment process variables allows researchers to understand which aspects of the intervention are responsible for therapeutic change, potentially resulting in development of more efficacious and efficient interventions. PMID:11490046

  11. The Savvy Caregiver Program: Developing and Testing a Transportable Dementia Family Caregiver Training Program

    ERIC Educational Resources Information Center

    Hepburn, Kenneth W.; Lewis, Marsha; Sherman, Carey Wexler; Tornatore, Jane

    2003-01-01

    Purpose: This article reports on the development and field testing of the Savvy Caregiver Program, the transformation of a successful, academic-based caregiver psychoeducational program into a self-contained program that can be adopted in other locations. Design and Methods: Program development began with a prototype of a 12-hr course with the…

  12. Effects of a Telephone-Based Exercise Intervention for Dementia Caregiving Wives: A Randomized Controlled Trial

    PubMed Central

    Connell, Cathleen M; Janevic, Mary R.

    2011-01-01

    Despite the importance of self-care for dementia caregivers, few interventions have included a focus on health behaviors. The current study reports outcomes of a telephone-based exercise intervention designed for women caring for a spouse with dementia. Caregivers (N = 137) were randomized to intervention or control conditions. Participants with at or below-median exercise scores at baseline had a significantly greater increase in exercise at six-month follow-up compared to their control counterparts. At 6 months, participants had greater reductions in perceived stress relative to controls. Participants also reported significantly greater increases in exercise self-efficacy than caregivers in the control group at both follow-up points. . Results indicate that spouse caregivers are able to increase their physical activity and that a focus on exercise in multi-component interventions may be beneficial. Debate and discussion is needed to inform expectations for program impacts and their maintenance and to explore the interface between enhanced self-care and caregiving perceptions. PMID:21709757

  13. Dementia and Caregiver Stress: An Application of the Reconceptualized Uncertainty in Illness Theory.

    PubMed

    Unson, Christine; Flynn, Deborah; Glendon, Mary Ann; Haymes, Elayne; Sancho, Diane

    2015-06-01

    The Reconceptualized Uncertainty in Illness Theory (RUIT) was used to investigate antecedents to, appraisals of, and ways of coping with stressful caregiving. Four focus groups with caregivers (8 males and 16 females) of relatives with dementia were conducted; 15 cared for their parents and the remainder cared for their spouses. They were recruited from an adult care center and other community settings in a metropolitan area in New England. The discussions were audiotaped and transcribed verbatim. Two researchers independently coded the transcripts. Thematic analysis was structured according to the RUIT. The study is unique in its application to caregivers as opposed to patients and to all of the elements of the RUIT. Caregivers experience uncertainty in similar ways to patients with life-altering illness. Symptom severity--lack of personal boundaries, repetitive and aggressive behaviors, and the need for constant care--was the most frequent source of stress. The appraisals were mostly negative and included feelings of resentment, a lack of support from family members, financial strains, and loss of freedom. Self-improvement and self-care were important aspects of coping. Spirituality and humor were other coping skills that respondents used. Not all respondents said they were coping and some also reported that support from health care providers was not always helpful. Nurses can help improve coping by explaining the factors that contribute to caregiver strain and uncertainty, and by assisting caregivers to anticipate the effects of the caregiving role.

  14. Factors Associated with Caregiver Readiness to Use Nonpharmacologic Strategies to Manage Dementia-related Behavioral Symptoms

    PubMed Central

    Rose, Karen

    2013-01-01

    Background Nonpharmacologic strategies to manage dementia-related behavioral symptoms depend upon caregiver implementation. Caregivers may vary in readiness to use strategies. We examined characteristics associated with readiness, extent readiness changed during intervention, and predictors of change in readiness. Methods Data from a randomized trial involving 119 caregivers in a nonpharmacologic intervention for managing behavioral symptoms. Baseline measures included caregiver, patient, and treatment-related factors. At initial (2 weeks from baseline) and final (16-weeks) intervention sessions, interventionists rated caregiver readiness as pre-action (precontemplation=1; contemplation=2; preparation=3) or action (=4). Ordinal logistic regression identified baseline characteristics associated with initial readiness. Mc Nemar-Bowker test of symmetry described change in readiness; binary logistic regression identified baseline predictors of change in readiness (initial-to-final session). One-way MANOVA identified treatment factors (dose/intensity, number of strategies used, perceived benefits, therapeutic engagement) associated with change in readiness. Results At initial intervention session, 67.2% (N=80) of caregivers were in pre-action, 32.8% (N=39) in action. Initial high readiness was associated with better caregiver mood, less financial difficulty, lower patient cognition and more behavioral symptoms. By final session, 72% (N=79) were in action, 28% (N=31) in pre-action; caregivers with less financial difficulty improved in readiness (B =−.70, p=.017); those in action were more therapeutically engaged (F (2,107)=3.61, p=.030) and perceived greater intervention benefits (F (2, 88)=6.06, p=.003). Conclusion Whereas patient and caregiver-related factors were associated with initial readiness, financial stability, therapeutic engagement and perceived benefits enhanced probability of change. Understanding caregiver readiness and factors associated with its change

  15. Information and Referral Service Usage among Caregivers for Dementia Patients.

    ERIC Educational Resources Information Center

    Coyne, Andrew C.

    1991-01-01

    Analyzed data from 125 questionnaires completed by callers of telephone helpline specializing in Alzheimer's disease and related dementing illnesses. On average, 3.94 requests for information were made per call. Most common requests concerned home services, general information about dementia, information about adult day care, and support group…

  16. Adapting the Structural Family Systems Rating to Assess the Patterns of Interaction in Families of Dementia Caregivers

    PubMed Central

    Mitrani, Victoria B.; Feaster, Daniel J.; McCabe, Brian E.; Czaja, Sara J.; Szapocznik, Jose

    2008-01-01

    Purpose: This study adapted the Structural Family Systems Ratings (SFSR), an observational measure of family interactions, for dementia caregivers. This article presents the development of the SFSR-Dementia Caregiver adaptation (SFSR-DC) and examines relationships between specific family-interaction patterns and caregiver distress. Design and Methods: The families of 177 Cuban American and White non-Hispanic American caregivers of dementia patients were assessed at baseline, 6, 12, and 18 months. Structural family theory and clinical experience were used to identify family interaction patterns believed to be related to caregiver emotional functioning. Factor analysis was used to refine subscales and develop a multiscale measure. Results: Six reliable subscales were related to caregiver distress and included in the SFSR-DC. There were two second-order factors. The SFSR-DC was provisionally cross-validated and showed invariance across the two ethnic groups. Implications: The SFSR-DC provides a method for examining specific and multiple interaction patterns in caregiver families and thus can advance knowledge regarding the role of the family in the stress processes of caregiving. These findings support the relevance of family interactions in caregiver distress and suggest that a treatment approach aimed at supporting family closeness and conflict resolution and reducing negativity might enhance caregiver well-being. PMID:16051907

  17. Caregiving for a loved one with dementia at the end of life: an emergent theory of rediscovering.

    PubMed

    Lewis, Laura Foran

    2015-08-01

    Millions face the challenges of caregiving for a loved one with dementia. A classic Glaserian grounded theory methodology was used to discover the problem that caregivers of individuals with dementia face at the end of life and how they attempt to resolve that problem. Data were collected from a theoretical sample of 101 participants through in-person interviews, online interviews, book and blog memoirs of caregivers, and participant observation. Constant comparative method revealed a basic social psychological problem of role entrapment. Caregivers attempt to resolve this problem through a 5-stage basic social psychological process of rediscovering including missing the past, sacrificing self, yearning for escape, reclaiming identity, and finding joy. Health care professionals can support caregivers through this journey by validating, preparing caregivers for future stages, and encouraging natural coping strategies identified in this process. This study provides a substantive theory that may serve as a framework for future studies.

  18. At the Crossroads: Development and Evaluation of a Dementia Caregiver Group Intervention to Assist in Driving Cessation

    ERIC Educational Resources Information Center

    Stern, Robert A.; D'Ambrosio, Lisa A.; Mohyde, Maureen; Carruth, Anastasia; Tracton-Bishop, Beth; Hunter, Jennifer C.; Daneshvar, Daniel H.; Coughlin, Joseph F.

    2008-01-01

    Deciding when an individual with dementia must reduce or stop driving can be a stressful issue for family caregivers. The purpose of this study was to develop a group intervention to assist these caregivers with driving issues and to provide a preliminary evaluation of the comparative effectiveness of this At the Crossroads intervention.…

  19. Family physicians’ perspectives on care of dementia patients and family caregivers

    PubMed Central

    Yaffe, Mark J.; Orzeck, Pam; Barylak, Lucy

    2008-01-01

    ABSTRACT OBJECTIVE To identify factors that facilitate or impede family physicians in ambulatory care of patients with dementia and the family caregivers of such patients. DESIGN Explanatory qualitative analyses of focus group discussions. SETTING Large, medium, and small urban; suburban; and rural family practices from various regions of the province of Quebec. PARTICIPANTS Twenty-five family doctors whose practices had at least 75% ambulatory patients; of these patients, an estimated minimum of 20% were 65 years old or older and at least 2% suffered from dementia. METHOD Physicians were recruited by telephone to be paid participants in their regions in focus groups studying aspects of dementia care in ambulatory settings. Grounded theory and constant comparative methods were used to explore data from 3 French-speaking focus groups and 1 English-speaking focus group. MAIN FINDINGS Physicians were 72% male, had a mean of 21.3 years in practice, and spent about 87% of their professional time in office practice. An estimated 38.7% of their patients were 65 years old or older, and 5.6% of these patients had Alzheimer disease or related dementias. Physicians were comfortable caring for these patients and their family caregivers but thought much of this care should come from support services offered elsewhere. Physicians admitted they had little knowledge of these services and had little interest in acquiring information about them. Government-run, community-based health and social service centres were the “black boxes” to which they referred patients and their caregivers for any form of help. Inconsistencies in the services offered by these centres were noted. CONCLUSION While family doctors are seeking a more seamless form of interdisciplinary dementia care, a large amount of that care comes from support services about which physicians are not well informed and are not interested in learning. PMID:18625826

  20. Addressing everyday challenges: feasibility of a family caregiver training program for people with dementia.

    PubMed

    DiZazzo-Miller, Rosanne; Samuel, Preethy S; Barnas, Jean M; Welker, Keith M

    2014-01-01

    OBJECTIVE. The purpose of this study was to examine the feasibility and efficacy of the Family Caregiver Training Program for assisting with the basic activities of daily living of people with dementia. METHOD. A one-group pretest-posttest research design with a 3-mo follow-up was used to examine the efficacy of a manualized education program for caregivers. The 6-hr training was delivered to 72 family caregivers over 3 consecutive weeks (2 hr/wk) by trained clinicians. RESULTS. Caregivers showed a significant gain in knowledge of how to effectively assist with communication and nutrition, t(52) = 7.05, p < .000; transfers and toileting, t(45) = 3.10, p < .003; and bathing and dressing, t(44) = 2.71, p < .01, of their care recipients. CONCLUSION. Our findings demonstrate that this manualized intervention protocol is a promising method of equipping family members with the skills needed to face their everyday challenges in caring for people with dementia.

  1. Physical activity program for patients with dementia and their relative caregivers: randomized clinical trial in Primary Health Care (AFISDEMyF study)

    PubMed Central

    2014-01-01

    Background The aging of the population has led to the increase of chronic diseases, especially dementia and cardiovascular diseases, and it has become necessary for their relatives to dedicate more time in caregiving. The objective in the first phase of this study is to evaluate the effectiveness of a Primary Health Care procedure to increase the physical activity of people with dementia and their relative caregivers. Also the effect on the cognitive state and cardiovascular risk will be assessed. Methods/Design Design: Clinical, multicentric and randomized trial. A simple random sampling to select 134 patients diagnosed with dementia will be carried out. After contacting their relatives, his/her participation in the trial will be requested. A basal assessment will be made and the participants will be asigned to control or intervention group (1:1). Variables: The main measure will be the assessment of physical activity (podometer and 7-PAR) in patients and caregivers. In patients with dementia: ADAS-cog, functional degree and cardiovascular risk. In caregivers: cardiovascular risk, general health and quality of life. Intervention: For 3 months, participants will receive instructions to do physical activity with an adapted program. This program will be designed and applied by Primary Health Care professionals in patients with dementia and their caregivers. The control group will receive regular care. Analysis: An intention-to-treat analysis will be carried out by comparing the observed differences between basal, 6 and 12 months measures. Change in the mean of daily steps assessed with the podometer and 7-PAR will be the main result. Discussion If the main hypothesis is confirmed, it could be useful to improve the cognitive state of patients with dementia, as well as the cardiovascular risk of all of them. The results can be good to improve technical features of the devices that register the physical activity in the patients with dementia, and it could facilitate

  2. Depression of Family Caregivers Is Associated with Disagreements on Life-Sustaining Preferences for Treating Patients with Dementia

    PubMed Central

    Tsai, Chia-Fen; Lee, Yao-Tung; Lee, Wei-Ju; Hwang, Jen-Ping; Wang, Shuu-Jiun; Fuh, Jong-Ling

    2015-01-01

    Background Family caregivers may not agree with patients with dementia regarding attitudes toward end-of-life preferences, and the effects of this type of disagreement are not well understood. This study sought to identify such a disagreement and its predictors. Methods A cross-sectional sample of 84 family caregivers and patients with dementia was recruited from memory clinics. We used the Mini-Mental State Examination, Neuropsychiatric Inventory, Clinical Dementia Rating, and Katz index of independence in activities of daily living to assess patient symptoms, functions, and severity of dementia. Caregivers completed questionnaires on perceived patient end-of-life care preferences, caregiver end-of-life care preferences for patients, Zarit Burden Interview (ZBI), Center for Epidemiological Studies–Depression Scale (CES-D), and knowledge of clinical complications of advanced dementia. Results The self-disclosure rates of patient preferences were 34.5% for tube feeding, 39.3% for cardiopulmonary resuscitation, and 45.2% for mechanical ventilation. For patients who had disclosed preferences, the disagreement rate between them and their caregivers was 48.3% for tube feeding, 48.5% for cardiopulmonary resuscitation, and 60.3% for mechanical ventilation. Caregiver depression (i.e., CES-D ≥16) was associated with disagreements on cardiopulmonary resuscitation (adjusted odds ratio (aOR) = 6.6, 95% CI = 1.4–31.1, P = 0.01) and mechanical ventilation (aOR = 14, 95% CI = 2.2–87.2, P = 0.005) preferences. Conclusion The preferences of end-of-life issues differed greatly between dementia patients and their caregivers. Depression in caregivers is associated with such discrepancy. PMID:26230958

  3. Usefulness of a Tailored eHealth Service for Informal Caregivers and Professionals in the Dementia Treatment and Care Setting: The eHealthMonitor Dementia Portal

    PubMed Central

    Marinova-Schmidt, Velislava; Setzer, Manuela; Kondylakis, Haridimos; Griebel, Lena; Sedlmayr, Martin; Graessel, Elmar; Maler, Juan Manuel; Kirn, Stefan; Kolominsky-Rabas, Peter L

    2016-01-01

    Background The European eHealthMonitor project (eHM) developed a user-sensitive and interactive Web portal for the dementia care setting called the eHM Dementia Portal (eHM-DP). It aims to provide targeted support for informal caregivers of persons with dementia and professionals. Objective The objective of this study was to assess the usefulness and impact of the eHM-DP service in the dementia care setting from two user perspectives: informal caregivers and professionals. Methods The evaluation study was conducted from June to September 2014 and followed a before-after, user-participatory, mixed-method design with questionnaires and interviews. The used intervention was the eHM-DP: an interactive Web portal for informal caregivers and professionals that was tested for a 12-week period. Primary outcomes for caregivers included empowerment, quality of life, caregiver burden, decision aid, as well as perceived usefulness and benefits of the eHM-DP. Primary outcomes for professionals involved decision aid, perceived usefulness, and benefits of the eHM-DP. Results A total of 25 informal caregivers and 6 professionals used the eHM-DP over the 12-week study period. Both professionals and informal caregivers indicated perceived benefits and support by the eHM-DP. In total, 65% (16/25) of informal caregivers would use the eHM-DP if they had access to it. Major perceived benefits were individualized information acquisition, improved interaction between informal caregivers and professionals, access to support from home, and empowerment in health-related decisions (PrepDM Score: 67.9). Professionals highlighted the improved treatment and care over the disease course (83%, 5/6) and improved health care access for people living in rural areas (67%, 4/6). However, there was no improvement in caregiver burden (Burden Scale for Family Caregivers) and quality of life (EuroQol-5D-5L) over the study period. Conclusions Our study provides insight into the different user perspectives

  4. Dementia service centres in Austria: A comprehensive support and early detection model for persons with dementia and their caregivers – theoretical foundations and model description

    PubMed Central

    Span, Edith; Reisberg, Barry

    2015-01-01

    Despite the highly developed social services in Austria, the County of Upper Austria, one of the nine counties of Austria had only very limited specialized services for persons with dementia and their caregivers in 2001. Support groups existed in which the desire for more specialized services was voiced. In response to this situation, funding was received to develop a new structure for early disease detection and long term support for both the person with dementia and their caregivers. This article describes the development of the model of the Dementia Service Centres (DSCs) and the successes and difficulties encountered in the process of implementing the model in six different rural regions of Upper Austria. The DSC was described in the First Austrian Dementia Report as one of the potential service models for the future. PMID:24339114

  5. Dementia service centres in Austria: A comprehensive support and early detection model for persons with dementia and their caregivers - theoretical foundations and model description.

    PubMed

    Auer, Stefanie R; Span, Edith; Reisberg, Barry

    2015-07-01

    Despite the highly developed social services in Austria, the County of Upper Austria, one of the nine counties of Austria had only very limited specialized services for persons with dementia and their caregivers in 2001. Support groups existed in which the desire for more specialized services was voiced. In response to this situation, funding was received to develop a new structure for early disease detection and long term support for both the person with dementia and their caregivers. This article describes the development of the model of the Dementia Service Centres (DSCs) and the successes and difficulties encountered in the process of implementing the model in six different rural regions of Upper Austria. The DSC was described in the First Austrian Dementia Report as one of the potential service models for the future.

  6. Frankly, None of Us Know What Dementia Is: Dementia Caregiving Among Iranian Immigrants Living in Sweden.

    PubMed

    Antelius, Eleonor; Kiwi, Mahin

    2015-01-01

    In quite a short amount of time, Sweden has gone from being a relatively homogeneous society to a multicultural one, with a rapid expansion of immigrants having culturally and linguistically diverse (CALD) backgrounds growing old in Sweden. This is particularly interesting in relation to studying age-related dementia diseases. Research shows that not only do CALD persons with dementia diseases tend to mix languages, have difficulties with separation of languages, or revert to speaking only their native tongue as the disease progresses, but they also show tendencies to experience that they live in the cultural environment in which they were brought up, rather than in the current Swedish one. In this article, we explore findings in relation to one such CALD group in Sweden, Iranians. The article is empirically driven and based on data gathered in 2 separate settings with specific ethnocultural profiles, offering dementia care with Middle Eastern, Arab, and/or Persian profile. Observations were carried out in combination with semistructured in-depth interviews (n = 66). By using a combination of content and ethnographic analysis, 4 main findings related to ethnocultural dementia care were elucidated. These include (a) a wider recognition of people from different CALD backgrounds possibly having different perceptions of what dementia is, (b) a possibility that such ascribed meaning of dementia has a bearing on health maintenance and health-seeking behavior as well as the inclination to use formal services or not, (c) choosing to use formal service in the forms of ethnoculturally profiled dementia care facility seems to relate to being able to "live up to ideals of Iranian culture," and (d) "culture," however ambiguous and hotly debated a concept it is, appears to be a relevant aspect of people's lives, an aspect that is both acquired as well as ascribed to oneself and to others. As such, we argue that culture needs to be further addressed in relation to dementia care

  7. Maladaptive cognitions and physical health of the caregivers of dementia: An interpretative phenomenological analysis

    PubMed Central

    Ali, Sidra; Bokharey, Iram Z.

    2015-01-01

    The aim of the study was to conduct in-depth analyses of the lived experiences of the caregivers of dementia and their maladaptive thinking patterns and how their physical health was influenced and compromised. The main method used was interpretative phenomenological analysis and involved in-depth analysis of eight participants screened through homogenous purposive sampling. After taking written consent from the participants, semi-structured interviews were conducted to gather the data that were transcribed later on to carry out free textual analysis. The themes were generated from the transcripts through the funneling approach in order to arrive at the themes that were common, frequent, and reflected the experiences shared by the participants. The verification was done through peer review and rich thick description. The most significant themes regarding maladaptive cognitions were catastrophizing, overgeneralizing, and blaming, whereas fatigue and sleep disturbances were the most significant themes regarding physical health. The emergent themes point towards a need to devise indigenous therapeutic intervention for the caregivers of dementia in the Pakistani sociocultural context as the literature available on caregiving is quite scanty in our culture. PMID:26384522

  8. Demographic and socio-economic influences on community-based care and caregivers of people with dementia in China

    PubMed Central

    Lang, Linda; Clifford, Angela; Chen, Yang; Han, Thang S

    2016-01-01

    Background Dementia is a major public health challenge and China has the largest population with dementia in the world. However, dementia care and caregivers for Chinese are less investigated. Objectives and design To evaluate demographic and socio-economic influences on dementia care, management patterns and caregiver burden in a household community-dwelling-based survey, using participants’ care receipts and Zarit scale. Setting and participants Rural and urban communities across six provinces of China comprising 4837 residents aged ≥60 years, in whom 398 had dementia and 1312 non-dementia diseases. Results People with dementia were less likely to receive care if they were living in rural compared to urban areas (Odd ratio (OR) = 0.20; 95%CI: 0.10–0.41), having education level below compared to above secondary school (OR = 0.24; 95%CI: 0.08–0.70), manual labourer compared to non-manual workers (OR = 0.27; 95%CI: 0.13–0.55), having personal annual income below RMB 10,000 yuan (£1000) compared to above (OR = 0.37; 95%CI: 0.13–0.74) or having four or more than compared to less four children (OR = 0.52; 95%CI: 0.27–1.00). Caregivers for dementia compared with those for non-dementia diseases were younger and more likely to be patients’ children or children in-law, had lower education and spent more caring time. Caregiver burden increased with low education, cutback on work and caring for patients who were younger or living in rural areas, and this caregiver burden was three-fold greater than that for non-dementia diseases. Conclusions There are a number of inequalities in dementia care and caregiver burden in China. Reducing the socio-economic gap and increasing education may improve community care for people with dementia and preserve caregivers’ well-being. PMID:27478589

  9. Applicability of the pre‐death grief concept to dementia family caregivers in Asia

    PubMed Central

    2015-01-01

    Objective Pre‐death grief is prevalent among dementia family caregivers. When unaddressed, it produces adverse outcomes. With its research primarily conducted in Caucasians, its applicability to non‐Caucasians is uncertain. We explore the existence and the characteristics of pre‐death grief in a multi‐ethnic Asian population using an established pre‐death grief scale—Marwit–Meuser Caregiver Grief Inventory (MM‐CGI). Methods Seventy‐two dementia family caregivers were recruited from a tertiary hospital. Existence of pre‐death grief was shown by its measurability on MM‐CGI, together with good internal consistency reliability and construct validity. Characteristics of pre‐death grief were explored through multivariate linear regression of MM‐CGI and by comparing MM‐CGI scores with those from the original US study using one‐sample T‐test. Results In the Asian context, pre‐death grief was measurable in a reliable and valid manner. Risk factors of pre‐death grief included caring for patients with severe dementia, spousal relationship and secondary or below education. Influence of culture was palpable—Asians had more worries and felt isolation, and certain ethnicity showed more pre‐death grief. Conclusions Pre‐death grief is applicable even to the non‐Caucasian population. It bears much similarity to that in Caucasians. Yet, its expression is modified by culture. Clinicians working with non‐Caucasian populations need to be sensitive to its presence and to the influence of culture on its expression. © 2015 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons, Ltd. PMID:26555857

  10. Development of an Online Platform to Support the Network of Caregivers of People with Dementia.

    PubMed

    Verwey, Renée; van Berlo, Miranda; Duymelinck, Saskia; Willard, Sarah; van Rossum, Erik

    2016-01-01

    In the Netherlands, care technology is used insufficiently to support people with dementia, their family and professional caregivers. In this project we integrate a range of services and applications into an online platform, with the aim to strengthen these networks and to support communication between their members. The prototype of the platform was made in an iterative user centered way. Semi structured (group) interviews were conducted to specify the requirements. The platform consists of 'cubes' with information about dementia (care), video communication options, a calendar and a care plan. The first prototype of the platform was valued by the participants, but privacy matters and registration issues were pointed out when using a shared care plan. Additional applications to monitor health and safety will be integrated in the second prototype. This prototype will be tested on its usability, feasibility and desirability during a pilot study in spring 2016. PMID:27332265

  11. Development of an Online Platform to Support the Network of Caregivers of People with Dementia.

    PubMed

    Verwey, Renée; van Berlo, Miranda; Duymelinck, Saskia; Willard, Sarah; van Rossum, Erik

    2016-01-01

    In the Netherlands, care technology is used insufficiently to support people with dementia, their family and professional caregivers. In this project we integrate a range of services and applications into an online platform, with the aim to strengthen these networks and to support communication between their members. The prototype of the platform was made in an iterative user centered way. Semi structured (group) interviews were conducted to specify the requirements. The platform consists of 'cubes' with information about dementia (care), video communication options, a calendar and a care plan. The first prototype of the platform was valued by the participants, but privacy matters and registration issues were pointed out when using a shared care plan. Additional applications to monitor health and safety will be integrated in the second prototype. This prototype will be tested on its usability, feasibility and desirability during a pilot study in spring 2016.

  12. Beyond familism: a case study of the ethics of care of a Latina caregiver of an elderly parent with dementia.

    PubMed

    Flores, Yvette G; Hinton, Ladson; Barker, Judith C; Franz, Carol E; Velasquez, Alexandra

    2009-12-01

    Caregiving for elderly relatives with dementia is described as a stressful and challenging obligation that disproportionately befalls women in families. Studies of Latina caregivers tend to focus on how the cultural value of familism shapes caregiving expectations and experiences. However, these studies tend not to distinguish between familism as ideology and familism as practice to evaluate how caregiving may or may not conform to prescribed cultural scripts nor to examine the ethics of care utilized by family caregivers. Through a case study of a second-generation daughter, we explore the nuances of an ethics of care that constitute her caregiving experiences and the tensions generated by efforts to respect divergent cultural mandates. PMID:19894151

  13. Negotiating the balance: the triadic relationship between spousal caregivers, people with dementia and Admiral Nurses.

    PubMed

    Quinn, Catherine; Clare, Linda; McGuinness, Ted; Woods, Robert T

    2013-09-01

    Informal caregiving for a person with dementia often takes place within a health care triad, whose members include the caregiver, the care-recipient and the health care-professional. The aim of the current study was to explore how the members work together with this triadic context. Six spousal caregiving dyads and the three Admiral Nurses who worked with the couples were interviewed. Transcripts of these interviews were analysed to form six case studies, each containing the perspectives of the three members of the triad. The processes emerging in these case studies were encompassed under an overarching dynamic process of 'negotiating the balance'. This describes the ongoing struggle of the members to balance the views of the other members against their own needs. Coalitions could occur as members worked together to tackle problems. The findings of this study highlight the importance of exploring the perspectives of all members of the triad. This should help health care professionals to improve the quality of the support they provide to caregivers and care-recipients.

  14. Virtually supportive: A feasibility pilot study of an online support group for dementia caregivers in a 3D virtual environment

    PubMed Central

    O’Connor, Mary-Frances; Arizmendi, Brian J.; Kaszniak, Alfred W.

    2014-01-01

    Caregiver support groups effectively reduce stress from caring for someone with dementia. These same demands can prevent participation in a group. The present feasibility study investigated a virtual online caregiver support group to bring the support group into the home. While online groups have been shown to be helpful, submissions to a message board (vs. live conversation) can feel impersonal. By using avatars, participants interacted via real-time chat in a virtual environment in an 8-week support group. Data indicated lower levels of perceived stress, depression and loneliness across participants. Importantly, satisfaction reports also indicate that caregivers overcame the barriers to participation, and had a strong sense of the group’s presence. This study provides the framework for an accessible and low cost online support group for a dementia caregiver. The study demonstrates the feasibility of interactive group in a virtual environment for engaging members in meaningful interaction. PMID:24984911

  15. Translating Evidence-Based Dementia Caregiving Interventions into Practice: State-of-the-Science and Next Steps

    PubMed Central

    Gitlin, Laura N.; Marx, Katherine; Stanley, Ian H.; Hodgson, Nancy

    2015-01-01

    Over the past 3 decades, more than 200 dementia caregiver interventions have been tested in randomized clinical trials and found to be efficacious. Few programs have been translated for delivery in various service contexts, and they remain inaccessible to the 15+ million dementia family caregivers in the United States. This article examines translational efforts and offers a vision for more rapid advancement in this area. We summarize the evidence for caregiver interventions, review published translational efforts, and recommend future directions to bridge the research-practice fissure in this area. We suggest that as caregiver interventions are tested external to service contexts, a translational phase is required. Yet, this is hampered by evidentiary gaps, lack of theory to understand implementation challenges, insufficient funding and unsupportive payment structures for sustaining programs. We propose ways to advance translational activities and future research with practical applications. PMID:26035597

  16. Translating Evidence-Based Dementia Caregiving Interventions into Practice: State-of-the-Science and Next Steps.

    PubMed

    Gitlin, Laura N; Marx, Katherine; Stanley, Ian H; Hodgson, Nancy

    2015-04-01

    Over the past 3 decades, more than 200 dementia caregiver interventions have been tested in randomized clinical trials and found to be efficacious. Few programs have been translated for delivery in various service contexts, and they remain inaccessible to the 15+ million dementia family caregivers in the United States. This article examines translational efforts and offers a vision for more rapid advancement in this area. We summarize the evidence for caregiver interventions, review published translational efforts, and recommend future directions to bridge the research-practice fissure in this area. We suggest that as caregiver interventions are tested external to service contexts, a translational phase is required. Yet, this is hampered by evidentiary gaps, lack of theory to understand implementation challenges, insufficient funding and unsupportive payment structures for sustaining programs. We propose ways to advance translational activities and future research with practical applications.

  17. Caregiver outcomes of partners in dementia care: effect of a care coordination program for veterans with dementia and their family members and friends.

    PubMed

    Bass, David M; Judge, Katherine S; Snow, A Lynn; Wilson, Nancy L; Morgan, Robert; Looman, Wendy J; McCarthy, Catherine A; Maslow, Katie; Moye, Jennifer A; Randazzo, Ronda; Garcia-Maldonado, Maurilio; Elbein, Richard; Odenheimer, Germaine; Kunik, Mark E

    2013-08-01

    The objective is to test the effectiveness of Partners in Dementia Care (PDC), a care-coordination program that integrates and improves access to medical and nonmedical services, while strengthening the informal care network and providing information, coaching, and emotional support. PDC was delivered via a partnership between Veterans Affairs (VA) Medical Centers (VAMCs) and Alzheimer's Association chapters, for caregivers of veterans with dementia living in the community and receiving primary care from the VA. The initial sample was 486 caregivers of 508 veterans with diagnosed dementia. Outcomes were evaluated for 394 and 324 caregivers who completed 6- and 12- month follow-up, respectively. PDC had a standardized protocol that included assessment and reassessment, action planning, and ongoing monitoring. It was delivered by telephone and e-mail for cost efficiency and the ability to handle caseloads of 100 to 125. Care coordinators from VAMCs and Alzheimer's Association chapters worked as a team using a shared computerized record. A variety of caregiver outcomes was measured after 6 and 12 months. Intervention group caregivers had significant improvements in outcomes representing unmet needs, three types of caregiver strains, depression, and two support resources. Most improvements were evident after 6 months, with more-limited improvements from Months 6 to 12. Some outcomes improved for all caregivers, whereas some improved for caregivers experiencing more initial difficulties or caring for veterans with more-severe impairments. PDC is a promising model that improves linkages between healthcare services and community services, which is a goal of several new national initiatives such as the National Plan to Address Alzheimer's Disease and a proposed amendment to the Older Americans Act. PMID:23869899

  18. Herbal products and other supplements: use by elderly veterans with depression and dementia and their caregivers.

    PubMed

    Kales, Helen C; Blow, Frederic C; Welsh, Deborah E; Mellow, Alan M

    2004-03-01

    The use of herbal products and other "natural" supplements among the US population is on the rise. Limited data suggest that such use among the elderly may correlate with higher education levels as well as psychiatric symptoms. The authors examined herbal/supplement use among elderly veterans with depression and/or dementia (n = 82) and their primarily elderly caregivers (n = 56). Eighteen percent of subjects and 16% of caregivers used herbals/supplements. Seventy-five percent of subjects who used these products during the study period were also taking potentially interacting medications. Given the prior association of herbal/supplement use with higher education levels, a surprising number of elderly veterans with depression and/or dementia (the majority of whom had high school or less education) used these products. As evidenced by missing documentation in many physician notes, subjects may not have discussed their usage of herbals/supplements with their physicians. In light of the possibility of potentially harmful drug interactions, physicians who treat elderly patients should regularly inquire about the use of these products.

  19. Effectiveness of an Internet Intervention for Family Caregivers of People with Dementia: Results of a Randomized Controlled Trial

    PubMed Central

    Blom, Marco M.; Zarit, Steven H.; Groot Zwaaftink, Rob B. M.; Cuijpers, Pim; Pot, Anne Margriet

    2015-01-01

    Background The World Health Organization stresses the importance of accessible and (cost)effective caregiver support, given the expected increase in the number of people with dementia and the detrimental impact on the mental health of family caregivers. Methods This study assessed the effectiveness of the Internet intervention ‘Mastery over Dementia’. In a RCT, 251 caregivers, of whom six were lost at baseline, were randomly assigned to two groups. Caregivers in the experimental group (N = 149) were compared to caregivers who received a minimal intervention consisting of e-bulletins (N = 96). Outcomes were symptoms of depression (Center for Epidemiologic Studies Depression Scale: CES-D) and anxiety (Hospital Anxiety and Depression Scale: HADS-A). All data were collected via the Internet, and an intention-to-treat analysis was carried out. Results Almost all caregivers were spouses or children (in-law). They were predominantly female and lived with the care recipient in the same household. Age of the caregivers varied from 26 to 87 years. Level of education varied from primary school to university, with almost half of them holding a bachelor’s degree or higher. Regression analyses showed that caregivers in the experimental group showed significantly lower symptoms of depression (p = .034) and anxiety (p = .007) post intervention after adjustment for baseline differences in the primary outcome scores and the functional status of the patients with dementia. Effect sizes were moderate for symptoms of anxiety (.48) and small for depressive symptoms (.26). Conclusions The Internet course ‘Mastery over Dementia’ offers an effective treatment for family caregivers of people with dementia reducing symptoms of depression and anxiety. The results of this study justify further development of Internet interventions for family caregivers of people with dementia and suggest that such interventions are promising for keeping support for family caregivers accessible and

  20. Effectiveness of a Fotonovela for Reducing Depression and Stress in Latino Dementia Family Caregivers

    PubMed Central

    Gallagher-Thompson, Dolores; Tzuang, Marian; Hinton, Ladson; Alvarez, Paula; Rengifo, Johanna; Valverde, Irene; Chen, Nancy; Emrani, Tara; Thompson, Larry W.

    2014-01-01

    The clinical need to address stress and depression in Latino dementia caregivers (CGs) combined with low health literacy and less accurate knowledge of dementia motivated the development of a pictorial tool (called a fotonovela {FN}) to teach a) coping skills for CG stress, b) self -assessment of depression, and c) encourage improved utilization of available resources. To test the effectiveness of the FN, 110 of 147 Latino CGs, who were randomly assigned to the Fotonovela Condition (FNC) or the Usual Information Condition (UIC), were included in the final analyses. Self-report measures were given at baseline and post intervention. Results showed that FNC CGs demonstrated significantly greater reductions in level of depressive symptoms than UIC CGs. A significant decrease in level of stress due to memory and behavioral problems exhibited by their loved ones was similar in both groups. The FNC CGs reported that the FN was more helpful and that they referred to it more often than the UIC CGs did with regard to the informational materials they were provided about dementia. In conclusion, a culturally tailored FN can be an effective tool for Latino CGs given their high unmet needs for assistance and various barriers in accessing resources. PMID:25590939

  1. The experience of high levels of grief in caregivers of persons with Alzheimer's disease and related dementia.

    PubMed

    Sanders, Sara; Ott, Carol H; Kelber, Sheryl T; Noonan, Patricia

    2008-01-01

    An abundance of literature on caregivers of individuals with dementia has been written since the mid-1980s. However, most of this literature focused on the experience of stress, burden, and depression in caregivers, thus excluding the grief experience that also accompanies the caregiving experience. The purpose of this multimethod study is to describe the lived experience of 44 spouses and adult children who are caregivers of persons with Alzheimer's disease and related dementias (ADRD) and scored high on the Marwit and Meuser Caregiver Grief Inventory, Short Form (MM-CGI-SF). This study presents qualitative results from a mixed-methods descriptive study (N = 201). Seven themes emerged from the qualitative data that detailed the caregiving experience of the individuals with high grief: (a) yearning for the past, (b) regret and guilt, (c) isolation, (d) restricted freedom, (e) life stressors, (f) systemic issues, and (g) coping strategies. The first 2 themes reflect grief reactions, whereas isolation, restricted freedom, life stressors, and systemic issues possessed elements of both grief and caregiver burden and stress. Coping strategies used by this group of caregivers included spiritual faith, social supports, and pets. Quantitative analysis confirmed that these themes are unique to individuals with high levels of grief compared with those with moderate/low levels of grief, except for the coping strategies of social support and spiritual faith. Caregivers with high levels of grief may benefit from supportive interventions that are based on reducing feelings of isolation, lack of freedom, and increased guilt and regret, while also addressing feelings of loss. Interventions that facilitate building a supportive network are suggested. Using a screening tool such as the MM-CGI-SF will help in identifying caregivers with high levels of grief who may be in need of additional support. PMID:18958942

  2. Translation of a Dementia Caregiver Intervention for Delivery in Homecare as a Reimbursable Medicare Service: Outcomes and Lessons Learned

    ERIC Educational Resources Information Center

    Gitlin, Laura N.; Jacobs, Mimi; Earland, Tracey Vause

    2010-01-01

    Purpose: Families of dementia patients receiving skilled homecare do not receive supportive services. We evaluated whether a proven intervention, Environmental Skill-building Program (ESP), which reduces caregiver burden and enhances skills managing patient functioning, can be integrated into homecare practices of occupational therapists (OTs) and…

  3. Grief and Personal Growth Experience of Spouses and Adult-Child Caregivers of Individuals with Alzheimer's Disease and Related Dementias

    ERIC Educational Resources Information Center

    Ott, Carol H.; Sanders, Sara; Kelber, Sheryl T.

    2007-01-01

    Purpose: The purpose of this study was to describe the grief and personal growth experience of spouses and adult children of individuals with Alzheimer's disease and related dementias and the factors contributing to these experiences. Design and Methods: We used a modification of the Marwit-Meuser-Sanders Caregiver Grief model to examine the…

  4. A Speech-Language Pathologist's Guide to Creating a Support Group for Caregivers of Persons with Dementia

    ERIC Educational Resources Information Center

    Morrow-Odom, K. Leigh; Robbins, Sarah M.

    2012-01-01

    The purpose of this article is to provide basic guidelines to successfully establish a support group for caregivers of persons with dementia. Support groups should provide its members with a community of support, as well as coping and management strategies to improve daily function of loved ones. This should improve the care provided, and the…

  5. Partners in Caregiving in a Special Care Environment: Cooperative Communication between Staff and Families on Dementia Units

    ERIC Educational Resources Information Center

    Robison, Julie; Curry, Leslie; Gruman, Cynthia; Porter, Martha; Henderson, Charles R., Jr.; Pillemer, Karl

    2007-01-01

    Purpose: This article reports the results of a randomized, controlled evaluation of Partners in Caregiving in a Special Care Environment, an intervention designed to improve communication and cooperation between staff and families of residents in nursing home dementia programs. Design and Methods: Participants included 388 family members and 384…

  6. Assistive devices caregivers use and find helpful to manage problem behaviors of dementia

    PubMed Central

    Gitlin, Laura N.; Winter, Laraine; Dennis, Marie P.

    2014-01-01

    Purpose Use of assistive devices in caring for individuals with dementia has not been systematically examined, particularly as it concerns managing behavioral symptoms. We tested a nonpharmacologic intervention to manage behaviors that involved instructing families in effective communication techniques, simplifying tasks and the home environment and using assistive devices. This paper describes the assistive devices provided to families assigned to intervention, extent of use of issued devices, their perceived helpfulness, and cost. Design and Methods Following each treatment session, occupational therapists (OT) documented time spent training in the use of strategies to manage problem behaviors. For families receiving assistive devices, OTs asked caregivers after 4 months whether they continued to use the device (yes/no), and extent to which it helped manage the targeted problems (not at all, somewhat, very helpful). We also tracked the costs associated with ordering, delivering and installing devices. Results Of 272 caregiver-patient dyads enrolled in the original trial, 136 were randomized to the intervention group, of whom 63 received one or more assistive devices. Of 13 intervention sessions, an average of 4 (31%) involved discussing or training caregivers in using assistive devices. A total of 197 devices (3 per dyad) were issued of which 87.6% were reported in use at 4 months. Caregivers reported that overall, devices were somewhat to very helpful. Devices ranged in cost from US$4.80 to US$282.93 with an average cost per dyad of US$152.52(SD=US$102.70) which included the device, its ordering, delivery and installation. PMID:25429254

  7. Relative Preservation of Advanced Activities in Daily Living among Patients with Mild-to-Moderate Dementia in the Community and Overview of Support Provided by Family Caregivers

    PubMed Central

    Takechi, Hajime; Kokuryu, Atsuko; Kubota, Tomoko; Yamada, Hiroko

    2012-01-01

    Little is known about the extent to which advanced activities of daily living among patients with dementia are preserved and how family caregivers of these patients support them in the community. In this cross-sectional assessment of pairs of patients with dementia and their family caregivers, we evaluated basic, instrumental, and advanced activities of daily living by comparing past and present status observed by caregivers with subjective estimations by patients with dementia. We also asked about ways in which support was provided by family caregivers. Thirty-nine pairs of patients with dementia and caregivers who presented to our memory clinic were interviewed. The mean age of patients with dementia was 75.3 ± 7.0 years, and Mini-Mental State Examination scores were 22.3 ± 3.4. We found relative preservation of advanced activities of daily living compared with instrumental activities of daily living. Caregivers provided instrumental, informational, and reminding support to patients with dementia. These findings may reinforce the concept of person-centered support of patients with dementia in the community. PMID:22811947

  8. Demographic and Socioenvironmental Characteristics of Black and White Community-Dwelling Caregivers and Care Recipients' Behavioral and Psychological Symptoms of Dementia.

    PubMed

    Cothran, Fawn A; Farran, Carol J; Barnes, Lisa L; Whall, Ann L; Redman, Richard W; Struble, Laura M; Dunkle, Ruth E; Fogg, Louis

    2015-01-01

    The purpose of the current study was to compare the association between caregiver background characteristics and care recipients' behavioral and psychological symptoms of dementia (BPSD) in Black and White community-dwelling family caregivers. Using logistic regression models, caregiver/care recipient dyad data from the Aging Demographics and Memory Study were used to describe associations between caregiver background characteristics (i.e., demographic and socioenvironmental variables) and care recipients' BPSD (i.e., hallucinations, delusions, agitation, depression) (N = 755). Results showed that Black caregivers were more likely to be female, younger, an adult child, have less education, and live in the South (p ≤ 0.05); they were less likely to be married. Several caregiver background characteristics were associated with care recipients' depression and agitation, but not with other BPSD. Caregiver background characteristics may play a role in the recognition and reporting of BPSD and should be considered when working with families of individuals with dementia.

  9. Home-based exercise and support programme for people with dementia and their caregivers: study protocol of a randomised controlled trial

    PubMed Central

    2011-01-01

    Background Dementia affects the mood of people with dementia but also of their caregivers. In the coming years, the number of people with dementia will increase worldwide and most of them will continue to live in the community as long as possible. Home-based psychosocial interventions reducing the depressive symptoms of both people with dementia and their caregivers in their own home are highly needed. Methods/Design This manuscript describes the design of a Randomised Controlled Trial (RCT) of the effects of a home-based exercise and support programme for people with dementia and their caregivers. The aim is to randomly assign 156 dyads (caregiver and dementia diagnosed person) to an intervention group or a comparison group. The experimental group receives a home programme in which exercise and support for the people with dementia and their caregivers are combined and integrated. The comparison group receives a minimal intervention. Primary outcomes are physical health (people with dementia) and mood (people with dementia and caregivers). In addition, to get more insight in the working components of the intervention and the impact of the intervention on the relationship of the dyads a qualitative sub-study is carried out. Discussion This study aims to contribute to an evidence-based treatment to reduce depressive symptoms among people with dementia and their caregivers independently living in the community. Trial Registration The study has been registered at the Netherlands National Trial Register (NTR), which is connected to the International Clinical Trials Registry Platform of the WHO. Trial number: NTR1802. PMID:22117691

  10. A pilot study of immune and mood outcomes of a community-based intervention for dementia caregivers: the PLST intervention.

    PubMed

    Garand, Linda; Buckwalter, Kathleen C; Lubaroff, David; Tripp-Reimer, Toni; Frantz, Rita A; Ansley, Timothy N

    2002-08-01

    Providing care to a family member with dementia is conceptualized as a chronic stressor with adverse psychological and physical effects. The purpose of this pilot study was to evaluate mood and immune outcomes of caregivers exposed to a community-based psychoeducational nursing intervention based on the progressively lowered stress threshold (PLST) model. The PLST intervention is designed to strengthen the psychological resources of dementia caregivers by teaching methods of preventing and/or managing behavioral problems exhibited by the person with dementia. Mood and immune outcomes were compared between caregivers randomly assigned to receive either the PLST or a comparison intervention. Results of this pilot study suggest that caregivers who received the PLST intervention showed significantly stronger T-cell proliferative responses to both PHA and ConA, indicating an improvement in T-cell immune function immediately after the in-home intervention (T2) and again after 6 months of telephone support for application of the PLST model (T3). Findings do not support the hypothesis that the PLST intervention had a significant effect on total mood disturbance or natural killer cell cytotoxicity over the course of the study.

  11. The relationship between religiosity and health behaviors in female caregivers of older adults with dementia.

    PubMed

    Rabinowitz, Yaron G; Mausbach, Brent T; Atkinson, Philip J; Gallagher-Thompson, Dolores

    2009-11-01

    The current study explored the relationship between three dimensions of religiosity: (a) organizational religiosity (e.g. attendance at religious events), (b) non-organizational religiosity (e.g. prayer), and (c) subjective religiosity (e.g. importance of religion) and caregiver health behavior patterns in a sample of Latina and Caucasian female caregivers of older adult relatives with dementia. It was hypothesized that religiosity would have a significant association with reduced cumulative health risk as determined by an index of health behaviors. It was also hypothesized that, when examining the individual health behaviors subsumed in the overarching index, religiosity would be positively associated with adaptive health behaviors like exercise and negatively associated with health risk behaviors like smoking. Amongst Caucasians, increased subjective religiosity was related to increased cumulative health risk. Conversely, in Latinas, non-organizational religiosity was positively correlated with improved dietary practices (reduced dietary restriction). Increased levels of subjective religiosity were significantly associated with decreased maintenance of a routine exercise regimen across ethnic groups. Recommendations for clinicians and religious leaders, and avenues of future research are discussed.

  12. Vulnerability to health problems in female informal caregivers of persons with HIV/AIDS and age-related dementias.

    PubMed

    Flaskerud, J H; Lee, P

    2001-01-01

    The health of informal caregivers is often studied from the perspective of caregivers' and care receivers' personal and interpersonal characteristics. This study offers an alternative explanation based on a vulnerable populations framework and considers the role of resource availability to the health status of informal caregivers (n=76). Caregivers in a convenience sample were females of diverse ethnicity and socioeconomic status, and care recipients were diagnosed with human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) or age-related dementias (ARD). Personal interviews using structured instruments were conducted with caregivers who were attending outpatient clinics at a public hospital and a VA hospital. Instruments included the Center for Epidemiologic Studies Depression-Scale (CES-D), the Global Health Assessment (GHA), the Activities of Daily Living Scale (ADL), the Memory and Behavior Problems Checklist (MBPC) and items from the Symptom Checklist-90 (SCL-90) measuring anger, anxiety and loneliness. Caregivers were experiencing both physical and mental health problems. Regression analyses were used to examine the relationships among resources available to caregivers, conditions that put caregivers at risk for poorer health, and health status itself. Analyses were conducted for each group of caregivers separately (HIV and ARD) and for the total group, using depressive symptoms and perception of physical health as dependent variables. In caregivers of people with HIV/AIDS (PWHIV), caregiver distress over care recipient symptoms, anxiety and education were related to depressive symptoms. Depressive symptoms, anger and functional status of the PWHIV were related to caregivers' perception of poorer physical health. In caregivers of people with ARD, there were no significant predictors for depressive symptoms or perception of physical health. In the total group of caregivers, lower income and more anger were related to depressive symptom

  13. Theory of mind impairment in patients with behavioural variant fronto-temporal dementia (bv-FTD) increases caregiver burden

    PubMed Central

    Brioschi Guevara, Andrea; Knutson, Kristine M.; Wassermann, Eric M.; Pulaski, Sarah; Grafman, Jordan; Krueger, Frank

    2015-01-01

    Background: Theory of mind (ToM), the capacity to infer the intention, beliefs and emotional states of others, is frequently impaired in behavioural variant fronto-temporal dementia patients (bv-FTDp); however, its impact on caregiver burden is unexplored. Setting: National Institute of Neurological Disorders and Stroke, National Institutes of Health. Subjects: bv-FTDp (n = 28), a subgroup of their caregivers (n = 20) and healthy controls (n = 32). Methods: we applied a faux-pas (FP) task as a ToM measure in bv-FTDp and healthy controls and the Zarit Burden Interview as a measure of burden in patients' caregivers. Patients underwent structural MRI; we used voxel-based morphometry to examine relationships between regional atrophy and ToM impairment and caregiver burden. Results: FP task performance was impaired in bv-FTDp and negatively associated with caregiver burden. Atrophy was found in areas involved in ToM. Caregiver burden increased with greater atrophy in left lateral premotor cortex, a region associated in animal models with the presence of mirror neurons, possibly involved in empathy. Conclusion: ToM impairment in bv-FTDp is associated with increased caregiver burden. PMID:26025914

  14. Health Literacy Needs Related to Incontinence and Skin Damage among Family and Friend Caregivers of Individuals with Dementia

    PubMed Central

    Rolnick, Cheri; Jackson, Jody; Arntson, Casey; Mullins, Jean; Hepburn, Kenneth

    2013-01-01

    Purpose The purpose of this study was to describe health literacy needs related to incontinence and skin care among family or friend caregivers of individuals with Alzheimer’s disease and develop supportive and educational materials that address these needs. Design Descriptive Subjects and Settings The sample included 48 family/friend adult caregivers of individuals who had advanced dementia. Caregivers were spouses (44%), daughters (31%) or extended family members/friends (25%) recruited from community-based agencies, aged 64 (14) years (mean (SD)), and 75% female. Nearly half (48%) had a racially or ethnically diverse background. Methods Focus groups, interviews, and written surveys were conducted to assess health literacy needs of AD caregivers related to incontinence and skin care; verbal responses were audiotaped, transcribed, and summarized. To address these needs, a set of educational and supportive materials were developed whose content was directed by caregiver responses and supported by a literature review of current evidence and consultation with clinical and research experts. Study procedures were guided by advisory committee of AD caregivers. Results Caregivers had numerous health literacy needs related to incontinence and skin care; areas of need were categorized into knowledge, skills, and attitudes. Caregivers expressed a need to validate the health literacy they possessed. Fourteen educational and supportive documents were developed to address these needs. Conclusion Materials developed in this study are suitable to incorporate into interventions that support caregivers of persons with Alzheimer’s disease. They offer the potential to raise health literacy and care capacity of caregivers, increase communication with healthcare providers, and improve health outcomes of care recipients. PMID:24448620

  15. Structured interviews examining the burden, coping, self-efficacy, and quality of life among family caregivers of persons with dementia in Singapore.

    PubMed

    Tay, Kay Chai Peter; Seow, Chuen Chai Dennis; Xiao, Chunxiang; Lee, Hui Min Julian; Chiu, Helen F K; Chan, Sally Wai-Chi

    2016-03-01

    Dementia is a global health issue and the effects on caregivers are substantial. The study aimed to examine the associations of burden, coping, self-efficacy with quality of life among family caregivers of persons with dementia in Singapore. Structured interviews were conducted in a convenience sample of 84 family caregivers caring and seeking clinical care for the persons with dementia in an outpatient clinic of a public hospital in Singapore. The outcome measures included the Family Burden Interview Schedule, Family Crisis Oriented Personal Evaluation Scale, General Perceived Self-Efficacy Scale, and World Health Organization Quality of Life Scale - Brief Version. In general, significant correlations were observed between the quality of life scores with coping strategy and family burden scores, but not between the coping strategy and family burden scores. Compared to demographic factors such as caregiver age and household income, psychosocial factors including family burden, coping strategies, and self-efficacy demonstrated greater association with quality of life in the participants. However, the dynamics of these associations will change with an increasing population of persons with dementia, decreasing nuclear family size, and predicted changes in family living arrangements for the persons with dementia in future. As such, it necessitates continuous study examining the needs and concerns of family caregivers and the relevance of ongoing interventions specific to caregivers of persons with dementia.

  16. With Love from Me to Me: Using Songwriting to Teach Coping Skills to Caregivers of Those with Alzheimer's and Other Dementias

    ERIC Educational Resources Information Center

    Klein, Claire M.; Silverman, Michael J.

    2012-01-01

    This pilot intervention compared the effects of songwriting and discussion as methods for teaching self-care to caregivers of those with dementia. The investigator led a psychoeducational discussion and a songwriting intervention with a group of caregivers, focusing on self-care. Participants answered two open-ended questions that were analyzed by…

  17. Mental health and diurnal salivary cortisol patterns among African American and European American female dementia family caregivers.

    PubMed

    McCallum, T J; Sorocco, Kristen H; Fritsch, Thomas

    2006-08-01

    Using a sociocultural stress and coping model, this pilot study examines the influence of depressive symptoms and stress on diurnal salivary cortisol patterns among African American (N=30) and European American (N=24) female dementia caregivers and noncaregivers (African American, N=48; European American, N=15). Caregiving participants completed the Center for Epidemiological Studies Depression Scale (CES-D), Perceived Stress Scale (PSS), and Stress-Related Growth Scale (SRGS) as respective measures of depressive symptoms, stress, and stress resilience. Participants also collected five saliva samples daily for two consecutive days. African American caregivers scored significantly higher than European American caregivers on the SRGS, but they did not differ on the PSS and CES-D scales. Regression analyses with age, ethnicity, caregiving status, and depressive symptoms as predictors, and cortisol slope as criterion, showed that only age and ethnicity predicted cortisol slope. African Americans had flatter slopes than the European Americans sampled, regardless of caregiving status. Findings highlight the role of cultural beliefs and of ethnicity in explaining cortisol function. PMID:16861373

  18. "Learning to Become a Family Caregiver" Efficacy of an Intervention Program for Caregivers Following Diagnosis of Dementia in a Relative

    ERIC Educational Resources Information Center

    Ducharme, Francine C.; Levesque, Louise L.; Lachance, Lise M.; Kergoat, Marie-Jeanne; Legault, Alain J.; Beaudet, Line M.; Zarit, Steven H.

    2011-01-01

    Purpose: The purpose of this experimental study was to test the efficacy of a psychoeducational individual program conceived to facilitate transition to the caregiver role following diagnosis of Alzheimer disease in a relative. Design and Methods: Caregivers were recruited in memory clinics and randomized to an experimental group (n = 62) or a…

  19. Relationship between first treatment contact and supernatural beliefs in caregivers of patients with schizophrenia.

    PubMed

    Grover, S; Nebhinani, N; Chakrabarti, S; Shah, R; Avasthi, A

    2014-06-01

    OBJECTIVE. To explore the relationship between attribution of symptoms to supernatural beliefs and first treatment contact in caregivers of patients with schizophrenia attending a tertiary care hospital located in North India. METHODS. A total of 122 caregivers (aged ≥ 18 years, staying with patient ≥ 1 year and involved in patients' care) of consecutive patients with diagnosis of schizophrenia (according to the ICD-10) were evaluated for their supernatural beliefs and first treatment contact. RESULTS. The first treatment contact was a government or private psychiatrist in slightly more than half (53.3%) of the patients, while it was faith healers in 23.8% of the patients. Around three quarters (74.6%) of the caregivers attributed patients' symptoms to ≥ 1 supernatural belief (like sorcery / witchcraft, ghosts, spirit intrusion, divine wrath, planetary influences, evil spirits, and bad deeds in previous life) and more than half (57.4%) of the caregivers attributed patients' symptoms to > 1 supernatural belief. It was observed that those who contacted faith healers for their patients' treatment had significantly higher attribution of the symptoms to supernatural causes. CONCLUSIONS. Supernatural beliefs were common in caregivers of patients with schizophrenia and the majority attributed their patients' symptoms to these beliefs. It signifies an urgent need for mental health literacy in India. PMID:24986200

  20. Biological, psychological and clinical markers of caregiver's stress in impaired elderly with dementia and age-related disease.

    PubMed

    Neri, M; Bonati, P A; Pinelli, M; Borella, P; Tolve, I; Nigro, N

    2007-01-01

    Stress refers to the experience, produced through a person-environment transaction, that results in psychological or physiological distress. Everyday stress or hassles have a larger impact on health, in this frame caring for elderly disabled and/or demented persons have been shown to be a chronic role strain. The concept of stress and strain encompasses different levels of individual functioning (physiological, cognitive, affective, social). We studied whether 3 different distressing conditions show (i) different profiles in biological, psychological and clinical indices of stress, and (ii) different response to temporary environmental manipulation. A sample of 29 caregivers of elderly subjects temporarily institutionalized for (i) respite program, (ii) behavioral psychological symptoms of dementia (BPSD) in dementia-control and, (iii) a rehabilitation program after hip fracture, was assessed with clinical, psychological and biological measures. The BPSD appear to be the most powerful distressing factor, both at the beginning and at the end of the study. On the whole, to an improvement of patient's clinical picture, it corresponds only a partial improvement in stress indices of the caregiver. The slope of biological indices don not parallel those of psychological ones. Among psychometric indices, the pattern of recovery differentiate affective and cognitive domains. The "respite" care condition seems to be the less effective in reducing stress in the caregivers. The stress process should be considered in its different domains to allow a tailored intervention.

  1. Caregiving in Dementia and its Impact on Psychological Functioning and Health-Related Quality of Life: Findings from a Colombian Sample.

    PubMed

    Moreno, Jhon Alexander; Nicholls, Elizabeth; Ojeda, Natalia; De los Reyes-Aragón, Carlos José; Rivera, Diego; Arango-Lasprilla, Juan Carlos

    2015-12-01

    Existing published studies about health-related quality of life (HRQOL) in caregivers of dementia patients living in Latin American countries are very limited. However, cultural aspects, personal values, and social structure may affect the way caregivers experience their role in different societies. The current study investigated the relationship between HRQOL and psychological factors using a cross-sectional design. The sample consisted of 102 informal caregivers of patients with dementia from Bogotá, Colombia, South America. Measures included the Patient Health Questionnaire (PHQ-9) for depression, the Satisfaction with Life Scale (SWLS), the Zarit Burden Interview, and the Short Health Questionnaire (SF36) for HRQOL. Canonical correlations revealed that there was a significant relationship between caregivers' mental health and HRQOL, such that caregivers with better satisfaction with life and less symptoms of depression had more vitality and better general health. There is a strong relationship between mental health and health-related quality of life in Colombian caregivers of dementia patients living in their country of origin. Specific aspects of mental health, including satisfaction with life and depression, need to be addressed in order to improve caregivers' quality of life. Given that mental health care resources may be scarce in Latin American countries, culturally appropriate interventions should focus on preventing/treating depression and promote life satisfaction, as a way to improve their quality of life.

  2. Caregiving in Dementia and its Impact on Psychological Functioning and Health-Related Quality of Life: Findings from a Colombian Sample.

    PubMed

    Moreno, Jhon Alexander; Nicholls, Elizabeth; Ojeda, Natalia; De los Reyes-Aragón, Carlos José; Rivera, Diego; Arango-Lasprilla, Juan Carlos

    2015-12-01

    Existing published studies about health-related quality of life (HRQOL) in caregivers of dementia patients living in Latin American countries are very limited. However, cultural aspects, personal values, and social structure may affect the way caregivers experience their role in different societies. The current study investigated the relationship between HRQOL and psychological factors using a cross-sectional design. The sample consisted of 102 informal caregivers of patients with dementia from Bogotá, Colombia, South America. Measures included the Patient Health Questionnaire (PHQ-9) for depression, the Satisfaction with Life Scale (SWLS), the Zarit Burden Interview, and the Short Health Questionnaire (SF36) for HRQOL. Canonical correlations revealed that there was a significant relationship between caregivers' mental health and HRQOL, such that caregivers with better satisfaction with life and less symptoms of depression had more vitality and better general health. There is a strong relationship between mental health and health-related quality of life in Colombian caregivers of dementia patients living in their country of origin. Specific aspects of mental health, including satisfaction with life and depression, need to be addressed in order to improve caregivers' quality of life. Given that mental health care resources may be scarce in Latin American countries, culturally appropriate interventions should focus on preventing/treating depression and promote life satisfaction, as a way to improve their quality of life. PMID:26290365

  3. Caregivers for Dementia Patients: Complex Determinants of Well-Being and Burden.

    ERIC Educational Resources Information Center

    Gwyther, Lisa P.; George, Linda K.

    1986-01-01

    This symposium includes three papers that provide new insights into the caregiving experience. Papers focus upon a group of caregivers who appear to be at special risk for negative outcomes, the family caregivers of older persons suffering from Alzheimer's Disease or a related disorder. (Author/ABB)

  4. Medical management of frontotemporal dementias: the importance of the caregiver in symptom assessment and guidance of treatment strategies.

    PubMed

    Jicha, Gregory A

    2011-11-01

    There are no currently Food and Drug Administration-approved or proven off-label treatments for the frontotemporal dementias (FTD). Clinicians, caregivers, and patients struggle regularly to find therapeutic regimens that can alleviate the problematic behavioral and cognitive symptoms associated with these devastating conditions. Success is "hit or miss" and the lessons learned are largely anecdotal to date. Drug discovery in this area has been largely hampered by the heterogeneous clinical presentations and pathological phenotypes of disease that represent significant obstacles to progress in this area. Biologically, plausible treatment strategies include the use of antidepressants (selective serotonin reuptake inhibitors or serotonin-specific reuptake inhibitor and monoamine oxidase inhibitors), acetylcholinesterase inhibitors, N-methyl-D-aspartic acid antagonists, mood stabilizers, antipsychotics, stimulants, antihypertensives, and agents that may ameliorate the symptoms of parkinsonism, pseudobulbar affect, and motor neuron disease that can often coexist with FTD. These medications all carry potential risks as well as possible benefits for the person suffering from FTD, and a clear understanding of these factors is critical in selecting an appropriate therapeutic regimen to maximize cognition and daily functions, reduce behavioral symptoms, and alleviate caregiver burden in an individual patient. The role of the caregiver in tracking and reporting of symptoms and the effects of individual therapeutic interventions is pivotal in this process. This manuscript highlights the importance of establishing an effective therapeutic partnership between the physician and caregiver in the medical management of the person suffering from FTD.

  5. Medical Management of Frontotemporal Dementias: The Importance of the Caregiver in Symptom Assessment and Guidance of Treatment Strategies

    PubMed Central

    2011-01-01

    There are no currently Food and Drug Administration-approved or proven off-label treatments for the frontotemporal dementias (FTD). Clinicians, care-givers, and patients struggle regularly to find therapeutic regimens that can alleviate the problematic behavioral and cognitive symptoms associated with these devastating conditions. Success is “hit or miss” and the lessons learned are largely anecdotal to date. Drug discovery in this area has been largely hampered by the heterogeneous clinical presentations and pathological phenotypes of disease that represent significant obstacles to progress in this area. Biologically, plausible treatment strategies include the use of antidepressants (selective serotonin reuptake inhibitors or serotonin-specific reuptake inhibitor and monoamine oxidase inhibitors), acetylcholinesterase inhibitors, N-methyl-D-aspartic acid antagonists, mood stabilizers, antipsychotics, stimulants, antihypertensives, and agents that may ameliorate the symptoms of parkinsonism, pseudobulbar affect, and motor neuron disease that can often coexist with FTD. These medications all carry potential risks as well as possible benefits for the person suffering from FTD, and a clear understanding of these factors is critical in selecting an appropriate therapeutic regimen to maximize cognition and daily functions, reduce behavioral symptoms, and alleviate caregiver burden in an individual patient. The role of the caregiver in tracking and reporting of symptoms and the effects of individual therapeutic interventions is pivotal in this process. This manuscript highlights the importance of establishing an effective therapeutic partnership between the physician and caregiver in the medical management of the person suffering from FTD. PMID:21647712

  6. Re-examining the relationships among dementia, stigma, and aging in immigrant Chinese and Vietnamese family caregivers

    PubMed Central

    Liu, Dandan; Hinton, Ladson; Tran, Cindy; Hinton, Devon; Barker, Judith C.

    2010-01-01

    Prior literature emphasizes that Asian Americans with dementia may be particularly vulnerable to the stigma of chronic mental illness. However, there is a dearth of empirical research to support this claim. This study examines the relationship of stigma and dementia in 32 qualitative interviews with Chinese and Vietnamese family caregivers. Stigma was a common theme in the interviews (91%). Further analysis of stigma revealed two sources: chronic mental illness stigma and stigma reflecting negative stereotypes of aging or the aged. Chinese and Vietnamese cultural views of normal aging are not a unitary category but accommodate different trajectories of aging, some more and some less desired. When applied to persons with dementia, a “normalized” but negative trajectory of aging carried with it significant stigma that was distinct from but in addition to the stigma of chronic and severe mental illness. Older Chinese and Vietnamese with dementia are thus at risk of experiencing multiple stigmas that include but go beyond the stigma associated with chronic and severe mental illness. PMID:18665444

  7. 'Journeys' in the life-writing of adult-child dementia caregivers.

    PubMed

    Zimmermann, Martina

    2013-09-01

    This article explores how Alzheimer's disease caregivers struggle under the impact of a parent's memory loss on their own personality. In particular, it analyses how caregivers perceive and, thus, present their experiences of the ever intensifying caregiving activity in terms of a 'journey'. In doing so, this work takes into account both the patient's continuing bodily as well as cognitive decline and its intricately linked influence on the caregiver's physical and emotional stability. Equally, this study investigates how caregivers portray memory loss, and how their portrayal fits into our conceptualisation of illness narratives and the culture of autobiographical writing. PMID:23728880

  8. 'Journeys' in the life-writing of adult-child dementia caregivers.

    PubMed

    Zimmermann, Martina

    2013-09-01

    This article explores how Alzheimer's disease caregivers struggle under the impact of a parent's memory loss on their own personality. In particular, it analyses how caregivers perceive and, thus, present their experiences of the ever intensifying caregiving activity in terms of a 'journey'. In doing so, this work takes into account both the patient's continuing bodily as well as cognitive decline and its intricately linked influence on the caregiver's physical and emotional stability. Equally, this study investigates how caregivers portray memory loss, and how their portrayal fits into our conceptualisation of illness narratives and the culture of autobiographical writing.

  9. Chronic grief management for dementia caregivers in transition: intervention development and implementation.

    PubMed

    Paun, Olimpia; Farran, Carol J

    2011-12-01

    Research reveals that Alzheimer's disease (AD) caregivers do not relinquish their role after placing a family member in long-term care. Caregivers report increased emotional upset around the time of placement, with sustained losses over time leading to chronic grief. Chronic grief increases caregivers' risk for depression and suicide. There are no documented interventions designed to decrease caregivers' chronic grief post placement. The Chronic Grief Management Intervention (CGMI) builds on existing evidence to target caregivers' chronic grief in the transition of a family member into long-term care. The intervention is structured into three major components: (a) knowledge, (b) communication and conflict resolution skills, and (c) chronic grief management skills. The 12-week intervention was pilot tested with 34 caregivers for feasibility and preliminary effects on caregiver skill, knowledge, chronic grief, and depression. This article presents a general study description while focusing on the development and implementation of the CGMI. PMID:22084962

  10. Perceived needs of African-American caregivers of elders with dementia.

    PubMed

    Lampley-Dallas, V T; Mold, J W; Flori, D E

    2001-02-01

    To assess the perceived needs of African-American caregivers and their expectations of the health care system, perceived level of success and satisfaction in meeting their needs, and their level of distress, we convened two focus groups at a local church in Oklahoma City, OK to discuss three questions. Responses were qualitatively analyzed for common themes. The groups comprised 13 African-American caregivers of demented elders. All participants completed a demographic form, the Zarit Burden Interview, and the Depression Scale. We found that African-American caregivers are frustrated with health care and service providers. The main differences of this group compared with other caregivers were their perceptions of racism and the absence of an available local support group. This information can serve to guide future studies in developing ways to increase caregiver satisfaction, decrease caregiver stress, and increase patient quality of life for this subgroup of caregivers.

  11. Web-Based STAR E-Learning Course Increases Empathy and Understanding in Dementia Caregivers: Results from a Randomized Controlled Trial in the Netherlands and the United Kingdom

    PubMed Central

    Meiland, Franka; van der Roest, Henriëtte; Kevern, Peter; Abiuso, Francesca; Bengtsson, Johan; Giuliano, Angele; Duca, Annalise; Sanders, Jennifer; Basnett, Fern; Nugent, Chris; Kingston, Paul; Dröes, Rose-Marie

    2015-01-01

    Background The doubling of the number of people with dementia in the coming decades coupled with the rapid decline in the working population in our graying society is expected to result in a large decrease in the number of professionals available to provide care to people with dementia. As a result, care will be supplied increasingly by untrained informal caregivers and volunteers. To promote effective care and avoid overburdening of untrained and trained caregivers, they must become properly skilled. To this end, the European Skills Training and Reskilling (STAR) project, which comprised experts from the domains of education, technology, and dementia care from 6 countries (the Netherlands, Sweden, Italy, Malta, Romania, and the United Kingdom), worked together to create and evaluate a multilingual e-learning tool. The STAR training portal provides dementia care training both for informal and formal caregivers. Objective The objective of the current study was to evaluate the user friendliness, usefulness, and impact of STAR with informal caregivers, volunteers, and professional caregivers. Methods For 2 to 4 months, the experimental group had access to the STAR training portal, a Web-based portal consisting of 8 modules, 2 of which had a basic level and 6 additional modules at intermediate and advanced levels. The experimental group also had access to online peer and expert communities for support and information exchange. The control group received free access to STAR after the research had ended. The STAR training portal was evaluated in a randomized controlled trial among informal caregivers and volunteers in addition to professional caregivers (N=142) in the Netherlands and the United Kingdom. Assessments were performed with self-assessed, online, standardized questionnaires at baseline and after 2 to 4 months. Primary outcome measures were user friendliness, usefulness, and impact of STAR on knowledge, attitudes, and approaches of caregivers regarding dementia

  12. Differences in Rate of Cognitive Decline and Caregiver Burden between Alzheimer’s Disease and Vascular Dementia: a Retrospective Study

    PubMed Central

    Pilon, Marie-Hélène; Poulin, Stéphane; Fortin, Marie-Pierre; Houde, Michèle; Verret, Louis; Bouchard, Rémi W.; Laforce, Robert

    2016-01-01

    Few studies have explored the rate of cognitive decline and caregiver burden within the context of a specialized memory clinic. When this was done, the focus was largely on functional decline related to Alzheimer’s disease (AD). Our goal was to compare the longitudinal decline of AD patients to those with Vascular Dementia (VaD) on Mini-Mental State Examination (MMSE). We further explored the differential impact on caregiver burden. We retrospectively studied 237 charts from patients seen at our Memory Clinic between 2006 and 2012. The data was collected over 17 years. Cohorts were formed by excluding conditions other than AD and VaD, and including patients who had been assessed at least twice with the MMSE (AD: n = 83; mean age: 67.7 yo; VaD: n = 32; mean age: 73.3yo). A small group of 36 caregivers was surveyed by phone to explore caregiver burden. Results indicated that the natural history of MMSE changes in AD patients differed significantly from that of patients with VaD (F = 10.41, p<0.0014), with AD patients showing more cognitive decline over time. Sadness, stress/anxiety, fatigue, and sleep disorders were reported as the main preoccupations by caregivers and its impact was rated as ‘severe’ in 50% of cases. Altogether, this study provides further insight into the natural history of cognitive decline in AD and VaD. Future studies should explore the progression of dementing disorders in larger cohorts using prospective methodological designs. PMID:27747317

  13. The quality of the caregiving relationship in informal care for older adults with dementia and chronic psychiatric patients.

    PubMed

    Spruytte, Nele; Van Audenhove, Chantal; Lammertyn, Frans; Storms, Gerrit

    2002-09-01

    The present study focuses on the dyadic relationship between a family carer and a patient. Besides clarifying the quality of the caregiving relationship in two populations of chronically ill patients, this investigation examines whether patient characteristics, carer characteristics and network characteristics are predictive of relationship quality in dementia caregiving. Partners, children or children-in-law caring for a relative suffering from dementia (N = 144) and partners or parents of persons suffering from chronic mental illness (N = 77) were interviewed with a semi-structured questionnaire. The measurement of relationship quality is based on the literature of Expressed Emotion and covers two dimensions: the level of criticism and the level of warmth. In general, the relationship between a carer and his or her chronically ill relative was marked by a low level of conflict or criticism and a high degree of warmth. The main predictors of a poorer relationship quality were disturbances in the patient's behaviour and the carer's perception of these disturbances. Our results suggest that, rather than limiting investigations to the burden experienced by the family carer, future research and interventions on chronically ill patients should focus on the quality of the carer-patient relationship and its determinants.

  14. Clinical Utility of Amyloid PET Imaging in the Differential Diagnosis of Atypical Dementias and Its Impact on Caregivers.

    PubMed

    Bensaïdane, Mohamed Reda; Beauregard, Jean-Mathieu; Poulin, Stéphane; Buteau, François-Alexandre; Guimond, Jean; Bergeron, David; Verret, Louis; Fortin, Marie-Pierre; Houde, Michèle; Bouchard, Rémi W; Soucy, Jean-Paul; Laforce, Robert

    2016-04-18

    Recent studies have supported a role for amyloid positron emission tomography (PET) imaging in distinguishing Alzheimer's disease (AD) pathology from other pathological protein accumulations leading to dementia. We investigated the clinical utility of amyloid PET in the differential diagnosis of atypical dementia cases and its impact on caregivers. Using the amyloid tracer 18F-NAV4694, we prospectively scanned 28 patients (mean age 59.3 y, s.d. 5.8; mean MMSE 21.4, s.d. 6.0) with an atypical dementia syndrome. Following a comprehensive diagnostic workup (i.e., history taking, neurological examination, blood tests, neuropsychological evaluation, MRI, and FDG-PET), no certain diagnosis could be arrived at. Amyloid PET was then conducted and classified as positive or negative. Attending physicians were asked to evaluate whether this result led to a change in diagnosis or altered management. They also reported their degree of confidence in the diagnosis. Caregivers were met after disclosure of amyloid PET results and completed a questionnaire/interview to assess the impact of the scan. Our cohort was evenly divided between positive (14/28) and negative (14/28) 18F-NAV4694 cases. Amyloid PET resulted in a diagnostic change in 9/28 cases (32.1%: 17.8% changed from AD to non-AD, 14.3% from non-AD to AD). There was a 44% increase in diagnostic confidence. Altered management occurred in 71.4% (20/28) of cases. Knowledge of amyloid status improved caregivers' outcomes in all domains (anxiety, depression, disease perception, future anticipation, and quality of life). This study suggests a useful additive role for amyloid PET in atypical cases with an unclear diagnosis beyond the extensive workup of a tertiary memory clinic. Amyloid PET increased diagnostic confidence and led to clinically significant alterations in management. The information gained from that test was well received by caregivers and encouraged spending quality time with their loved ones. PMID:27104896

  15. [Voluntary help in dementia - predictors for utilisation and expected quality from a family caregiver's point of view].

    PubMed

    Grässel, E; Luttenberger, K; Römer, H; Donath, C

    2010-09-01

    Although support services are considered cost-effective in the relief of care-giving family members of dementia patients, there has been little research to date on the predictors of use and quality expectations. These two questions are examined for the first time based on cross-sectional data of 404 care-giving family members, users and non-users of voluntary help services. Quantitative data are evaluated using binary logistical regression analysis, qualitative data using content analysis. The rating of how helpful the use of a voluntary help service is in the personal situation was found to be the only significant predictor of use. With respect to quality, it is most important that the persons giving support be punctual and well-trained. To increase the rate of use, care-giving family members must be convinced of the relevant benefits of using a voluntary help service. In addition, attention must be paid to the professional organization and training of voluntary helpers.

  16. Assessment of Depression in Dementia Patients: Association of Caregiver Mood with Depression Ratings.

    ERIC Educational Resources Information Center

    Teri, Linda; Truax, Paula

    1994-01-01

    Primary caregivers (n=41) of memory-impaired patients rated a standardized stimulus of depression and their actual patient. They were able to correctly identify depression in both. Further, their mood was unassociated with video ratings and only moderately associated with patient ratings. The findings support reliance on caregiver input.…

  17. Caregiving Hassles Scale: Assessing the Daily Hassles of Caring for a Family Member with Dementia.

    ERIC Educational Resources Information Center

    Kinney, Jennifer M.; Stephens, Mary Ann Parris

    1989-01-01

    Primary caregivers to Alzheimer disease patients (N=60) twice completed Caregiving Hassles Scale and reported on their well-being. Scale provided reliable and psychometrically sound instrument for assessing hassles associated with assistance in basic and instrumental activities of daily living, care-recipient cognitive status and behavior, and…

  18. Anger and Depression Management: Psychoeducational Skill Training Interventions for Women Caregivers of a Relative with Dementia

    ERIC Educational Resources Information Center

    Coon, David W.; Thompson, Larry; Steffen, Ann; Sorocco, Kristen; Gallagher-Thompson, Dolores

    2003-01-01

    Purpose: This study examines the short-term impact of two theoretically based psychoeducational small group interventions with distressed caregivers, and it also examines the role of specific moderator and mediator variables on caregiver outcomes. Design and Methods: Female participants (N = 169) aged 50 and older who were caring for a…

  19. Preliminary Data from the Caring for Older Adults and Caregivers at Home (COACH) Program: A Care Coordination Program for Home-Based Dementia Care and Caregiver Support in a Veterans Affairs Medical Center.

    PubMed

    D'Souza, Maria F; Davagnino, Judith; Hastings, S Nicole; Sloane, Richard; Kamholz, Barbara; Twersky, Jack

    2015-06-01

    Caring for Older Adults and Caregivers at Home (COACH) is an innovative care coordination program of the Durham Veteran's Affairs Medical Center in Durham, North Carolina, that provides home-based dementia care and caregiver support for individuals with dementia and their family caregivers, including attention to behavioral symptoms, functional impairment, and home safety, on a consultation basis. The objectives of this study were to describe the COACH program in its first 2 years of operation, assess alignment of program components with quality measures, report characteristics of program participants, and compare rates of placement outside the home with those of a nontreatment comparison group using a retrospective cohort design. Participants were community-dwelling individuals with dementia aged 65 and older who received primary care in the medical center's outpatient clinics and their family caregivers, who were enrolled as dyads (n = 133), and a control group of dyads who were referred to the program and met clinical eligibility criteria but did not enroll (n = 29). Measures included alignment with Dementia Management Quality Measures and time to placement outside the home during 12 months of follow-up after referral to COACH. Results of the evaluation demonstrated that COACH aligns with nine of 10 clinical process measures identified using quality measures and that COACH delivers several other valuable services to enhance care. Mean time to placement outside the home was 29.6 ± 14.3 weeks for both groups (P = .99). The present study demonstrates the successful implementation of a home-based care coordination intervention for persons with dementia and their family caregivers that is strongly aligned with quality measures. PMID:26032224

  20. Preliminary Data from the Caring for Older Adults and Caregivers at Home (COACH) Program: A Care Coordination Program for Home-Based Dementia Care and Caregiver Support in a Veterans Affairs Medical Center.

    PubMed

    D'Souza, Maria F; Davagnino, Judith; Hastings, S Nicole; Sloane, Richard; Kamholz, Barbara; Twersky, Jack

    2015-06-01

    Caring for Older Adults and Caregivers at Home (COACH) is an innovative care coordination program of the Durham Veteran's Affairs Medical Center in Durham, North Carolina, that provides home-based dementia care and caregiver support for individuals with dementia and their family caregivers, including attention to behavioral symptoms, functional impairment, and home safety, on a consultation basis. The objectives of this study were to describe the COACH program in its first 2 years of operation, assess alignment of program components with quality measures, report characteristics of program participants, and compare rates of placement outside the home with those of a nontreatment comparison group using a retrospective cohort design. Participants were community-dwelling individuals with dementia aged 65 and older who received primary care in the medical center's outpatient clinics and their family caregivers, who were enrolled as dyads (n = 133), and a control group of dyads who were referred to the program and met clinical eligibility criteria but did not enroll (n = 29). Measures included alignment with Dementia Management Quality Measures and time to placement outside the home during 12 months of follow-up after referral to COACH. Results of the evaluation demonstrated that COACH aligns with nine of 10 clinical process measures identified using quality measures and that COACH delivers several other valuable services to enhance care. Mean time to placement outside the home was 29.6 ± 14.3 weeks for both groups (P = .99). The present study demonstrates the successful implementation of a home-based care coordination intervention for persons with dementia and their family caregivers that is strongly aligned with quality measures.

  1. Dementia

    MedlinePlus

    ... Dementia may also cause changes in mood and personality. Early on, lapses in memory and clear thinking ... to tears to anger in a few minutes. Personality changes. People who have dementia may have drastic ...

  2. Partial mediation role of self-efficacy between positive social interaction and mental health in family caregivers for dementia patients in Shanghai.

    PubMed

    Zhang, Shuying; Edwards, Helen; Yates, Patsy; Guo, Qihao; Li, Chunbo

    2013-01-01

    We explored the mediation effect of caregiver self-efficacy on the influences of behavioral and psychological symptoms (BPSD) of dementia care recipients (CRs) or family caregivers' (CGs) social supports (informational, tangible and affectionate support and positive social interaction) on CGs' mental health. We interviewed 196 CGs, using a battery of measures including demographic data of the dyads, CRs' dementia-related impairments, and CGs' social support, self-efficacy and the Medical Outcome Study (MOS) Short-Form (SF-36) Health Survey. Multiple regression analyses showed that gathering information on self-efficacy and managing CG distress self-efficacy were the partial mediators of the relationship between positive social interaction and CG mental health. Managing caregiving distress self-efficacy also partial mediated the impact of BPSD on CG mental health. We discuss implications of the results for improving mental health of the target population in mainland China. PMID:24386178

  3. Results and Lessons Learned from a Nurse Practitioner-Guided Dementia Care Intervention for Primary Care Patients and Their Family Caregivers

    PubMed Central

    Fortinsky, Richard H.; Delaney, Colleen; Harel, Ofer; Pasquale, Karen; Schjavland, Elena; Lynch, John; Kleppinger, Alison; Crumb, Suzanne

    2014-01-01

    Older adults with dementia care needs often visit primary care physicians (PCPs), but PCP dementia care limitations are widely documented. This study tested the value of employing a nurse practitioner (NP) with geropsychiatric expertise to augment PCP care for newly and recently diagnosed patients and family caregivers. Twenty-one dyads received the NP intervention; 10 dyads were controls. Outcomes included patient neuropsychiatric symptom and quality of life changes, and caregiver depression, burden, and self-efficacy changes. Intervention acceptability by patients, caregivers, and PCPs was determined. No outcome differences were found; however, the NP intervention was deemed highly satisfactory by all stakeholders. Patients experienced no significant cognitive decline during their 12-month study period, helping explain why outcomes did not change. Given widespread acceptability, future tests of this PCP-enhancing intervention should include patients with more progressive cognitive decline at study entry. NPs with geropsychiatric expertise are ideal interventionists for this rapidly growing target population. PMID:24444453

  4. [Blogging is an effective way to reduce a stress for caregivers who are involved in caring dementia patients at home--the result from the questionnaire survey].

    PubMed

    Hori, Miyako; Kubota, Masakazu; Kinoshita, Ayae

    2010-12-01

    We sent out questionnaires to examine how caregivers, who are involved in caring home dementia patients, effectively reduce their stresses by blogging. A total of 39 caregivers(13 males and 26 females)filled out a questionnaire(write-in free descriptive type)by E-mail. What was it that you gained from blogging to reduce a stress from the work ? The responses to that question were: (1) social support, (2) coping with stress, and (3) perception of the event. These answers appeared to be agreed with the crisis theory of Aguilera. In the situation where a lot of stresses were involved, it was clear that blogging was an effective way to reduce a stress for caregivers who were involved in caring dementia patients at home.

  5. Reducing neuropsychiatric symptoms in persons with dementia and associated burden in family caregivers using tailored activities: Design and methods of a randomized clinical trial.

    PubMed

    Gitlin, Laura N; Piersol, Catherine Verrier; Hodgson, Nancy; Marx, Katherine; Roth, David L; Johnston, Deidre; Samus, Quincy; Pizzi, Laura; Jutkowitz, Eric; Lyketsos, Constantine G

    2016-07-01

    Among over 5million people in the USA with dementia, neuropsychiatric symptoms (NPS) are almost universal, occurring across disease etiology and stage. If untreated, NPS can lead to significant morbidity and mortality including increased cost, distress, depression, and faster disease progression, as well as heightened burden on families. With few pharmacological solutions, identifying nonpharmacologic strategies is critical. We describe a randomized clinical trial, the Dementia Behavior Study, to test the efficacy of an activity program to reduce significant existing NPS and associated caregiver burden at 3 and 6months compared to a control group intervention. Occupational therapists deliver 8 in-home sessions over 3months to assess capabilities and interests of persons with dementia, home environments, and caregiver knowledge, and readiness from which activities are developed and families trained in their use. Families learn to modify activities for future declines and use strategies to address care challenges. The comparison group controls for time and attention and involves 8 in-home sessions delivered by health educators who provide dementia education, home safety recommendations, and advanced care planning. We are randomizing 250 racially diverse families (person with dementia and primary caregiver dyads) recruited from community-based social services, conferences and media announcements. The primary outcome is change in agitation/aggression at 3 and 6months. Secondary outcomes assess quality of life of persons with dementia, other behaviors, burden and confidence of caregivers, and cost and cost effectiveness. If benefits are supported, this activity intervention will provide a clinically meaningful approach to prevent, reduce, and manage NPS.

  6. Reducing neuropsychiatric symptoms in persons with dementia and associated burden in family caregivers using tailored activities: Design and methods of a randomized clinical trial.

    PubMed

    Gitlin, Laura N; Piersol, Catherine Verrier; Hodgson, Nancy; Marx, Katherine; Roth, David L; Johnston, Deidre; Samus, Quincy; Pizzi, Laura; Jutkowitz, Eric; Lyketsos, Constantine G

    2016-07-01

    Among over 5million people in the USA with dementia, neuropsychiatric symptoms (NPS) are almost universal, occurring across disease etiology and stage. If untreated, NPS can lead to significant morbidity and mortality including increased cost, distress, depression, and faster disease progression, as well as heightened burden on families. With few pharmacological solutions, identifying nonpharmacologic strategies is critical. We describe a randomized clinical trial, the Dementia Behavior Study, to test the efficacy of an activity program to reduce significant existing NPS and associated caregiver burden at 3 and 6months compared to a control group intervention. Occupational therapists deliver 8 in-home sessions over 3months to assess capabilities and interests of persons with dementia, home environments, and caregiver knowledge, and readiness from which activities are developed and families trained in their use. Families learn to modify activities for future declines and use strategies to address care challenges. The comparison group controls for time and attention and involves 8 in-home sessions delivered by health educators who provide dementia education, home safety recommendations, and advanced care planning. We are randomizing 250 racially diverse families (person with dementia and primary caregiver dyads) recruited from community-based social services, conferences and media announcements. The primary outcome is change in agitation/aggression at 3 and 6months. Secondary outcomes assess quality of life of persons with dementia, other behaviors, burden and confidence of caregivers, and cost and cost effectiveness. If benefits are supported, this activity intervention will provide a clinically meaningful approach to prevent, reduce, and manage NPS. PMID:27339865

  7. Dementia.

    PubMed

    Ljubenkov, Peter A; Geschwind, Michael D

    2016-08-01

    Dementia often is defined as a progressive cognitive disturbance leading to a loss of independent function. Most clinicians are familiar with the typical pattern of amnestic Alzheimer's disease, the most common neurodegenerative presentation of dementia. Atypical dementia presentations, including atypical Alzheimer's variants, however, may pose a diagnostic challenge for even experienced clinicians. In this article the authors discuss clinical "pearls" for the diagnosis of various neurodegenerative dementia syndromes. When considering the causes of dementia, the mnemonic VITAMINS can be helpful in considering various etiologies. PMID:27643909

  8. Dementias.

    PubMed

    Sacuiu, S F

    2016-01-01

    This chapter will focus on the descriptive, analytic, and intervention-oriented epidemiology of dementia and its most frequent etiologic type due to Alzheimer's disease. The chapter opens with a brief presentation of the concept of dementia, followed by the presentation of dementia of the Alzheimer type (DAT), including natural history, clinical manifestation, neuropathology, medical prognosis, and management. Further, the chapter presents the prevalence and incidence of dementia, with special consideration of secular trends in prevalence and incidence of DAT, and prognosis of the socioeconomic impact of dementia. Thereafter the main risk factors for DAT are covered. The chapter also addresses the results of ongoing therapeutic and preventive intervention trials for DAT. Finally, the future challenges of the epidemiology of dementia with a focus on the impact of the new diagnostic criteria for neurocognitive disorders, as well as the development of biomarkers for DAT and other types of dementia, will be briefly discussed. PMID:27637956

  9. Explaining the use and non-use of community-based long-term care services by caregivers of persons with dementia.

    PubMed

    Markle-Reid, M; Browne, G

    2001-08-01

    The purpose of this paper is to synthesize and critically evaluate the current literature that explains the use and non-use of formal community-based long-term care services by caregivers of persons with dementia. There are four issues related to formal community service use by caregivers: reluctance to initiate formal services; under-utilization of available services; delayed utilization of services; and inappropriate utilization of services. Despite substantial research efforts to understand these issues, the reasons for low rates of community service use by this population remains unclear. Common methodological problems and limitations in the underlying theoretical assumptions in the literature, as they relate to caregivers of persons with dementia, have limited the usefulness of the current research for informing practice and policy. A conflict-theory model of decision-making is proposed as an alternative theoretical framework for understanding the particularity and complexity of the decision-making process leading up to the initiation of formal service use. Utilization of formal services is a result of a complex and subjective decision-making process that is unrelated to objective circumstances. The proposed conflict theory model of decision-making can inform policy and practice regarding the development of appropriate, timely and individualized interventions to facilitate the use of formal services by caregivers of persons with dementia. PMID:11555086

  10. A randomized clinical trial of Behavioral Activation (BA) therapy for improving psychological and physical health in dementia caregivers: results of the Pleasant Events Program (PEP).

    PubMed

    Moore, Raeanne C; Chattillion, Elizabeth A; Ceglowski, Jennifer; Ho, Jennifer; von Känel, Roland; Mills, Paul J; Ziegler, Michael G; Patterson, Thomas L; Grant, Igor; Mausbach, Brent T

    2013-10-01

    Dementia caregiving is associated with elevations in depressive symptoms and increased risk for cardiovascular diseases (CVD). This study evaluated the efficacy of the Pleasant Events Program (PEP), a 6-week Behavioral Activation intervention designed to reduce CVD risk and depressive symptoms in caregivers. One hundred dementia family caregivers were randomized to either the 6-week PEP intervention (N = 49) or a time-equivalent Information-Support (IS) control condition (N = 51). Assessments were completed pre- and post-intervention and at 1-year follow-up. Biological assessments included CVD risk markers Interleukin-6 (IL-6) and D-dimer. Psychosocial outcomes included depressive symptoms, positive affect, and negative affect. Participants receiving the PEP intervention had significantly greater reductions in IL-6 (p = .040), depressive symptoms (p = .039), and negative affect (p = .021) from pre- to post-treatment. For IL-6, clinically significant improvement was observed in 20.0% of PEP participants and 6.5% of IS participants. For depressive symptoms, clinically significant improvement was found for 32.7% of PEP vs 11.8% of IS participants. Group differences in change from baseline to 1-year follow-up were non-significant for all outcomes. The PEP program decreased depression and improved a measure of physiological health in older dementia caregivers. Future research should examine the efficacy of PEP for improving other CVD biomarkers and seek to sustain the intervention's effects. PMID:23916631

  11. Systematic review of information and support interventions for caregivers of people with dementia

    PubMed Central

    Thompson, Carl A; Spilsbury, Karen; Hall, Jill; Birks, Yvonne; Barnes, Colin; Adamson, Joy

    2007-01-01

    Background Dementia is an important health and social care problem and is one of the main causes of disability in later life. The number of families affected by dementia will dramatically increase over the next five decades. Despite the implications for health and social care services in the future, the overwhelming majority of care for people with dementia takes place away from health care settings. Providing informal care for someone with dementia can be psychologically, physically and financially expensive and a range of health service interventions aimed at supporting and providing information to these carers has developed to help carers meet these demands. This review examines whether information and support interventions improve the quality of life of people caring for someone with dementia. Methods A systematic review examining evidence from randomised controlled trials in which technology, individualised or group-based interventions built around the provision of support and/or information were evaluated. Results Forty-four studies were included in the review. Controlling for the quality of the evidence, we found statistically significant evidence that group-based supportive interventions impact positively on psychological morbidity. However, whilst the improvement was unlikely to be due to chance, the clinical significance of this finding should be interpreted tentatively, due to the difficulties in interpreting the standardised mean difference as a measure of effect and the complex aetiology of depression. No evidence was found for the effectiveness of any other form of intervention on a range of physical and psychological health outcomes. Conclusion There is little evidence that interventions aimed at supporting and/or providing information to carers of people with dementia are uniformly effective. There is a pressing need to ensure that supportive interventions at the development stage are accompanied by good quality randomised evaluations in which

  12. Dementia

    PubMed Central

    McGuinness, B; Herron, B; Passmore, AP

    2015-01-01

    Dementia is a clinical diagnosis requiring new functional dependence on the basis of progressive cognitive decline. It is estimated that 1.3% of the entire UK population, or 7.1% of those aged 65 or over, have dementia. Applying these to 2013 population estimates gives an estimated number of 19,765 people living with dementia in Northern Ireland. The clinical syndrome of dementia can be due to a variety of underlying pathophysiological processes. The most common of these is Alzheimer's disease (50-75%) followed by vascular dementia (20%), dementia with Lewy bodies (5%) and frontotemporal lobar dementia (5%). The clinical symptoms and pathophysiological processes of these diseases overlap significantly. Biomarkers to aid diagnosis and prognosis are emerging. Acetylcholinesterase inhibitors and memantine are the only medications currently licensed for the treatment of dementia. The nature of symptoms mean people with dementia are more dependent and vulnerable, both socially and in terms of physical and mental health, presenting evolving challenges to society and to our healthcare systems. PMID:26170481

  13. The cost-effectiveness of a family meetings intervention to prevent depression and anxiety in family caregivers of patients with dementia: a randomized trial

    PubMed Central

    2013-01-01

    Background Dementia imposes a heavy burden on health and social care systems as well as on family caregivers who provide a substantial portion of the care. Interventions that effectively support caregivers may prevent or delay patient institutionalization and hence be cost-effective. However, evidence about the cost-effectiveness of such interventions is scarce. The aim of this study was to evaluate the cost-effectiveness of a family meetings intervention for family caregivers of dementia patients in comparison with usual care over a period of 12 months. Methods The economic evaluation was conducted from a societal perspective alongside a randomized trial of 192 primary caregivers with community-dwelling dementia patients. Outcome measures included the Quality Adjusted Life-Years (QALY) of caregivers and patients and the incidence of depression and anxiety disorders in caregivers. Missing cost and effect data were imputed using multiple imputations. Bootstrapping was used to estimate uncertainty around the cost-differences and the incremental cost-effectiveness ratio (ICER). The bootstrapped cost-effect pairs were plotted on a cost-effectiveness plane and used to estimate cost-effectiveness curves. Results No significant differences in costs and effects between the groups were found. At 12 months, total costs per patient and primary caregiver dyad were substantial: €77,832 for the intervention group and €75,201 for the usual care group (adjusted mean difference per dyad €4,149, 95% CI -13,371 to 21,956, ICER 157,534). The main cost driver was informal care (66% of total costs), followed by patients’ day treatment and costs of hospital and long-term care facility admissions (23%). Based on the cost-effectiveness acceptability curves, the maximum probability that the intervention was considered cost-effective in comparison with usual care reached 0.4 for the outcome QALY per patient-caregiver dyad and 0.6 for the caregivers’ incidence of depression and

  14. Development and Psychometric Testing of the Caregiver Communication Competence Scale in Patients With Dementia.

    PubMed

    Chao, Hui-Chen; Yang, Ya-Ping; Huang, Mei-Chih; Wang, Jing-Jy

    2016-01-01

    Appropriate communication skills are essential for understanding patient needs, particularly those of patients with dementia. Assessing health care providers' competence in communicating with patients with dementia is critical for planning a communication education program. However, no formally established scale can be used. The purpose of the current study was to develop a valid and reliable instrument for determining the communication competence of health care providers with patients with dementia. Through use of a literature review and previous clinical experience, an initial 28-item scale was developed to assess the frequency of use of each item by health care providers. Fourteen items were extracted and three factors were distinguished. Results indicated that the internal consistency reliability of the 14-item scale was 0.84. Favorable convergent and discriminant validities were reached. The communication competence scale provides administrators or educators with a useful tool for assessing communication competence of health care providers when interacting with patients with dementia so a suitable education program can be planned and implemented.

  15. Working with families of hospitalized older adults with dementia: caregivers are useful resources and should be part of the care team.

    PubMed

    Bradway, Christine; Hirschman, Karen B

    2008-10-01

    Families provide a considerable amount of informal care and support for older adults living with dementia. And when an older adult with dementia is hospitalized, family caregivers should be seen as important sources of information and included as valuable members of the health care team. This article describes a best-practice approach to working with families and includes recommendations for using the Information for the Hospital Team About a Patient with Memory Problems form. For a free online video demonstrating the use of this form, go to http://links.lww.com/A301.

  16. Dementia

    MedlinePlus

    ... agitated or see things that are not there. Memory loss is a common symptom of dementia. However, memory loss by itself does not mean you have ... with two or more brain functions, such as memory and language. Although dementia is common in very ...

  17. The Cost-Effectiveness of Two Forms of Case Management Compared to a Control Group for Persons with Dementia and Their Informal Caregivers from a Societal Perspective

    PubMed Central

    Eekhout, Iris; Joling, Karlijn J.; van Mierlo, Lisa D.; Meiland, Franka J. M.; van Hout, Hein P. J.; de Rooij, Sophia E.

    2016-01-01

    Objectives The objective of this article was to compare the costs and cost-effectiveness of the two most prominent types of case management in the Netherlands (intensive case management and linkage models) against no access to case management (control group) for people with already diagnosed dementia and their informal caregivers. Methods The economic evaluation was conducted from a societal perspective embedded within a two year prospective, observational, controlled, cohort study with 521 informal caregivers and community-dwelling persons with dementia. Case management provided within one care organization (intensive case management model, ICMM), case management where care was provided by different care organizations within one region (Linkage model, LM), and a group with no access to case management (control) were compared. The economic evaluation related incremental costs to incremental effects regarding neuropsychiatric symptoms (NPI), psychological health of the informal caregiver (GHQ-12), and quality adjusted life years (QALY) of the person with dementia and informal caregiver. Results Inverse-propensity-score-weighted models showed no significant differences in clinical or total cost outcomes between the three groups. Informal care costs were significantly lower in the ICMM group compared to both other groups. Day center costs were significantly lower in the ICMM group compared to the control group. For all outcomes, the probability that the ICMM was cost-effective in comparison with LM and the control group was larger than 0.97 at a threshold ratio of 0 €/incremental unit of effect. Conclusion This study provides preliminary evidence that the ICMM is cost-effective compared to the control group and the LM. However, the findings should be interpreted with caution since this study was not a randomized controlled trial. PMID:27655234

  18. Dementia

    PubMed Central

    2010-01-01

    Introduction Dementia is characterised by chronic, global, non-reversible deterioration in memory, executive function, and personality. Speech and motor function may also be impaired. Methods and outcomes We conducted a systematic review and aimed to answer the following clinical question: What are the effects of treatments on cognitive symptoms of dementia (Alzheimer's, Lewy body, or vascular)? What are the effects of treatments on behavioural and psychological symptoms of dementia (Alzheimer's, Lewy body, or vascular)? We searched: Medline, Embase, The Cochrane Library, and other important databases up to April 2008 (Clinical Evidence reviews are updated periodically; please check our website for the most up-to-date version of this review). We included harms alerts from relevant organisations such as the US Food and Drug Administration (FDA) and the UK Medicines and Healthcare products Regulatory Agency (MHRA). Results We found 33 systematic reviews, RCTs, or observational studies that met our inclusion criteria. We performed a GRADE evaluation of the quality of evidence for interventions. Conclusions In this systematic review, we present information relating to the effectiveness and safety of the following interventions: acetylcholinesterase inhibitors (donepezil, galantamine, rivastigmine), antidepressants (clomipramine, fluoxetine, imipramine, sertraline), antipsychotics (haloperidol, olanzapine, quetiapine, risperidone), aromatherapy, benzodiazepines (diazepam, lorazepam), cognitive behavioural therapy (CBT), cognitive stimulation, exercise, ginkgo biloba, memantine, mood stabilisers (carbamazepine, sodium valproate/valproic acid), music therapy, non-steroidal anti-inflammatory drugs (NSAIDs), omega 3 (fish oil), reminiscence therapy, and statins. PMID:21726471

  19. Dementia

    PubMed Central

    2012-01-01

    Introduction Dementia is characterised by chronic, global, non-reversible deterioration in memory, executive function, and personality. Speech and motor function may also be impaired. Methods and outcomes We conducted a systematic review and aimed to answer the following clinical questions: What are the effects of treatments on cognitive symptoms of dementia (Alzheimer's, Lewy body, or vascular)? What are the effects of treatments on behavioural and psychological symptoms of dementia (Alzheimer's, Lewy body, or vascular)? We searched: Medline, Embase, The Cochrane Library, and other important databases up to July 2011 (Clinical Evidence reviews are updated periodically; please check our website for the most up-to-date version of this review). We included harms alerts from relevant organisations such as the US Food and Drug Administration (FDA) and the UK Medicines and Healthcare products Regulatory Agency (MHRA). Results We found 49 systematic reviews, RCTs, or observational studies that met our inclusion criteria. We performed a GRADE evaluation of the quality of evidence for interventions. Conclusions In this systematic review, we present information relating to the effectiveness and safety of the following interventions: acetylcholinesterase inhibitors (donepezil, galantamine, rivastigmine), antidepressants (clomipramine, fluoxetine, imipramine, sertraline), antipsychotics (haloperidol, olanzapine, quetiapine, risperidone), aromatherapy, benzodiazepines (diazepam, lorazepam), cognitive behavioural therapy (CBT), cognitive stimulation, exercise, ginkgo biloba, memantine, mood stabilisers (carbamazepine, sodium valproate/valproic acid), music therapy, non-steroidal anti-inflammatory drugs (NSAIDs), omega 3 (fish oil), reminiscence therapy, and statins. PMID:23870856

  20. Predictors of perceived benefits and drawbacks of using paid service among daughter and daughter-in-law caregivers of people with dementia.

    PubMed

    Moon, Heehyul

    2016-01-01

    This study examines the types of benefits and drawbacks of a sample of daughter and daughter-in-law caregivers (CG) of people with dementia and explores the predictors associated with the identified benefits and drawbacks. The current study used a secondary analysis of a purposive sample of 102 daughters or daughters-in-law living in Northeast Ohio who were required to be using at least 8 hours of paid services per week to help in caring for their care recipient (CR) with Alzheimer's disease or other memory problems. Logistic regression was used. All respondents answered that there were benefits of having the paid help, but 51% of them reported drawbacks as well. The analyses revealed that predictors of each identified benefit and drawback were different. Information about benefits and drawbacks of paid help is useful for service providers to design better services for CGs of people with dementia.

  1. Family Caregivers.

    ERIC Educational Resources Information Center

    Frazier, Billie H.

    This document contains a brief bibliography of peer-reviewed literature, with abstracts, on family caregiving. It is one of 12 bibliographies on aging prepared by the National Agricultural Library for its "Pathfinders" series of publications. Topics covered by the other 11 bibliographies include aging parents, adult children, dementia and…

  2. Role of Advance Care Planning in Proxy Decision Making Among Individuals With Dementia and Their Family Caregivers.

    PubMed

    Kwak, Jung; De Larwelle, Jessica A; Valuch, Katharine O'Connell; Kesler, Toni

    2016-01-01

    Health care proxies make important end-of-life decisions for individuals with dementia. A cross-sectional survey was conducted to examine the role of advance care planning in proxy decision making for 141 individuals with cognitive impairment, Alzheimer's disease, or other types of dementia. Proxies who did not know the preferences of individuals with dementia for life support treatments reported greater understanding of their values. Proxies of individuals with dementia who did not want life support treatments anticipated receiving less support and were more uncertain in decision making. The greater knowledge proxies had about dementia trajectory, family support, and trust of physicians, the more informed, clearer, and less uncertain they were in decision making. In addition to advance care planning, multiple factors influence proxy decision making, which should be considered in developing interventions and future research to support informed decision making for individuals with dementia and their families.

  3. Recruiting Community-Based Dementia Patients and Caregivers in a Nonpharmacologic Randomized Trial: What Works and How Much Does It Cost?

    PubMed Central

    Morrison, Karen; Winter, Laraine; Gitlin, Laura N.

    2015-01-01

    Objectives The aim of this study was to evaluate the yield and cost of three recruitment strategies—direct mail, newspaper advertisements, and community outreach—for identifying and enrolling dementia caregivers into a randomized trial testing a nonpharmacologic approach to enhancing quality of life of patients and caregivers (dyads). Method Enrollment occurred between 2006 and 2008. The number of recruitment inquiries, number and race of enrollees, and costs for each recruitment strategy were recorded. Results Of 284 inquiries, 237 (83%) dyads enrolled. Total cost for recruitment across methodologies was US$154 per dyad. Direct mailings resulted in the most enrollees (n = 135, 57%) and was the least costly method (US$63 per dyad) compared with newspaper ads (US$224 per dyad) and community outreach (US$350 per dyad). Although enrollees were predominately White, mailings yielded the highest number of non-Whites (n = 37). Discussion Direct mailings was the most effective and least costly method for enrolling dyads in a nonpharmacologic dementia trial. PMID:24799354

  4. Measuring the Caregiver Burden of Caring for Community-Residing People with Alzheimer’s Disease

    PubMed Central

    Yu, Hongmei; Wang, Xiaocheng; He, Runlian; Liang, Ruifeng; Zhou, Liye

    2015-01-01

    Objectives To assess the direct and indirect effects of patient or caregiver factors on caregiver burden of caring for community-residing people with mild Alzheimer’s disease (AD). Methods We conducted a cross-sectional study of patients diagnosed with AD from two hospitals and three communities in Taiyuan, China and their caregivers. For this survey, 200 patients with mild AD and their caregivers were selected. Caregivers were asked to provide sociodemographic information including age, gender, relationship with the patient, level of education, and number of contact hours per week with the patient. Caregiver burden was assessed using the Caregivers Burden Inventory. The caregivers also completed other measures including the Positive Aspects of Caregiving, the Family Adaptation, Partnership, Growth, Affection, and Resolve, and the Social Support Rating Scale. The patients with AD completed the Montreal Cognitive Assessment; their caregivers completed the Activities of Daily Living Scale and a questionnaire about the patients’ Behavioral and Psychological symptoms of Dementia. The main outcome in this study was caregiver burden. The care receivers’ level of cognitive function, physical function, and behavioral problems were treated as original stress; the primary appraisal variable was measured as the number of hours of caregiving in the previous week reported by the caregiver. Mediator variables included perceived social support, family function, and caregiving experience. Path analysis was used to build the interrelationship among caregiver burden and patient or caregiver factors. Results A lower level of cognitive function in patients (r = −0.28, p<0.001) and longer hours of caregiving (r = 0.17, p = 0.019) were related to increased caregiver burden. Greater social support (r = −0.23, p<0.001), family function (r = −0.17, p = 0.015) and caregiving experience (r = −0.16, p = 0.012) were related to decreased caregiver burden. Social support (r = 0

  5. Neuropsychiatric Symptoms in Latino Elders with Dementia or Cognitive Impairment without Dementia and Factors that Modify Their Association with Caregiver Depression

    ERIC Educational Resources Information Center

    Hinton, Ladson; Haan, Mary; Geller, Sue; Mungas, Dan

    2003-01-01

    Purpose: The purpose of this study was to determine neuropsychiatric symptom frequency and intensity in demented and cognitively impaired but not demented Latino elderly persons, evaluate whether overall neuropsychiatric symptom intensity is associated with higher levels of caregiver depression, and identify factors that modify the relationship…

  6. Spousal Caregiver Narratives and Credible Authority: Uncertainty in Illness of Spousal Caregivers

    ERIC Educational Resources Information Center

    Sodowsky, Karen

    2012-01-01

    This article is taken from a larger longitudinal study that used caregiver interviews, caregiver surveys, and caregiver statistical information of one community. The interviews were conducted with six spousal caregivers to examine the narratives produced by spouses actively caring for their partners with dementia. The spousal caregivers were…

  7. Development and testing of the Dementia Symptom Management at Home (DSM-H) program: An interprofessional home health care intervention to improve the quality of life for persons with dementia and their caregivers.

    PubMed

    Brody, Abraham A; Guan, Carrie; Cortes, Tara; Galvin, James E

    2016-01-01

    Home health care agencies are increasingly taking care of sicker, older patients with greater comorbidities. However, they are unequipped to appropriately manage these older adults, particular persons living with dementia (PLWD). We therefore developed the Dementia Symptom Management at Home (DSM-H) Program, a bundled interprofessional intervention, to improve the care confidence of providers, and quality of care delivered to PLWD and their caregivers. We implemented the DSM-H with 83 registered nurses, physical therapists, and occupational therapists. Overall, there was significant improvement in pain knowledge (5.9%) and confidence (26.5%), depression knowledge (14.8%) and confidence (36.1%), and neuropsychiatric symptom general knowledge (16.8%), intervention knowledge (20.9%), attitudes (3.4%) and confidence (27.1%) at a statistical significance of (P < .0001). We also found significant differences between disciplines. Overall, this disseminable program proved to be implementable and improve clinician's knowledge and confidence in caring for PLWD, with the potential to improve quality of care and quality of life, and decrease costs. PMID:26922312

  8. Social Network Data Validity: The Example of the Social Network of Caregivers of Older Persons with Alzheimer-Type Dementia

    ERIC Educational Resources Information Center

    Carpentier, Normand

    2007-01-01

    This article offers reflection on the validity of relational data such as used in social network analysis. Ongoing research on the transformation of the support network of caregivers of persons with an Alzheimer-type disease provides the data to fuel the debate on the validity of participant report. More specifically, we sought to understand the…

  9. Confirmatory Factor Analysis of a Brief Version of the Zarit Burden Interview in Black and White Dementia Caregivers

    ERIC Educational Resources Information Center

    Flynn Longmire, Crystal V.; Knight, Bob G.

    2011-01-01

    Purpose of the study: Although the Zarit Burden Interview (ZBI) is one of the most extensively used measures in research for caregiver burden, few researchers have examined its factor structure. Furthermore, though the ZBI has also been used in cross-group comparisons of burden, there have not been studies of whether or not it measures burden…

  10. Impact of TimeSlips, a Creative Expression Intervention Program, on Nursing Home Residents with Dementia and their Caregivers

    ERIC Educational Resources Information Center

    Fritsch, Thomas; Kwak, Jung; Grant, Stacey; Lang, Josh; Montgomery, Rhonda R.; Basting, Anne D.

    2009-01-01

    Purpose: Creative expression (CE) programs are emerging interventions to improve the quality of care and life of persons with dementia (PWDs) in long-term care settings. However, limited empirical evidence exists to support the effectiveness of these programs. Here, we report the findings from an assessment of the impact of TimeSlips (TS), a group…

  11. Social Network Data Validity: The Example of the Social Network of Caregivers of Older Persons with Alzheimer-Type Dementia*

    PubMed Central

    Carpentier, Normand; Ducharme, Francine

    2010-01-01

    This article offers reflection on the validity of relational data such as used in social network analysis. Ongoing research on the transformation of the support network of caregivers of persons with an Alzheimer-type disease provides the data to fuel the debate on the validity of participant report. More specifically, we sought to understand the factors that might influence the description of the support network by persons involved in caregiving. The issue warrants special attention, given that social relations – in their form and their content – constitute the raw material of network analysis. We propose that how persons describe their social network corresponds to a subjective process that rests, in part, on their representation of their cultural and social universe. PMID:20737030

  12. Targeting and Managing Behavioral Symptoms in Individuals with Dementia: A Randomized Trial of a Nonpharmacologic Intervention

    PubMed Central

    Gitlin, Laura N.; Winter, Laraine; Dennis, Marie P.; Hodgson, Nancy; Hauck, Walter W.

    2010-01-01

    Objectives Test effects of an intervention that helps families manage distressful behaviors. Design Two-group randomized trial Setting In-home Participants 272 caregivers and dementia patients Intervention Up to 11 home/telephone contacts over 16-weeks by health professionals who identified potential triggers of patient behaviors including communication, environment, patient undiagnosed medical conditions (by obtaining blood/urine samples), and trained caregivers in strategies to modify triggers and reduce caregiver upset. Between 16–24 weeks, 3 telephone contacts reinforced strategy use. Measurements Primary outcomes included frequency of targeted problem behavior, and caregiver upset with and confidence managing it at 16-weeks. Secondary outcomes included caregiver well-being and management skills at 16 and 24 weeks, and caregiver perceived benefits. Prevalence of medical conditions for intervention patients were also examined. Results At 16 weeks, 67.5% of intervention caregivers reported patient improvement in targeted problem behavior compared to 45.8% of caregivers in a no-treatment control group (p=.002), reduced upset with (p=.028) and enhanced confidence managing (p=.011) the behavior. Additionally, compared to controls, intervention caregivers reported less upset with all problem behaviors (p=.001), negative communication (p=.017), burden (p=.051), and improved well-being (p=.001). Fewer intervention caregivers had depressive symptoms (53.0%) than control group caregivers (67.8%, p=.020). Similar caregiver outcomes occurred at 24-weeks. Compared to controls, intervention caregivers perceived more study benefits (p values <.05) including ability to keep patients home. Blood/urine samples of intervention patients showed 40 (34.1%) had undiagnosed illnesses requiring physician follow-up. Conclusion Targeting behaviors upsetting to caregivers and modifying potential triggers improves patient symptomatology and caregiver well-being and skills. PMID:20662955

  13. Does an Interdisciplinary Network Improve Dementia Care? Results from the IDemUck-Study

    PubMed Central

    Köhler, Leonore; Meinke-Franze, Claudia; Hein, Jürgen; Fendrich, Konstanze; Heymann, Romy; Thyrian, Jochen René; Hoffmann, Wolfgang

    2014-01-01

    Background: Most persons with dementia live at home and are treated in the primary care. However, the ambulatory health care system in Germany contains a lot of “interface problems” and is not optimized for the future challenges. Innovative concepts like regional networks in dementia care exist on a project level and need to be tested for efficacy to encourage implementation. The goal of the study is the scientific evaluation of an already existing regional dementia network. Methods: Prospective randomized controlled trial of 235 community-living elderly with dementia and their family caregivers of network treatment (n=117) compared to usual care (n=118) in a predominantly rural region. The allocation to intervention or control group was based on network membership of their General Practitioner. Intervention patients received diagnostic evaluation and subsequent treatment according to network guidelines. Main outcome measures were the early contact with a neurologic or psychiatric specialist and dementia-specific medication as well as quality of life of the patients, and as secondary outcomes caregiver burden and caregiver health-related quality of life. Results: Network patients were more likely to receive antidementive drugs (50.5 % vs. 35.8 %; p=0.035) and had more often contact to a neurologist (18.6 % vs. 2.8 %; p<0.001). No group differences were found on patient’s quality of life nor overall effects or treatment by time effects. Intervention caregivers reported no significant improvements in health related quality of life measured by SF-36 and EQ-5D. Conclusion: The management of dementia patients in an interdisciplinary regional network solelyprovides measurable advantages with respect to the provision of dementia-specific medication and utilization of medical treatment i.e. referral rates to specialists. Further evaluation research is needed to identify relevant mechanismsof collaborative processes with respect to their impact on patient and

  14. Caregiver burden among Japanese informal caregivers of cognitively impaired elderly in community settings.

    PubMed

    Hirakawa, Yoshihisa; Kuzuya, Masafumi; Enoki, Hiromi; Hasegawa, Jun; Iguch, Akihisa

    2008-01-01

    Because dementia is a progressive disease, formal long-term care providers and care managers need information on how the severity of cognitive impairment affects caregiver burden in order to better assist family caregivers. However, research to guide care providers in behavioral symptom-management is not well developed. The purpose of this study was to examine the relationship between dementia status and burden of family caregivers. The subjects were 1875 community-dwelling elderly eligible for public long-term care insurance. The data we used in this analysis included the caregivers' and dependents' characteristics. The main outcome was subjective caregiver burden assessed by the Japanese version of the Zarit Burden Interview (J-ZBI). A total of 1559 pairs of dependents and caregivers were included in the analysis. The pairs were sorted into three mutually exclusive categories: no dementia, mild dementia, and severe dementia. Two hundred sixty-one dependents had severe dementia, and 725 had mild dementia. Although differences were found among the dementia categories in levels of caregiver burden according to the J-ZBI before and after adjusting for these baseline variables, the odds ratios equal nearly 1. The present study shows that severity of dementia is not associated with caregiver burden in Japan. PMID:17767968

  15. Concordance of Race or Ethnicity of Interventionists and Caregivers of Dementia Patients: Relationship to Attrition and Treatment Outcomes in the REACH Study

    ERIC Educational Resources Information Center

    McGinnis, Kathleen A.; Schulz, Richard; Stone, Roslyn A.; Klinger, Julie; Mercurio, Rocco

    2006-01-01

    Purpose: We assess the effects of racial or ethnic concordance between caregivers and interventionists on caregiver attrition, change in depression, and change in burden in a multisite randomized clinical trial. Design and Methods: Family caregivers of patients with Alzheimer's disease were randomized to intervention or control groups at six sites…

  16. Information Needs of Family Caregivers of Persons with Cognitive versus Physical Deficits

    ERIC Educational Resources Information Center

    Koenig, Kelly N.; Steiner, Victoria; Pierce, Linda L.

    2011-01-01

    This study compared information needs of caregivers of persons with dementia with caregivers of those who received rehabilitation treatment. Caregivers were provided a 48-item survey and asked to choose their top ten information needs. Dementia caregivers' (n = 33) top needs were dealing with forgetfulness/confusion (91%) and repeating…

  17. Development and Initial Evaluation of the Web-Based Self-Management Program “Partner in Balance” for Family Caregivers of People With Early Stage Dementia: An Exploratory Mixed-Methods Study

    PubMed Central

    de Vugt, Marjolein E; Withagen, Hanneke EJ; Kempen, Gertrudis IJM; Verhey, Frans RJ

    2016-01-01

    Background People with dementia increasingly depend on informal caregivers. Internet-based self-management interventions hold considerable promise for meeting the educational and support needs of early stage dementia caregivers (EDCs) at a reduced cost. Objective This study aimed to (1) develop an online self-management program for EDC to increase self-efficacy and goal attainment, and (2) evaluate the program’s feasibility and report preliminary data on effectiveness. Methods Based on the Medical Research Council (MRC) framework for the development and evaluation of complex interventions, a stepwise approach was adopted to explore potential user needs and develop and validate the content by means of (1) focus group discussions with dementia caregivers (N=28), (2) interviews with dementia care professionals (N=11), and (3) individual think-aloud usability tests with EDC (N=2) and experts (N=2). A pilot evaluation was conducted with EDC (N=17) to test the feasibility and establish preliminary effects. Self-report measures of feasibility were completed after the completion of intervention. Self-efficacy and goal attainment were evaluated before and after the intervention. Results The different steps provided useful information about the needs of potential users regarding the content and delivery of the program. This resulted in the newly developed “Partner in Balance” program. At the start, system failures resulted in a high noncompleter rate (7/17, 41%), but at the end, an acceptable feasibility score of 209 (range 54-234) was found. The convenience of completing the program at home, the tailored content, and the guidance (face-to-face and online) were appraised positively. Preliminary effects on caregiver self-efficacy (P<.05) and goal attainment (T>50) were promising. Conclusions Adaptations were made to the program to limit the amount of system failures and prevent high noncompleter rates. As recommended by the MRC framework, confirming the feasibility and

  18. Information needs of family caregivers of persons with cognitive versus physical deficits.

    PubMed

    Koenig, Kelly N; Steiner, Victoria; Pierce, Linda L

    2011-01-01

    This study compared information needs of caregivers of persons with dementia with caregivers of those who received rehabilitation treatment. Caregivers were provided a 48-item survey and asked to choose their top ten information needs. Dementia caregivers' (n = 33) top needs were dealing with forgetfulness/confusion (91%) and repeating questions/actions (61%) in care recipients. Rehabilitation caregivers' (n = 40) top needs were handling care recipients' mobility problems (75%) and dealing with their own stress (65%). Dementia caregivers focused on care recipients' needs related to behavioral symptoms, whereas rehabilitation caregivers focused on needs related to physical care of care recipients and their own needs. PMID:22087784

  19. Follow-up of an intervention program for caregivers of a relative with dementia living in a long-term care setting: Are there any persistent and delayed effects?

    PubMed

    Ducharme, Francine; Lévesque, Louise; Giroux, Francine; Lachance, Lise

    2005-09-01

    The purpose of this randomized study was to test the persistent and delayed effects of an intervention program entitled "Taking Care of Myself " on selected mental health outcomes of daughter caregivers of a relative with dementia living in a long-term care setting. One group of caregivers took part in the experimental program (EG, n = 45), one in a comparison program offered by an Alzheimer Society (AG, n = 51), and another constituted a control group (CG, n = 41). Effects were verified at the end of the program and 3 months later. Results from prediction analyses reveal that competence dealing with healthcare staff and use of the coping strategy of reframing were persistent effects unique to the EG condition, whereas perceived availability of informal and formal support was a persistent effect in the EG and in the AG. A delayed effect was observed in the AG regarding competence dealing with healthcare staff. These results underline the importance of follow-up assessments of intervention programs and suggest avenues to support caregivers of institutionalized seniors. PMID:16024406

  20. Follow-up of an intervention program for caregivers of a relative with dementia living in a long-term care setting: Are there any persistent and delayed effects?

    PubMed

    Ducharme, Francine; Lévesque, Louise; Giroux, Francine; Lachance, Lise

    2005-09-01

    The purpose of this randomized study was to test the persistent and delayed effects of an intervention program entitled "Taking Care of Myself " on selected mental health outcomes of daughter caregivers of a relative with dementia living in a long-term care setting. One group of caregivers took part in the experimental program (EG, n = 45), one in a comparison program offered by an Alzheimer Society (AG, n = 51), and another constituted a control group (CG, n = 41). Effects were verified at the end of the program and 3 months later. Results from prediction analyses reveal that competence dealing with healthcare staff and use of the coping strategy of reframing were persistent effects unique to the EG condition, whereas perceived availability of informal and formal support was a persistent effect in the EG and in the AG. A delayed effect was observed in the AG regarding competence dealing with healthcare staff. These results underline the importance of follow-up assessments of intervention programs and suggest avenues to support caregivers of institutionalized seniors.

  1. Change in Indices of Distress among Latino and Anglo Female Caregivers of Elderly Relatives with Dementia: Site-Specific Results from the REACH National Collaborative Study

    ERIC Educational Resources Information Center

    Gallagher-Thompson, Dolores; Coon, David W.; Solano, Nancy; Ambler, Christian; Rabinowitz, Yaron; Thompson, Larry W.

    2003-01-01

    Purpose: Few empirical studies have compared the efficacy between psychoeducational (skill-building) approaches for reducing caregivers' psychological distress and interventions modeled after typical community-based support groups. We compare the impact of two distinct interventions on Anglo and Latino caregivers of elderly relatives with…

  2. [Apathy and Dementia].

    PubMed

    Okada, Kazunori; Yamaguchi, Shuhei

    2016-07-01

    Apathy, which has been attracting attention since Marin's report in 1990, is ubiquitous among neuropsychiatric diseases. It has a major impact on the quality of life in both patients and their caregivers and impairs rehabilitation and outcome. Furthermore, apathy is important as a prodromal syndrome in the development of dementia in mild cognitive impairment (MCI). We reviewed the neurobiological basis, prevalence and assessment of potential benefits of non-pharmacologic and pharmacologic interventions for apathy in MCI and dementia. PMID:27395461

  3. [Dementia: management and prevention].

    PubMed

    Daher, Oscar; Nguyen, Sylvain; Smith, Cindi; Büla, Christophe; Démonet, Jean-François

    2016-04-20

    Dementia represents a great challenge for health care providers. Detection of cognitive impairment is critical for early diagnosis of dementia. Early diagnosis allows to initiate individualized management that focuses on maintaining patient's autonomy and supporting their caregivers. Proposed multimodal interventions include physical activity, cognitive training, mediterranean diet, and management of cardiovascular risk factors. Before the initiation of pro-cognitive therapy, medication review is essential to evaluate current treament and determine specific therapeutic objectives, based on patient's overall health and preferences. Overall risk reduction for dementia revolves around similar measures that target physical activity, cognition, diet and management of cardiovascular risk factors.

  4. [Dementia: management and prevention].

    PubMed

    Daher, Oscar; Nguyen, Sylvain; Smith, Cindi; Büla, Christophe; Démonet, Jean-François

    2016-04-20

    Dementia represents a great challenge for health care providers. Detection of cognitive impairment is critical for early diagnosis of dementia. Early diagnosis allows to initiate individualized management that focuses on maintaining patient's autonomy and supporting their caregivers. Proposed multimodal interventions include physical activity, cognitive training, mediterranean diet, and management of cardiovascular risk factors. Before the initiation of pro-cognitive therapy, medication review is essential to evaluate current treament and determine specific therapeutic objectives, based on patient's overall health and preferences. Overall risk reduction for dementia revolves around similar measures that target physical activity, cognition, diet and management of cardiovascular risk factors. PMID:27276724

  5. Caregiver Well-Being

    PubMed Central

    Dujela, Carren; Smith, André

    2015-01-01

    We know much about caregiving women compared with caregiving men and caregiving spouses compared with caregiving adult children. We know less about the intersections of relationship and gender. This article explores this intersection through the well-being (burden and self-esteem) of caregivers to family members with dementia. Throughout British Columbia, Canada, 873 caregivers were interviewed in person for on average, over 1½ hours. The results reveal that daughters experience the highest burden but also the highest self-esteem, suggesting the role is less salient for their self-identities. Wives emerge as the most vulnerable of the four groups when both burden and self-esteem are considered. The data confirm the usefulness of the intersectionality framework for understanding co-occupancy of more than one status and indicate that positive cognitive well-being and negative affective well-being can be differentially related. Multivariate analyses confirm the importance of caregiver, not patient, characteristics for burden and self-esteem. PMID:25651586

  6. The Effects of Duration of Caregiving on Institutionalization

    ERIC Educational Resources Information Center

    Gaugler, Joseph E.; Kane, Robert L.; Kane, Rosalie A.; Clay, Ted; Newcomer, Robert C.

    2005-01-01

    Purpose: Our objective in this analysis was to determine how the duration of caregiving interacts with key care demands (i.e., severity of problem behaviors) to influence the institutionalization of individuals suffering from dementia. Methods: We utilized multiregional data from 4,761 caregivers of individuals with dementia over a 3-year period.…

  7. Caregiver Depression

    MedlinePlus

    ... will not sell or share your name. Caregiver Depression Tweet Bookmark this page | Email | Print Many caregivers ... depression See your doctor Treatment Coping Symptoms of depression Caregiving is hard — and can lead to feelings ...

  8. Caregiver Stigma and Burden in Memory Disorders: An Evaluation of the Effects of Caregiver Type and Gender

    PubMed Central

    Kahn, Phoebe V.; Wishart, Heather A.; Randolph, Jennifer S.; Santulli, Robert B.

    2016-01-01

    Despite considerable gains in public awareness of dementia, dementia patients and their caregivers continue to be stigmatized. Previous work has explored stigma and burden among adult children of persons with dementia in Israel, but no similar data exist for spousal caregivers or caregivers in general in the United States. This study examines the differences in stigma and burden experienced by spousal and adult child caregivers and male and female caregivers of persons with dementia. Eighty-two caregivers were given the Zarit Burden Inventory Short Form (ZBI) and the Caregiver Section of the Family Stigma in Alzheimer's Disease Scale (FS-ADS-C). Scores on the FS-ADS-C and ZBI were positively correlated (rs = .51, p < .001). Female caregivers reported experiencing more stigma on the FS-ADS-C (t(80) = −4.37, p < .001) and more burden on the ZBI (t(80) = −2.68, p = .009) compared to male caregivers, and adult child caregivers reported experiencing more stigma on the FS-ADS-C (t(30.8) = −2.22, p = .034) and more burden on the ZBI (t(80) = −2.65, p = .010) than spousal caregivers. These results reinforce the importance of support for caregivers, particularly adult child and female caregivers who may experience higher levels of stigma and burden. PMID:26941795

  9. Evaluating abuse in the patient with dementia.

    PubMed

    Tronetti, Pamela

    2014-11-01

    For patients with dementia, abuse ranges from subtle scams to outright physical violence. As dementia progresses, abuse escalates. The stages of dementia--mild cognitive impairment, mild dementia, moderate dementia, and severe dementia--lend themselves to varied presentations of abuse. Knowing which types of abuse are more prominent at each stage aids the clinician in anticipating risk of abuse and patient and caregiver needs. Interviewing the victim is crucial in uncovering, documenting, and intervening in an abuse situation. A clinician who is skilled in drawing out the facts while remaining supportive of the patient is key in ending the victimization.

  10. Caring for Caregivers: Bridging the Care Gap.

    PubMed

    Williams, A Paul; Peckham, Allie; Kuluski, Kerry; Lum, Janet; Morton-Chang, Frances

    2015-01-01

    While drawing on different perspectives, the insightful responses of our commentators all highlight the increasingly crucial role of informal, and mostly unpaid caregivers. They also raise key questions. The first question, "how should we refer to caregivers," pushes us to acknowledge the diversity of caregiver characteristics, contexts and roles. The second, "how should we understand the caregiver 'problem'," reminds us that although often thought of as an individual matter, caregiving is a public policy issue requiring broader systems thinking and approaches. The third, "what should we do about it," draws attention to the importance of building and strengthening social networks to support caregivers and bridge a "growing care gap." We offer the example of Japan which, as part of its national dementia care policy, is now encouraging the development of inter-generational dementia-friendly communities. PMID:26960243

  11. Caregiver Assessment

    ERIC Educational Resources Information Center

    Feinberg, Lynn

    2008-01-01

    Assessment is a critical step in determining appropriate support services. This article discusses "caregiver assessment," a systematic process of gathering information to describe a caregiving situation. Caregiver assessment identifies the particular problems, needs, resources, and strengths of the family caregiver and approaches issues from the…

  12. Impact of home care management on the involvement of informal caregivers by formal caregivers.

    PubMed

    van Wieringen, Marieke; Broese van Groenou, Marjolein I; Groenewegen, Peter

    2015-01-01

    This study explores the link between management characteristics of home care agencies and the involvement of informal caregivers in caregiving. Based on a study of policy documents of two agencies and semi-structured interviews with five team managers and 31 formal caregivers, we conclude that, although the importance of involving informal caregivers is emphasized in official documentation, actual contact with informal caregivers is often lacking. Comparison of the work processes of the two agencies shows that contact with informal caregivers and their potential involvement are enhanced by smaller teams, less task division, and clarity about the responsibilities of formal caregivers.

  13. Challenges in Efficacy Research: The Case of Feeding Alternatives in Patients with Dementia

    PubMed Central

    ZAPKA, Jane; AMELLA, Elaine J.; MAGWOOD, Gayenell S.; MADISETTI, Mohan; GARROW, Donald A.; ASELAGE, Melissa B.

    2014-01-01

    Aims To explore factors at the family caregiver and nursing home administrative levels that may affect participation in a clinical trial to determine the efficacy of hand feeding versus percutaneous gastrostomy tube feeding in persons with late-stage dementia. Background Decision-making regarding use of tube feeding vs. hand feeding for persons with late-stage dementia is fraught with practical, emotional and ethical issuesand is not informed by high levels of evidence. Design Qualitative case study. Methods Transcripts of focus groups with family caregivers were reviewed for themes guided by behavioral theory. Analyses of notes from contacts with nursing home administrators and staff were reviewed for themes guided by an organizational readiness model. Data were collected between the years 2009–2012. Results Factors related to caregiver willingness to participate included understanding of the prognosis of dementia, perceptions of feeding needs and clarity about research protocols. Nursing home willingness to participate was influenced by corporate approval, concerns about legal and regulatory issues and prior relationships with investigators. Conclusion Participation in rigorous trials requires lengthy navigation of complex corporate requirements and training competent study staff. Objective deliberation by caregivers will depend on appropriate recruitment timing, design of recruitment materials and understanding of study requirements. The clinical standards and policy environment and the secular trends therein have relevance to the responses of people at all levels. PMID:24612316

  14. Parkinson's disease and dementia.

    PubMed

    Padovani, A; Costanzi, C; Gilberti, N; Borroni, B

    2006-03-01

    Parkinson's disease (PD) is one of the most common neurodegenerative disorders, affecting about 1% of the population over the age of 60. In addition to motor abnormalities, there are several non-motor signs and symptoms that may create a considerable burden for patients and care-givers. Dementia is common and affects approximately 40% of PD patients during the course of the disease, the risk for the development of dementia being 6 times higher than in non-PD age-matched controls. In most cases, PD patients with dementia (PDD) display a dysexecutive syndrome and visuospatial deficits, while memory is relatively unaffected. The overlap between PDD and dementia with Lewy bodies suggests that they likely share similar underlying neuropathological processes.

  15. Coping with Caregiving: Take Care of Yourself While Caring for Others

    MedlinePlus

    ... can also create unique challenges to caregivers. The health care costs alone can take an enormous toll. One recent ... of online caregiving resources. References: The Burden of Health Care Costs for Patients with Dementia in the Last 5 ...

  16. Multi-Infarct Dementia

    MedlinePlus

    ... Funding Information Research Programs Training & Career Awards Enhancing Diversity Find People About NINDS NINDS Multi-Infarct Dementia ... News From NINDS | Find People | Training | Research | Enhancing Diversity Careers@NINDS | FOIA | Accessibility Policy | Contact Us | Privacy ...

  17. Missed and Delayed Diagnosis of Dementia in Primary Care: Prevalence and Contributing Factors

    PubMed Central

    Bradford, Andrea; Kunik, Mark E.; Schulz, Paul; Williams, Susan P.; Singh, Hardeep

    2009-01-01

    Dementia is a growing public health problem for which early detection may be beneficial. Currently, the diagnosis of dementia in primary care is dependent mostly on clinical suspicion based on patient symptomsor caregivers’ concerns and is prone to be missed or delayed. We conducted a systematic review of the literature to ascertain the prevalence and contributing factors for missed and delayed dementia diagnoses in primary care. Prevalence of missed and delayed diagnosis was estimated by abstracting quantitative data from studies of diagnostic sensitivity among primary care providers. Possible predictors and contributory factors were determined from the text of quantitative and qualitative studies of patient-, caregiver-, provider-, and system-related barriers. Overall estimates of diagnostic sensitivity varied among studies and appeared to be in part a function of dementia severity, degree of patient impairment, dementia subtype, and frequency of patient-provider contact. Major contributory factors included problems with attitudes and patient-provider communication, educational deficits, and system resource constraints. The true prevalence of missed and delayed diagnoses of dementia is unknown but appears to be high. Until the case for dementia screening becomes more compelling, efforts to promote timely detection should focus on removing barriers to diagnosis. PMID:19568149

  18. [Psychosocial interventions in dementia].

    PubMed

    Kurz, A

    2013-01-01

    Psychosocial interventions improve cognitive abilities (cognitive stimulation, cognitive training), enhance emotional well-being (activity planning, reminiscence), reduce behavioral symptoms (aromatherapy, music therapy) and promote everyday functioning (occupational therapy). Through these effects they reinforce and augment pharmacological treatments for dementia. In addition, psychosocial interventions complement the treatment of patients by supporting family caregivers (educational groups, support programs). The potential of psychosocial interventions in dementia needs to be explored further in studies using improved methodology to determine effective components, clinical relevance and duration of effects, predictors of individual treatment response and health-economic implications. PMID:23306213

  19. [Psychosocial interventions in dementia].

    PubMed

    Kurz, A

    2013-01-01

    Psychosocial interventions improve cognitive abilities (cognitive stimulation, cognitive training), enhance emotional well-being (activity planning, reminiscence), reduce behavioral symptoms (aromatherapy, music therapy) and promote everyday functioning (occupational therapy). Through these effects they reinforce and augment pharmacological treatments for dementia. In addition, psychosocial interventions complement the treatment of patients by supporting family caregivers (educational groups, support programs). The potential of psychosocial interventions in dementia needs to be explored further in studies using improved methodology to determine effective components, clinical relevance and duration of effects, predictors of individual treatment response and health-economic implications.

  20. Caregiver Stress

    MedlinePlus

    ... 2005). Psychophysiological mediators of caregiver stress and differential cognitive decline . Psychology and Aging, 20 (3), 402–411. Pew Research ... 2005). Psychophysiological mediators of caregiver stress and differential cognitive decline . Psychology and Aging, 20 (3), 402–411. Return to ...

  1. Caregiving Statistics

    MedlinePlus

    ... more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental ... caregiving families. In every state and DC the poverty rate is higher among families with members with ...

  2. Neuropsychiatric aspects of dementia.

    PubMed

    Ford, Andrew H

    2014-10-01

    Dementia affects approximately 6.5% of people over the age of 65. Whilst cognitive impairment is central to the dementia concept, neuropsychiatric symptoms are invariably present at some stage of the illness. Neuropsychiatric symptoms result in a number of negative outcomes for the individual and their caregivers and are associated with higher rates of institutionalization and mortality. A number of factors have been associated with neuropsychiatric symptoms including neurobiological changes, dementia type, and illness severity and duration. Specific patient, caregiver and environmental factors are also important. Neuropsychiatric symptoms can be broadly divided into four clusters: psychotic symptoms, mood/affective symptoms, apathy, and agitation/aggression. Neuropsychiatric symptoms tend to persist over time although differing symptom profiles exist at various stages of the illness. Assessment should take into account the presenting symptoms together with an appreciation of the myriad of likely underlying causes for the symptoms. A structured assessment/rating tool can be helpful. Management should focus on non-pharmacological measures initially with pharmacological approaches reserved for more troubling symptoms. Pharmacological approaches should target specific symptoms although the evidence-base for pharmacological management is quite modest. Any medication trial should include an adequate appreciation of the risk-benefit profile in individual patients and discussion of these with both the individual and their caregiver.

  3. Neuroimaging Correlates of Everyday Action in Dementia

    PubMed Central

    SEIDEL, G. A.; GIOVANNETTI, T.; PRICE, C. C.; TANNER, J.; MITCHELL, S.; PPIG, J.; LIBON, D. J.

    2013-01-01

    The everyday, functional impairments associated with dementia remain poorly understood from a neuropsychological perspective. This study investigated relations between brain structure volumes and two measures of everyday action – caregiver questionnaire and direct assessment – in 57 participants with dementia. Results showed that caregiver ratings reflecting more functional impairment were strongly associated with smaller volumes of deep white matter. Direct assessment of everyday task performance in a subsample revealed relations between unique neurological substrates and discrete everyday action error types. Findings emphasize differences in functional assessment methods and highlight the role of white matter in functional deficits in dementia. PMID:24131088

  4. Depression associated with dementia.

    PubMed

    Gutzmann, H; Qazi, A

    2015-06-01

    Depression and cognitive disorders, including dementia and mild cognitive impairment, are common disorders in old age. Depression is frequent in dementia, causing distress, reducing the quality of life, exacerbating cognitive and functional impairment and increasing caregiver stress. Even mild levels of depression can significantly add to the functional impairment of dementia patients and the severity of psychopathological and neurological impairments increases with increasing severity of depression. Depressive symptoms may be both a risk factor for, as well as a prodrome of dementia. Major depressive syndrome of Alzheimer's disease may be among the most common mood disorders of older adults. Treating depression is therefore a key clinical priority to improve the quality of life both of people with dementia as well as their carergivers. Nonpharmacological approaches and watchful waiting should be attempted first in patients who present with mild to moderate depression and dementia. In cases of severe depression or depression not able to be managed through nonpharmacological means, antidepressant therapy should be considered. PMID:25962363

  5. Concept Analysis: Alzheimer’s Caregiver Stress

    PubMed Central

    Llanque, Sarah; Savage, Lynette; Rosenburg, Neal; Honor’s, BA; Caserta, Michael

    2015-01-01

    AIM The aim of this article was to analyze the concept of caregiver stress in the context of caring for a person with Alzheimer’s disease and related dementias. BACKGROUND Currently, there are more than 15 million unpaid care-givers for persons suffering from Alzheimer’s disease and related dementias. This unpaid care can be stressful for caregivers due to the chronic nature of the disease process, as well as other factors. METHOD The paper incorporates the modified method of Wilson’s concept analysis procedure to analyze the concept of caregiver stress. DATA SOURCES A review of the literature was undertaken using the Cumulative Index to Nursing and Allied Health Literature, Google Scholar, and PubMed. RESULTS A theoretical definition of caregiver stress is provided, and the defining attributes, related concepts, antecedents, and consequences of caregiver stress are proposed, and case studies are presented. CONCLUSIONS The analysis demonstrates that caregiver stress is the unequal exchange of assistance among people who stand in close relationship to one another, which results in emotional and physical stress on the caregiver. Implications for future nursing research and practice conclude the paper. PMID:24787468

  6. [Relation between dementia and circadian rhythm disturbance].

    PubMed

    Nakamura, Kei; Meguro, Kenichi

    2014-03-01

    Dementia and circadian rhythm disturbance are closely linked. First, dementia patient shows circadian rhythm disorders (e.g. insomnia, night wandering, daytime sleep). These symptoms are a burden for caregivers. Circadian rhythm disturbance of dementia relates ADL and cognitive impairment, and diurnal rhythm disorder of blood pressure and body temperature. Some study shows that circadian rhythm disorders in dementia are a disturbance of neural network between suprachiasmatic nucleus and cerebral white matter, and involvement of both frontal lobes, left parietal and occipital cortex, left temporoparietal region. The first-line treatment of circadian rhythm disturbance should be non-drug therapy (e.g. exercise, bright light exposure, reduce caffeine intake, etc.). If physician prescribe drugs, keep the rule of low-dose and short-term and avoid benzodiazepines. Atypical antipsychotic drugs like risperidone and some antidepressants are useful for treatment of insomnia in dementia. But this usage is off-label. So we must well inform to patient and caregiver, and get consent about treatment. Second, some study shows circadian rhythm disorder is a risk factor of dementia. However, we should discuss that circadian rhythm disturbance is "risk factor of dementia" or "prodromal symptom of dementia". If a clinician finds circadian rhythm disorder in elderly people, should be examined cognitive and ADL function, and careful about that patients have dementia or will develop dementia.

  7. Dementia in Parkinson's Disease.

    PubMed

    Anderson, Karen E.

    2004-05-01

    , and case reports, cholinesterase inhibitors may be tried for treatment of dementia in PD, as long as the patient and caregivers understand that these agents are being used on an off-label basis. Surgical intervention, such as deep brain stimulation of the subthalamic nucleus or globus pallidus internus, although useful for treatment of motor symptoms in some PD patients, does not improve cognitive function in most cases and may actually worsen cognition in patients with pre-existing dementia. There is no specific exercise regimen or dietary guidelines for patients with PD who develop dementia. However, patients should be encouraged to lead a healthy lifestyle; this may improve overall well-being, which could impact positively on cognition function. Similarly, although assistive devices have not been developed for people with PD who have memory loss, any aid that increases mobility will probably improve mental and physical function. Clinicians should be mindful of the increased caregiver burden posed by PD patients who also have dementia. They should intervene appropriately to prevent caregiver distress and "burn out." Herbal and nutritional supplements have not been shown in clinical trials to be beneficial for treatment of any type of dementia, and thus are not recommended for PD patients with cognitive decline.

  8. Developing a Measurement Strategy for Assessing Family Caregiver Skills: Conceptual Issues

    PubMed Central

    Farran, Carol J.; McCann, Judith J.; Fogg, Louis G.; Etkin, Caryn D.

    2009-01-01

    This report presents a conceptual approach to assessing skills of family caregivers for persons with Alzheimer’s disease and recommends next steps for development of this science. Researchers used multiple methods to develop a conceptual strategy for assessing family caregiver skills. Study participants included clinical/outreach staff from an Alzheimer’s Disease Center, nursing faculty with expertise in dementia care, and family caregivers. Mixed methods contributed to the conceptual clarification of caregiving skill and to the development of three approaches to assessing caregiver skill: caregiver self report, clinician assessment, and direct observational assessment. Caregiver effectiveness has the potential to affect the process of caregiving and outcomes for the person with dementia and caregiver. PMID:20179779

  9. Family Caregivers' Patterns of Positive and Negative Affect

    ERIC Educational Resources Information Center

    Robertson, Suzanne M.; Zarit, Steven H.; Duncan, Larissa G.; Rovine, Michael J.; Femia, Elia E.

    2007-01-01

    Stressful and positive family caregiving experiences were examined as predictors of caregivers' patterns of positive and negative affect in a sample of families providing care for a relative with dementia (N = 234). Four affect pattern groups were identified: (a) Well Adjusted (i.e., high positive affect, low negative affect); (b) Ambiguous (i.e.,…

  10. Physical activity in caregivers: What are the psychological benefits?

    PubMed

    Loi, Samantha M; Dow, Briony; Ames, David; Moore, Kirsten; Hill, Keith; Russell, Melissa; Lautenschlager, Nicola

    2014-01-01

    Previous research demonstrates that physical activity has psychological benefits for people of all ages. However, it is unclear whether people caring for a frail or ill relative would derive similar psychological benefits, considering the potentially stressful caregiver role. This article reviews the current literature describing the effect of physical activity interventions on the psychological status of caregivers. A search from January 1975 to December 2012 identified five intervention studies investigating physical activity and psychological status in caregivers. These focused on female Caucasian caregivers who were older than 60 years. The physical activity interventions improved stress, depression and burden in caregivers, but small sample sizes, short-term follow up and varying results limited the generalizability of the findings. There were few trials investigating male caregivers, and most care-recipients were people with dementia. Studies with caregivers of different ages and gender, with a range of physical activity interventions, are needed to clarify whether physical activity has psychological benefits for caregivers. PMID:24798641

  11. [Evaluation of our psycho-educative program by participating caregivers].

    PubMed

    Bier, J C; Van den Berge, D; de Wouters d'Oplinter, N; Bosman, N; Fery, P

    2010-09-01

    Facing difficulties due to dementia syndromes, systemic care is necessary. Amongst therapies assessed specifically to caregivers, psychoeducative steps seem to be the strongest effective one on neuropsychiatrics symptoms. Psychoeducations tend to teach the caregivers to modify their interactions with patients via a better understanding of illnesses and patients. Our training "Pour mieux vivre avec la maladie d'Alzheimer", applied in groups of eight to twelve persons, consists in twelve sessions of two hours each. To assure the biggest possible availability, we recently incorporated the concomitant coverage of patients into artistic workshops. These sessions of art-therapy realized in parallel to our psychoeducative program will thus be estimated according to the same rigorous methodology. The critical evaluations realized by participants at the end of our program reflect the outcome of our main objective (to teach to modify interactions with the patients) while contributing to the improvement of social contacts and to the learning of calling to existing helps. These preliminary results strongly argue for the pursuit and even extension of this kind of caregiver's management.

  12. Caregivers' Reasons for Nursing Home Placement: Clues for Improving Discussions with Families Prior to the Transition

    ERIC Educational Resources Information Center

    Buhr, Gwendolen T.; Kuchibhatla, Maragatha; Clipp, Elizabeth C.

    2006-01-01

    Purpose: This study identifies the relative importance of reasons for institutionalization endorsed by caregivers of patients with dementia; examines the relationship between caregivers' reasons for institutionalization and indicators of caregiver and patient physical and emotional functioning measured in the prior year; and compares, on these…

  13. [Grieving among relatives and caregivers].

    PubMed

    Pascual, Angel María; Santamaría, Juan Luis

    2009-11-01

    This article provides a definition and description of grief, its characteristics, and the current explanatory models of this phenomenon (the stage model, task model, constructivist model and dual process model). The authors argue that a state of mourning in advance is produced in the process of dementia as a result of significant relational loss before death and describe the risk factors for complicated grief in caregivers: overload, lack of personal and material resources, delegation of care, and complex feelings such as guilt. The need for healthcare organizations to provide professional caregivers with the appropriate means to help with grief and to develop their own measures to prevent burnout is stressed. These measures could include protocols that provide bereavement intervention with the family, the primary caregiver, other patients and/or residents and the professional caregiving team. Finally, losses in persons with dementia must be taken into consideration, avoiding phenomena such as silencing and overprotection and encouraging acceptance and emotional support of their pain so that organic and emotional complications do not occur.

  14. Helping Memory-Impaired Elders: A Guide for Caregivers. A Pacific Northwest Extension Publication. PNW 314.

    ERIC Educational Resources Information Center

    Schmall, Vicki L.; Cleland, Marilyn

    This cooperative extension bulletin is designed to help family and professional caregivers understand dementia in later life and learn to cope more effectively with the changes resulting from a progressive dementing illness. The first three sections describe the differences between senility and dementia, causes of dementia, and adjustments that…

  15. 77 FR 50548 - Agency Information Collection: (PACT Clinical Innovation Study: Engaging Caregivers in the Care...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-08-21

    ... Veterans With Dementia); Comment Request AGENCY: Veterans Health Administration, Department of Veterans... being requested for information needed to improve dementia care for patients and care givers. DATES...: Engaging Caregivers in the Care of Veterans with Dementia, VA Form 10-0537, Appendices a-u. OMB...

  16. Dementia care in rural China

    PubMed Central

    2013-01-01

    Dementia is a major cause of disability and has immense cost implications for the individual suffering from the condition, family caregivers and society. Given the high prevalence of dementia in China with its enormous and rapidly expanding population of elderly adults, it is necessary to develop and test approaches to the care for patients with this disorder. The need is especially great in rural China where access to mental healthcare is limited, with the task made more complex by social and economic reforms over the last 30 years that have transformed the Chinese family support system, family values and health delivery systems. Evidence-based collaborative care models for dementia, depression and other chronic diseases that have been developed in some Western countries serve as a basis for discussion of innovative approaches in the management of dementia in rural China, with particular focus on its implementation in the primary care system. PMID:24427180

  17. Social commitment robots and dementia.

    PubMed

    Roger, Kerstin; Guse, Lorna; Mordoch, Elaine; Osterreicher, Angela

    2012-03-01

    In 2010, approximately 500,000 Canadians suffered from a dementia-related illness. The number of sufferers is estimated to double in about 25 years. Due to this growing demographic, dementia (most frequently caused by Alzheimer's disease) will increasingly have a significant impact on our aging community and their caregivers. Dementia is associated with challenging behaviours such as agitation, wandering, and aggression. Care providers must find innovative strategies that facilitate the quality of life for this population; moreover, such strategies must value the individual person. Social commitment robots - designed specifically with communication and therapeutic purposes - provide one means towards attaining this goal. This paper describes a study in which Paro (a robotic baby harp seal) was used as part of a summer training program for students. Preliminary conclusions suggest that the integration of social commitment robots may be clinically valuable for older, agitated persons living with dementia in long-term care settings.

  18. Discipline in chaos: Foucault, dementia and aging in India.

    PubMed

    Brijnath, Bianca; Manderson, Lenore

    2008-12-01

    In India, care work for people in late-stage dementia is primarily conducted in the home. Using source material from urban India and drawing on Foucauldian theory, we illustrate the significance of three power/knowledge scripts in this context: social and cultural notions of acceptable, public bodies; medicalized forms of care; and the cultural contexts of the individual caregivers. The caregiver is the embodiment of these discourses and is charged with the task of mapping discipline onto inherently undisciplinable bodies. A tension exists between the caregiver's struggle to contain the unruliness of the person with dementia and, simultaneously, to act as a broker between the world of the care-recipient and the social world. We conclude that although the caregiver is the starting point for the exercise of discipline, the three power/knowledge scripts that inform care work are as much about surveying, routinizing and mobilizing caregivers' bodies as they are about disciplining the bodies of people with dementia.

  19. A non-pharmacologic approach to address challenging behaviors of Veterans with dementia: description of the tailored activity program-VA randomized trial

    PubMed Central

    2013-01-01

    Background Behavioral symptoms accompanying dementia are associated with increased health care costs, reduced quality of life and daily functioning, heightened family caregiver burden, and nursing home placement. Standard care typically involves pharmacologic agents, but these are, at best, modestly effective, carry serious risks, including mortality, and do not address behavioral symptoms families consider most distressful and which may prompt nursing home placement. Given dementia’s devastating effects and the absence of an imminent cure, the Veterans Administration has supported the development and testing of new approaches to manage challenging behaviors at home. Methods/Design The Tailored Activity Program – Veterans Administration is a Phase III efficacy trial designed to reduce behavioral symptoms in Veterans with dementia living with their caregivers in the community. The study uses a randomized two-group parallel design with 160 diverse Veterans and caregivers. The experimental group receives a transformative patient-centric intervention designed to reduce the burden of behavioral symptoms in Veterans with dementia. An occupational therapist conducts an assessment to identify a Veteran’s preserved capabilities, deficit areas, previous roles, habits, and interests to develop activities tailored to the Veteran. Family caregivers are then trained to incorporate activities into daily care. The attention-control group receives bi-monthly telephone contact where education on topics relevant to dementia is provided to caregivers. Key outcomes include reduced frequency and severity of behavioral symptoms using the 12-item Neuropsychiatric Inventory (primary endpoint), reduced caregiver burden, enhanced skill acquisition, efficacy using activities, and time spent providing care at 4 months; and long-term effects (8 months) on the Veteran’s quality of life and frequency and severity of behavioral symptoms, and caregiver use of activities. The programs

  20. The influence of relationships on personhood in dementia care: a qualitative, hermeneutic study

    PubMed Central

    2013-01-01

    Background In dementia personhood can be understood as increasingly concealed rather than lost. The sense of being a person evolves in relationships with others. The aim of this study was to increase the understanding of the nature and quality of relationships between persons with dementia, family carers and professional caregivers and how these relationships influenced personhood in people with dementia. Methods This Norwegian study had a qualitative hermeneutical design based on ten cases. Each case consisted of a triad: the person with dementia, the family carer and the professional caregiver. Inclusion criteria for persons with dementia were (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating score 2 ie. moderate dementia (4) able to communicate verbally. A semi-structured interview guide was used in interviews with family carers and professional caregivers. Field notes were written after participant observation of interactions between persons with dementia and professional caregivers during morning care or activities at a day care centre. Data were analysed in two steps: (1) inductive analysis with an interpretive approach and (2) deductive analysis, applying a theoretical framework for person-centred care. Results Relationships that sustained personhood were close emotional bonds between family carers and persons with dementia and professional relationships between caregivers and persons with dementia. Relationships that diminished personhood were task-centred relationships and reluctant helping relationships between family carers and persons with dementia and unprofessional relationships between caregivers and persons with dementia. Conclusions A broad range of relationships was identified. Understanding the complex nature and quality of these relationships added insight as to how they influenced the provision of care and the personhood of persons with dementia. Personhood was not only bestowed upon them by family carers and

  1. Neuropsychiatric management of young-onset dementias.

    PubMed

    Shinagawa, Shunichiro

    2015-06-01

    A combination of pharmacologic and nonpharmacologic approaches is necessary for the appropriate neuropsychiatric management of patients with young-onset dementia. Nonpharmacologic interventions, including psychological management, environmental strategies, and caregiver's support, should be the first choice for neuropsychiatric management. Pharmacologic interventions differ according to the underlying causes of dementia; thus, differential diagnoses are very important. Antipsychotics should be prescribed carefully; they should be used for the shortest time possible, at the lowest possible dose.

  2. Factors Affecting the Outcomes of Hospitalized Dementia Patients: From Home to Hospital to Discharge.

    ERIC Educational Resources Information Center

    Cox, Carole; Verdieck, Mary Jeanne

    1994-01-01

    Interviewed 179 caregivers of hospitalized patients and studied discharge decisions to examine factors associated with willingness to continue in caregiving role after hospitalization of relative with dementia. Caregivers initially undecided about discharge plans were likely to seek placement for patients with more severe cognitive impairment,…

  3. Measuring Family System Characteristics in Families Caring for Dementia Patients.

    ERIC Educational Resources Information Center

    Niederehe, George; And Others

    This paper describes an ongoing study evaluating families that provide in-home care to elderly relatives wth dementia. Characteristics of the study, which include a focus on progressive senile dementia, use of a clinical approach, longitudinal design, descriptive nature, focus on the dyad of patient and primary caregiver, and use of videotaping…

  4. The use of socially assistive robots for dementia care.

    PubMed

    Huschilt, Julie; Clune, Laurie

    2012-10-01

    Innovative solutions for dementia care are required to address the steady rise in adults living with dementia, lack of adequate staffing to provide high-quality dementia care, and the need for family caregivers to provide care for their loved ones in the home. This article provides an overview of the use of socially assistive robots (SARs) to offer support as therapists, companions, and educators for people living with dementia. Social, ethical, and legal challenges associated with the use of robotic technology in patient care and implications for the use of SARs by nurses are discussed. These items considered, the authors conclude that SARs should be considered as a viable way to assist people living with dementia to maintain their highest possible level of independence, enhance their quality of life, and provide support to overburdened family caregivers. Further research is needed to evaluate the merits of this technological approach in the care of adults with dementia.

  5. Caregiving for Alzheimer's Disease or Other Dementia

    MedlinePlus

    ... Recommendations The Guide State & Local Planning Examples GIS Mapping Data Sources Registries Sheltering Communication & Messaging Planning for ... General Information about the Older Adult Population Healthy Brain Initiative Healthy Brain Research Network Road Map Logic ...

  6. Apraxias in Neurodegenerative Dementias

    PubMed Central

    Chandra, Sadanandavalli Retnaswami; Issac, Thomas Gregor; Abbas, Mirza Masoom

    2015-01-01

    Background: Apraxia is a state of inability to carry out a learned motor act in the absence of motor, sensory or cerebellar defect on command processed through the Praxis circuit. Breakdown in default networking is one of the early dysfunction in cortical dementias and result in perplexity, awkwardness, omission, substitution errors, toying behavior and unrecognizable gestures in response to command with voluntary reflex dissociation where, when unobserved patient will carry out reflex movements normally. Awareness into the organicity of these phenomenas will help in early diagnosis, which will help in initiating appropriate treatment and slowing down the progression of the disease. Aims and Objectives: The aim was to look for the various kinds of apraxias in patients with dementia using appropriate simple tests. Patients and Methods: Three hundred patients satisfying Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition criteria for dementia were evaluated in detail with mandatory investigations for dementia followed by testing for ideational, ideomotor, limb-kinetic, buccopharyngeal, dressing apraxia, constructional apraxia and gait apraxias in addition to recording of rare apraxias when present. Results: Alzheimer's disease showed maximum association with apraxias in all the phases of the disease ideational, ideomotor, dressing and constructional apraxias early and buccopharyngeal and gait apraxia late. Frontotemporal lobe dementia showed buccopharyngeal and gait apraxias late into the disease. Cortical basal ganglionic degeneration showed limb apraxias and diffuse Lewy body disease showed more agnosias and less apraxias common apraxias seen was Ideational and Ideomotor. Conclusion: Recognition of the apraxias help in establishing organicity, categorization, caregiver education, early strategies for treatment, avoiding anti-psychotics and introducing disease modifying pharmacotherapeutic agents and also prognosticating. PMID:25722511

  7. Information needs and sources of family caregivers of home elderly patients.

    PubMed

    Hirakawa, Yoshihisa; Kuzuya, Masafumi; Enoki, Hiromi; Uemura, Kazumasa

    2011-01-01

    Meeting the information needs of family caregivers in a timely and appropriate way is a key concern of home care. The present study aimed to explore the following two areas: (a) the priority information needs and sources of family caregivers of home elderly patients and (b) the differences in information needs according to severity of dementia. The subjects were 475 family caregivers of home elderly patients residing in Nagoya city. Data was collected through questionnaires. Severity of dementia was evaluated according to the criteria of the public long-term care insurance policy (levels 0-5). The top 3 items they perceived as of most concern were dementia, first aid, and available public long-term care insurance services. A few respondents felt the need for information on public long-term care insurance services. Nearly half of the caregivers were interested in food and nutrition. The respondents were more likely to receive information from their care managers or physicians than any other source. Caregivers of elderly dependents with severe dementia reported a greater need for information on the spread of dementia, dementia-specific care, or the negative effects of dementia on family and neighborhood. Our results provide useful information on how family caregivers should be educated.

  8. Health Care Hassles of Caregivers to the Chronically Ill

    ERIC Educational Resources Information Center

    Keith, Pat M.

    2009-01-01

    This research investigated variables that influenced hassles with the health care system among 320 informal caregivers of the chronically ill. Caregivers of the chronically ill usually have considerable contact with the health care system. The research shifted the focus from strain in the caregiver-recipient dyad to hassles with the health care…

  9. Creating relationships with persons with moderate to severe dementia.

    PubMed

    Ericsson, Iréne; Kjellström, Sofia; Hellström, Ingrid

    2013-01-01

    The study describes how relationships are created with persons with moderate to severe dementia. The material comprises 24 video sequences of Relational Time (RT) sessions, 24 interviews with persons with dementia and eight interviews with professional caregivers. The study method was Constructivist Grounded Theory. The categories of 'Assigning time', 'Establishing security and trust' and 'Communicating equality' were strategies for arriving at the core category, 'Opening up', which was the process that led to creating relationships. Both parties had to contribute to create a relationship; the professional caregiver controlled the process, but the person with dementia permitted the caregiver's overtures and opened up, thus making the relationship possible. Interpersonal relationships are significant to enhancing the well-being of persons with dementia. Small measures like RT that do not require major resources can open paths to creating relationships. PMID:24336663

  10. Creating relationships with persons with moderate to severe dementia

    PubMed Central

    Kjellström, Sofia; Hellström, Ingrid

    2013-01-01

    The study describes how relationships are created with persons with moderate to severe dementia. The material comprises 24 video sequences of Relational Time (RT) sessions, 24 interviews with persons with dementia and eight interviews with professional caregivers. The study method was Constructivist Grounded Theory. The categories of ‘Assigning time’, ‘Establishing security and trust’ and ‘Communicating equality’ were strategies for arriving at the core category, ‘Opening up’, which was the process that led to creating relationships. Both parties had to contribute to create a relationship; the professional caregiver controlled the process, but the person with dementia permitted the caregiver's overtures and opened up, thus making the relationship possible. Interpersonal relationships are significant to enhancing the well-being of persons with dementia. Small measures like RT that do not require major resources can open paths to creating relationships. PMID:24336663

  11. Risk of Cognitive and Functional Impairment in Spouses of People With Dementia: Evidence From the Health and Retirement Study.

    PubMed

    Pertl, Maria M; Lawlor, Brian A; Robertson, Ian H; Walsh, Cathal; Brennan, Sabina

    2015-12-01

    Caring for a spouse with dementia is a chronic stressor that may compromise caregivers' own cognitive functioning and capacity to provide adequate care. We examined whether having (i) a spouse with dementia and (ii) a spouse who requires assistance with activities of daily living predicted cognitive and functional impairments in respondents to the Health and Retirement Study (n = 7965). Respondents who had a spouse who requires care had poorer cognitive functioning, whereby this relationship was significantly stronger for male respondents. Having a spouse with dementia moderated the relationship between income and cognition and predicted caregiver functional impairment, though not when depression was controlled. Although we found no significant differences on any individual cognitive domains between 179 dementia caregivers and sociodemographically matched noncaregivers, our findings suggest that caregivers, especially men, and low-income individuals who have a spouse with dementia are more vulnerable to adverse cognitive outcomes. Targeting depression in spouses of people with dementia may help to prevent functional impairments.

  12. Sleep, Cognition and Dementia.

    PubMed

    Porter, Verna R; Buxton, William G; Avidan, Alon Y

    2015-12-01

    The older patient population is growing rapidly around the world and in the USA. Almost half of seniors over age 65 who live at home are dissatisfied with their sleep, and nearly two-thirds of those residing in nursing home facilities suffer from sleep disorders. Chronic and pervasive sleep complaints and disturbances are frequently associated with excessive daytime sleepiness and may result in impaired cognition, diminished intellect, poor memory, confusion, and psychomotor retardation all of which may be misinterpreted as dementia. The key sleep disorders impacting patients with dementia include insomnia, hypersomnolence, circadian rhythm misalignment, sleep disordered breathing, motor disturbances of sleep such as periodic leg movement disorder of sleep and restless leg syndrome, and parasomnias, mostly in the form of rapid eye movement (REM) sleep behavior disorder (RBD). RBD is a pre-clinical marker for a class of neurodegenerative diseases, the "synucleinopathies", and requires formal polysomnographic evaluation. Untreated sleep disorders may exacerbate cognitive and behavioral symptoms in patients with dementia and are a source of considerable stress for bed partners and family members. When left untreated, sleep disturbances may also increase the risk of injury at night, compromise health-related quality of life, and precipitate and accelerate social and economic burdens for caregivers. PMID:26478197

  13. Sleep, Cognition and Dementia.

    PubMed

    Porter, Verna R; Buxton, William G; Avidan, Alon Y

    2015-12-01

    The older patient population is growing rapidly around the world and in the USA. Almost half of seniors over age 65 who live at home are dissatisfied with their sleep, and nearly two-thirds of those residing in nursing home facilities suffer from sleep disorders. Chronic and pervasive sleep complaints and disturbances are frequently associated with excessive daytime sleepiness and may result in impaired cognition, diminished intellect, poor memory, confusion, and psychomotor retardation all of which may be misinterpreted as dementia. The key sleep disorders impacting patients with dementia include insomnia, hypersomnolence, circadian rhythm misalignment, sleep disordered breathing, motor disturbances of sleep such as periodic leg movement disorder of sleep and restless leg syndrome, and parasomnias, mostly in the form of rapid eye movement (REM) sleep behavior disorder (RBD). RBD is a pre-clinical marker for a class of neurodegenerative diseases, the "synucleinopathies", and requires formal polysomnographic evaluation. Untreated sleep disorders may exacerbate cognitive and behavioral symptoms in patients with dementia and are a source of considerable stress for bed partners and family members. When left untreated, sleep disturbances may also increase the risk of injury at night, compromise health-related quality of life, and precipitate and accelerate social and economic burdens for caregivers.

  14. Alzheimer's disease and other dementias in Canada.

    PubMed

    Wong, Suzy L; Gilmour, Heather; Ramage-Morin, Pamela L

    2016-05-18

    This article provides information on Alzheimer's disease and other dementias, using the 2010/2011 Canadian Community Health Survey, the 2011/2012 Survey of Neurological Conditions in Institutions in Canada, and the 2011 Survey on Living with Neurological Conditions in Canada. Among Canadians aged 45 or older, an estimated 0.8% in private households and 45% in long-term residential care facilities had a diagnosis of dementia. Prevalence rose with age. The vast majority of people with dementia in private households received assistance with medical care (81%), housework and home maintenance (83%), meal preparation (88%), emotional support (90%), transportation (92%), and managing care (92%). Among those receiving assistance, 85% relied, at least in part, on family, friends or neighbours. The primary caregiver tended to be a spouse (46%) or an adult child (44%), most of whom were daughters (71%). The majority of primary caregivers lived in the same household (83%) and provided daily care (86%). PMID:27192206

  15. The cost of caregiving: endocrine and immune implications in elderly and non elderly caregivers.

    PubMed

    Lovell, Brian; Wetherell, Mark A

    2011-05-01

    This review will provide an overview of literature that has linked caregiver stress with development and progression of disease, via interactions between the hypothalamic-pituitary-adrenal (HPA) axis and immune systems. The link between caregiver stress and dysregulation of key physiologic mediators has, in the main, focussed on elderly caregivers of spouses with degenerative illness, i.e., dementia. In these populations, aberrations of both endocrinological and immunologic mediators have been demonstrated. However, as a function of their advancing age, elderly populations experience natural dysregulation of the HPA axis and decline of immunologic efficacy. More recently, research has begun to assess whether caregiver stress exacts a similar physiologic toll on non elderly caregivers, i.e., parents of medically fragile children. Dysregulation of endocrinological and immunologic mediators have been observed in both populations, however, more consistently so in the elderly. The authors suggest that, by considering specific characteristics of the care recipient, i.e., type of impairment, and concomitant changes in the caregiving experience, i.e., caregiving intensity, as well as the role of dyadic support, researchers might be better poised to explain discrepant physiologic findings between elderly and non elderly caregivers and reconcile similar physiologic inconsistencies between different, non elderly populations.

  16. Reversible dementias

    PubMed Central

    Tripathi, Manjari; Vibha, Deepti

    2009-01-01

    In recent years, more attention has been given to the early diagnostic evaluation of patients with dementia which is essential to identify patients with cognitive symptoms who may have treatable conditions. Guidelines suggest that all patients presenting with dementia or cognitive symptoms should be evaluated with a range of laboratory tests, and with structural brain imaging with computed tomography (CT) or magnetic resonance imaging (MRI). While many of the disorders reported as ‘reversible dementias’ are conditions that may well be associated with cognitive or behavioral symptoms, these symptoms are not always sufficiently severe to fulfill the clinical criteria for dementia. Thus, while the etiology of a condition may be treatable it should not be assumed that the associated dementia is fully reversible. Potentially reversible dementias should be identified and treatment considered, even if the symptoms are not sufficiently severe to meet the clinical criteria for dementia, and even if partial or full reversal of the cognitive symptoms cannot be guaranteed. In the literature, the most frequently observed potentially reversible conditions identified in patients with cognitive impairment or dementia are depression, adverse effects of drugs, drug or alcohol abuse, space-occupying lesions, normal pressure hydrocephalus, and metabolic conditions land endocrinal conditions like hypothyroidism and nutritional conditions like vitamin B-12 deficiency. Depression is by far the most common of the potentially reversible conditions. The review, hence addresses the common causes of reversible dementia and the studies published so far. PMID:21416018

  17. [Sleep disorders in dementia patients].

    PubMed

    Savaskan, E

    2015-06-01

    Dementia is characterized by cognitive and also behavioral and psychological symptoms of dementia (BPSD). The most prominent BPSD are depression and apathy but sleep disorders also complicate the clinical course of dementia. These symptoms are a severe burden for patients and caregivers and are difficult to treat partly due to comorbidities. Common sleep disorders in dementia are insomnia, hypersomnia, circadian rhythm alterations and aberrant nocturnal motor behavior. Sleep duration and rapid eye movement (REM) sleep are reduced. The diagnostic assessment of sleep disorders should include an evaluation of the underlying risk factors and a detailed sleep history for which several assessment instruments are available. The therapy of sleep disorders of dementia is primarily nonpharmacological: sleep counseling, sleep hygiene regulation, relaxation and psychotherapy techniques are given priority. Pharmacological treatment often has severe side effects in this elderly, vulnerable population and can only be considered if other nonpharmacological options have been unsuccessful. The application of medication should be limited in time and dosage. The pharmacological therapeutic options are critically discussed in detail.

  18. Acculturation and depressive symptoms in latino caregivers of cognitively impaired older adults

    PubMed Central

    Meyer, Oanh L.; Geller, Sue; He, Emily; González, Hector M.; Hinton, Ladson

    2014-01-01

    Background Caregiving for older adults is a growing public health concern because of the negative psychological effects it has on caregivers. Despite the growing Latino caregiver population, little is known regarding how the effects of acculturation on caregiver depressive symptoms might vary by caregiver age. This study aimed to examine the relationship between language acculturation and depressive symptoms in Latino caregivers, and to test whether this relationship was moderated by age. Methods Ninety-four Latino caregivers of cognitively impaired older adults with and without dementia were identified through an ongoing epidemiological cohort study. Caregivers were interviewed in their homes, in either Spanish or English. A Poisson regression was used to analyze the caregiver characteristics associated with caregiver depressive symptoms. Results Language acculturation was positively associated with caregiver depressive symptoms, as was age, female gender, and being married or living with someone. Those with excellent or good health and who had spent more than one year caregiving had lower depressive symptoms. Finally, the positive relationship between language acculturation and depressive symptoms was increased in older caregivers. Conclusions Language acculturation appears to be a risk factor for depressive symptoms in Latino caregivers of cognitively impaired older adults. The relationship between language acculturation and depressive symptoms is complex such that caregiver age and health status further nuance this relationship. Future research should explore the independent and interactive effects of these variables on depressive symptoms. PMID:24717691

  19. Barriers to Implementation of Case Management for Patients With Dementia: A Systematic Mixed Studies Review

    PubMed Central

    Khanassov, Vladimir; Vedel, Isabelle; Pluye, Pierre

    2014-01-01

    PURPOSE Results of case management designed for patients with dementia and their caregivers in community-based primary health care (CBPHC) were inconsistent. Our objective was to identify the relationships between key outcomes of case management and barriers to implementation. METHODS We conducted a systematic mixed studies review (including quantitative and qualitative studies). Literature search was performed in MEDLINE, PsycINFO, Embase, and Cochrane Library (1995 up to August 2012). Case management intervention studies were used to assess clinical outcomes for patients, service use, caregiver outcomes, satisfaction, and cost-effectiveness. Qualitative studies were used to examine barriers to case management implementation. Patterns in the relationships between barriers to implementation and outcomes were identified using the configurational comparative method. The quality of studies was assessed using the Mixed Methods Appraisal Tool. RESULTS Forty-three studies were selected (31 quantitative and 12 qualitative). Case management had a limited positive effect on behavioral symptoms of dementia and length of hospital stay for patients and on burden and depression for informal caregivers. Interventions that addressed a greater number of barriers to implementation resulted in increased number of positive outcomes. Results suggested that high-intensity case management was necessary and sufficient to produce positive clinical outcomes for patients and to optimize service use. Effective communication within the CBPHC team was necessary and sufficient for positive outcomes for caregivers. CONCLUSIONS Clinicians and managers who implement case management in CBPHC should take into account high-intensity case management (small caseload, regular proactive patient follow-up, regular contact between case managers and family physicians) and effective communication between case managers and other CBPHC professionals and services. PMID:25354410

  20. Exemplary Care as a Mediator of the Effects of Caregiver Subjective Appraisal and Emotional Outcomes

    ERIC Educational Resources Information Center

    Harris, Grant M.; Durkin, Daniel W.; Allen, Rebecca S.; DeCoster, Jamie; Burgio, Louis D.

    2011-01-01

    Purpose: Exemplary care (EC) is a new construct encompassing care behaviors that warrants further study within stress process models of dementia caregiving. Previous research has examined EC within the context of cognitively intact older adult care recipients (CRs) and their caregivers (CGs). This study sought to expand our knowledge of quality of…

  1. Differences of Behavioral and Psychological Symptoms of Dementia in Disease Severity in Four Major Dementias

    PubMed Central

    Kazui, Hiroaki; Yoshiyama, Kenji; Kanemoto, Hideki; Suzuki, Yukiko; Sato, Shunsuke; Hashimoto, Mamoru; Ikeda, Manabu; Tanaka, Hibiki; Hatada, Yutaka; Matsushita, Masateru; Nishio, Yoshiyuki; Mori, Etsuro; Tanimukai, Satoshi; Komori, Kenjiro; Yoshida, Taku; Shimizu, Hideaki; Matsumoto, Teruhisa; Mori, Takaaki; Kashibayashi, Tetsuo; Yokoyama, Kazumasa; Shimomura, Tatsuo; Kabeshita, Yasunobu; Adachi, Hiroyoshi; Tanaka, Toshihisa

    2016-01-01

    Background/Aims Behavioral and psychological symptoms of dementia (BPSDs) negatively impact the prognosis of dementia patients and increase caregiver distress. The aims of this study were to clarify the differences of trajectories of 12 kinds of BPSDs by disease severity in four major dementias and to develop charts showing the frequency, severity, and associated caregiver distress (ACD) of BPSDs using the data of a Japan multicenter study (J-BIRD). Methods We gathered Neuropsychiatric Inventory (NPI) data of patients with Alzheimer’s disease (AD; n = 1091), dementia with Lewy bodies (DLB; n = 249), vascular dementia (VaD; n = 156), and frontotemporal lobar degeneration (FTLD; n = 102) collected during a 5-year period up to July 31, 2013 in seven centers for dementia in Japan. The NPI composite scores (frequency × severity) of 12 kinds of items were analyzed using a principal component analysis (PCA) in each dementia. The factor scores of the PCA were compared in each dementia by disease severity, which was determined with Clinical Dementia Rating (CDR). Results Significant increases with higher CDR scores were observed in 1) two of the three factor scores which were loaded for all items except euphoria in AD, 2) two of the four factor scores for apathy, aberrant motor behavior (AMB), sleep disturbances, agitation, irritability, disinhibition, and euphoria in DLB, and 3) one of the four factor scores for apathy, depression, anxiety, and sleep disturbances in VaD. However, no increases were observed in any of the five factor scores in FTLD. Conclusions As dementia progresses, several BPSDs become more severe, including 1) apathy and sleep disturbances in AD, DLB, and VaD, 2) all of the BPSDs except euphoria in AD, 3) AMB, agitation, irritability, disinhibition, and euphoria in DLB, and 4) depression and anxiety in VaD. Trajectories of BPSDs in FTLD were unclear. PMID:27536962

  2. Cancer patients caregivers comfort.

    PubMed

    de Araújo Lamino, Daniela; Turrini, Ruth Natalia Teresa; Kolcaba, Katharine

    2014-04-01

    Cross-sectional study, carried out at the outpatient clinic of an oncology hospital. Data were collected from 88 caregivers of cancer patients using the Caregiver General Comfort Questionnaire (GCQ) to assess the caregivers' comfort. The caregivers' GCQ score mean was 203.9; better comfort scores was associated with age, care time and current occupation; positive aspects of comfort were related to the fact that caregivers felt loved, to patients' physical and environmental comfort and to caregivers' spirituality. 203.9; better comfort scores were associated with age of the caregiver and current occupation; positive aspects of comfort were related to the fact that caregivers felt loved, to patients' physical and environmental comfort and to caregivers' spirituality. Caregivers, who didn't have a paid job or leisure's activities showed a worse GCQ. The GCQ scale can help to identify factors that interfere in caregivers' comfort, as well as needs that can be modified through health professionals' interventions.

  3. Vascular dementia

    MedlinePlus

    ... to dementia. Risk factors for VaD include: Diabetes Hardening of the arteries ( atherosclerosis ) High blood pressure ( hypertension ) ... Control conditions that increase the risk of hardening of the ... saturated fats and salt in the diet Treating related disorders

  4. Mixed Dementia

    MedlinePlus

    ... bodies , What Is Alzheimer's? NIA-Funded Memory & Aging Project Reveals Mixed Dementia Common Data from the first ... disease. For example, in the Memory and Aging Project study involving long-term cognitive assessments followed by ...

  5. [Informing of the diagnosis in dementia].

    PubMed

    Robles, María José; Cucurella, Eulàlia; Formiga, Francesc; Fort, Isabel; Rodríguez, Daniel; Barranco, Elena; Catena, Joan; Cubí, Dolors

    2011-01-01

    Dementia is a syndrome characterized by a progressive deterioration of cognitive functions, accompanied by psychiatric symptoms and behavioral disturbances that produce a progressive and irreversible disability. The way it should communicate the diagnosis of dementia is a key discussion point on which there is no unanimous agreement so far. The communicating of the diagnosis of dementia is a complex issue that affects not only, the patient but also to caregivers and health professionals who care and must conform to the ethical principles governing medical practice (autonomy, nonmaleficence, beneficence, and justice). Therefore, from the Dementia Working Group of the Catalan Geriatric Society (Grupo de Trabajo de Demencia de la Sociedad Catalana de Geriatría) arises the need to review the issue and propose a course of action for the disclosure of diagnosis.

  6. Love stories about caregiving and Alzheimer's disease: a performative methodology.

    PubMed

    McIntyre, Maura; Cole, Ardra

    2008-03-01

    Love Stories is a spoken-word performance created from data gathered from family caregivers about their experiences of caring for a loved one with Alzheimer's disease. We present the Love Stories script with an accompanying methodological commentary and put forward a framework of 'Loving Research' based on a model of dementia care proposed by the late Tom Kitwood. Kitwood proposed a five-part model of psychological needs of people with dementia centred on the fundamental and universal human yearning for love. Loving care brings to the person with dementia opportunities for attachment, identity, inclusion, occupation and comfort. Loving Research, we argue, brings these same qualities to readers, viewers and research participants.

  7. Clinical features and multidisciplinary approaches to dementia care

    PubMed Central

    Grand, Jacob HG; Caspar, Sienna; MacDonald, Stuart WS

    2011-01-01

    Dementia is a clinical syndrome of widespread progressive deterioration of cognitive abilities and normal daily functioning. These cognitive and behavioral impairments pose considerable challenges to individuals with dementia, along with their family members and caregivers. Four primary dementia classifications have been defined according to clinical and research criteria: 1) Alzheimer’s disease; 2) vascular dementias; 3) frontotemporal dementias; and 4) dementia with Lewy bodies/Parkinson’s disease dementia. The cumulative efforts of multidisciplinary healthcare teams have advanced our understanding of dementia beyond basic descriptions, towards a more complete elucidation of risk factors, clinical symptoms, and neuropathological correlates. The characterization of disease subtypes has facilitated targeted management strategies, advanced treatments, and symptomatic care for individuals affected by dementia. This review briefly summarizes the current state of knowledge and directions of dementia research and clinical practice. We provide a description of the risk factors, clinical presentation, and differential diagnosis of dementia. A summary of multidisciplinary team approaches to dementia care is outlined, including management strategies for the treatment of cognitive impairments, functional deficits, and behavioral and psychological symptoms of dementia. The needs of individuals with dementia are extensive, often requiring care beyond traditional bounds of medical practice, including pharmacologic and non-pharmacologic management interventions. Finally, advanced research on the early prodromal phase of dementia is reviewed, with a focus on change-point models, trajectories of cognitive change, and threshold models of pathological burden. Future research goals are outlined, with a call to action for social policy initiatives that promote preventive lifestyle behaviors, and healthcare programs that will support the growing number of individuals affected by

  8. Goals of care in advanced dementia: quality of life, dignity and comfort.

    PubMed

    Volicer, L

    2007-01-01

    provision of care. Van der Steen et al. present evidence that lower respiratory tract infection leads frequently but not always to functional decline. However, it is significant that the Dutch participants in this study were never hospitalized and always treated in a nursing home. Hospitalization leads to functional deterioration even in cognitively intact elderly individuals (4). In addition, treatment of lower respiratory infection is more effective when provided in a nursing home than when the resident is transferred to an acute care setting (5). It should also be considered that antibiotic treatment of lower respiratory tract infections in individuals with terminal dementia does not increase their comfort and lifespan (6). Dignity is an often invoked goal of care in dementia but it is often poorly defined and characterized. Holmerova et al. provide a detailed description of the concept of dignity and its application in dementia care. They also present two specific examples of problems encountered when individuals with advanced dementia are treated insensitively in an acute care setting. Dignity oriented care should treat everybody as an individual and provide care according to the goals of care determined before any crisis situation (7). Namaste Care is an example of care setting that respects individual's dignity until death; respecting "the spirit within". Tube feeding in individuals with advanced progressive dementia does not promote quality of life, dignity or comfort. Tube feeding deprives individuals from contact with the caregiver during hand feeding and from enjoyment of the taste of food. Tube feeding often requires use of restraints that decreases an individual's dignity and comfort. Despite the lack of beneficial effects and the burdens that the tube feeding imposes (8), it is still widely used in individuals with advanced dementia. Pang et al. compare the use of tube feeding in two different settings of dementia care, one in which tube feeding is not used

  9. End-of-life care in advanced dementia.

    PubMed

    Heron, Christopher R; Simmons, B Brent

    2014-10-01

    In the next 30 years, the average age of the population will continue to increase, as will the prevalence of dementia. The management of advanced dementia requires the careful orchestration of communication, prognostication, patient care, and caregiver education. Understanding the specific tools available to establish prognosis and guide medical management in these complicated medical patients greatly improves patient and caregiver satisfaction at the end of the patient's life. In caring for patients with advanced-stage dementia, providers should be knowledgeable regarding the terminal nature of the condition and its common comorbid diseases, and should be prepared to educate the patients' caregivers, building a structure of support for the patient's benefit and navigating the complexities of end-of-life care. PMID:25414940

  10. The Concept of Missing Incidents in Persons with Dementia.

    PubMed

    Rowe, Meredeth; Houston, Amy; Molinari, Victor; Bulat, Tatjana; Bowen, Mary Elizabeth; Spring, Heather; Mutolo, Sandra; McKenzie, Barbara

    2015-11-10

    Behavioral symptoms of dementia often present the greatest challenge for informal caregivers. One behavior, that is a constant concern for caregivers, is the person with dementia leaving a designated area such that their whereabouts become unknown to the caregiver or a missing incident. Based on an extensive literature review and published findings of their own research, members of the International Consortium on Wandering and Missing Incidents constructed a preliminary missing incidents model. Examining the evidence base, specific factors within each category of the model were further described, reviewed and modified until consensus was reached regarding the final model. The model begins to explain in particular the variety of antecedents that are related to missing incidents. The model presented in this paper is designed to be heuristic and may be used to stimulate discussion and the development of effective preventative and response strategies for missing incidents among persons with dementia.

  11. Consumption of Drugs and Nonpharmacological Therapies in Caregivers of Patients with Alzheimer's Disease: A Case-Control Study in Madrid

    PubMed Central

    Martín-García, Raquel; Martín-Avila, Guillermo; la Rubia-Marcos, María De; Maroto-Rodríguez, Raquel; Ortega-Angulo, Celia; Carreras Rodriguez, María Teresa; Abad Santos, Francisco; Gago Veiga, Ana Beatriz

    2016-01-01

    Background Dementia is a neurodegenerative disease whose prevalence is rising, and the need for assistance to patients becomes indispensable. The different types of dementia and their treatments have been widely studied; however, the health status of caregivers also requires our attention. Objective The aim of our research was to evaluate whether caregivers of patients with dementia consume more medications than the general population, indicating underlying pathologies. Methods A total of 91 caregivers of dementia patients were interviewed and their answers were compared with those from a control group of 48 people, taking into account demographic data, characteristics of patients and caregivers, pharmacological and nonpharmacological treatments and burden. Results Caregivers showed a significantly higher consumption of anxiolytics, antidepressants and antiplatelets (22.3, 13.2 and 11%, respectively) than the control group (14.6, 0 and 0%, respectively). Moreover, 45.1% of the caregivers used nonpharmacological therapies compared with 6.2% of the control group. There was a tendency to take more medications in those caregivers suffering from burden and those who had to take care of patients with behavioral changes. Conclusion Caregivers of dementia patients need more pharmacological and nonpharmacological therapies. They are a risk group that needs better care from the health system. PMID:27065471

  12. Forecasting the Incidence of Dementia and Dementia-Related Outpatient Visits With Google Trends: Evidence From Taiwan

    PubMed Central

    2015-01-01

    ). Conclusions Google Trends established a plausible relationship between search terms and new dementia cases and dementia-related outpatient visits in Taiwan. This data may allow the health care system in Taiwan to prepare for upcoming outpatient and dementia screening visits. In addition, the validated search term results can be used to provide caregivers with caregiving-related health, skills, and social welfare information by embedding dementia-related search keywords in relevant online articles. PMID:26586281

  13. Identity cues and dementia in nursing home intervention.

    PubMed

    Vézina, Aline; Robichaud, Line; Voyer, Philippe; Pelletier, Daniel

    2011-01-01

    This study examines the identity cues that family caregivers and healthcare personnel use with seniors living with dementia and living in nursing homes. The identity cues represent biographical knowledge used to stimulate the dementia sufferer, trigger signals and incite interaction. Our grounded approach hinges on three objectives: to identify and categorize identity cues; to document their uses; and to gain a better understanding of their effectiveness. We interviewed nine family caregivers and 12 healthcare workers. Qualitative data indicates that the participants use identity cues that evoke seniors' sociological, relational and individual characteristics. These identity cues play a central role in communication and constitute important information that the family caregivers can share with healthcare personnel. They sustain memory, facilitate care and reinforce seniors' self-value. These results help to define identity, foster a greater role for family caregivers, and constitute a sound basis for the implementation of personalized interventions.

  14. [Training and representation of dementia of workers in nursing homes].

    PubMed

    Sanchez, Stéphane; Gallin, Aurélie; Stefanuto, Muriel; Treffel, Sylvie; Antoine, Marc; Denormandie, Philippe

    2016-01-01

    Training could be a lever for improving the quality of care of residents with dementia in nursing homes by changing social representations. Beyond a simple assessment of acquired knowledge, a change of social representations could be indicative of a true appropriation of the content of the training. A study was carried out to assess the impact of training on nursing home caregivers' representations of dementia and Alzheimer's disease.

  15. [Training and representation of dementia of workers in nursing homes].

    PubMed

    Sanchez, Stéphane; Gallin, Aurélie; Stefanuto, Muriel; Treffel, Sylvie; Antoine, Marc; Denormandie, Philippe

    2016-01-01

    Training could be a lever for improving the quality of care of residents with dementia in nursing homes by changing social representations. Beyond a simple assessment of acquired knowledge, a change of social representations could be indicative of a true appropriation of the content of the training. A study was carried out to assess the impact of training on nursing home caregivers' representations of dementia and Alzheimer's disease. PMID:26976314

  16. Communicating with Patients Who Have Advanced Dementia: Training Nurse Aide Students

    ERIC Educational Resources Information Center

    Beer, Laura E.; Hutchinson, Susan R.; Skala-Cordes, Kristine K.

    2012-01-01

    The increase of dementia in older adults is changing how medical care is delivered. Recognizing symptoms of pain, managing behaviors, and providing quality of life for people who have advanced dementia requires a new skill set for caregivers. Researchers in this study targeted nurse aide students to test an educational module's effect on students'…

  17. Feasibility of Machine-Based Prompting to Assist Persons with Dementia

    ERIC Educational Resources Information Center

    Bewernitz, Megan Witte; Mann, William C.; Dasler, Patricia; Belchior, Patricia

    2009-01-01

    Nearly 14% of people over age 71 have some form of dementia, with prevalence increasing to nearly 40% of those over age 90. As dimentia progresses, it impacts a person's independent functions and can increase the burden on caregivers. The use of assistive devices can help individuals with dementia live more independently. However, older…

  18. [Application of music therapy for managing agitated behavior in older people with dementia].

    PubMed

    Sung, Huei-Chuan; Chang, Anne M; Abbey, Jennifer

    2006-10-01

    Older people with dementia may display negative emotions, memory problems, sleep disturbance, and agitated behavior. Among these symptoms, agitated behavior has been identified by families and nursing staff as the care problem that presents the greatest challenge. Several studies have found that music therapy reduced agitated behaviors in those with dementia and recommended use of music as an effective strategy in managing this behavioral problem. Music therapy represents a lower cost, effective care approach that nursing staff can easily learn and apply to those with dementia. Furthermore, reductions in agitated behavior in dementia patients that result from music therapy can also alleviate caregiver stress and burden of care, leading to improvements in the health and quality of life of both dementia patients and their caregivers. This paper aims to introduce the principles and application of music therapy in the management of agitated behavior in those with dementia.

  19. Gender differences in caregiving among family - caregivers of people with mental illnesses

    PubMed Central

    Sharma, Nidhi; Chakrabarti, Subho; Grover, Sandeep

    2016-01-01

    All over the world women are the predominant providers of informal care for family members with chronic medical conditions or disabilities, including the elderly and adults with mental illnesses. It has been suggested that there are several societal and cultural demands on women to adopt the role of a family-caregiver. Stress-coping theories propose that women are more likely to be exposed to caregiving stressors, and are likely to perceive, report and cope with these stressors differently from men. Many studies, which have examined gender differences among family-caregivers of people with mental illnesses, have concluded that women spend more time in providing care and carry out personal-care tasks more often than men. These studies have also found that women experience greater mental and physical strain, greater caregiver-burden, and higher levels of psychological distress while providing care. However, almost an equal number of studies have not found any differences between men and women on these aspects. This has led to the view that though there may be certain differences between male and female caregivers, most of these are small in magnitude and of doubtful clinical significance. Accordingly, caregiver-gender is thought to explain only a minor proportion of the variance in negative caregiving outcomes. A similar inconsistency characterizes the explanations provided for gender differences in caregiving such as role expectations, differences in stress, coping and social support, and response biases in reporting distress. Apart from the equivocal and inconsistent evidence, there are other problems in the literature on gender differences in caregiving. Most of the evidence has been derived from studies on caregivers of elderly people who either suffer from dementia or other physical conditions. Similar research on other mental illnesses such as schizophrenia or mood disorders is relatively scarce. With changing demographics and social norms men are increasingly

  20. Gender differences in caregiving among family - caregivers of people with mental illnesses.

    PubMed

    Sharma, Nidhi; Chakrabarti, Subho; Grover, Sandeep

    2016-03-22

    All over the world women are the predominant providers of informal care for family members with chronic medical conditions or disabilities, including the elderly and adults with mental illnesses. It has been suggested that there are several societal and cultural demands on women to adopt the role of a family-caregiver. Stress-coping theories propose that women are more likely to be exposed to caregiving stressors, and are likely to perceive, report and cope with these stressors differently from men. Many studies, which have examined gender differences among family-caregivers of people with mental illnesses, have concluded that women spend more time in providing care and carry out personal-care tasks more often than men. These studies have also found that women experience greater mental and physical strain, greater caregiver-burden, and higher levels of psychological distress while providing care. However, almost an equal number of studies have not found any differences between men and women on these aspects. This has led to the view that though there may be certain differences between male and female caregivers, most of these are small in magnitude and of doubtful clinical significance. Accordingly, caregiver-gender is thought to explain only a minor proportion of the variance in negative caregiving outcomes. A similar inconsistency characterizes the explanations provided for gender differences in caregiving such as role expectations, differences in stress, coping and social support, and response biases in reporting distress. Apart from the equivocal and inconsistent evidence, there are other problems in the literature on gender differences in caregiving. Most of the evidence has been derived from studies on caregivers of elderly people who either suffer from dementia or other physical conditions. Similar research on other mental illnesses such as schizophrenia or mood disorders is relatively scarce. With changing demographics and social norms men are increasingly

  1. Cross-cultural caregiving and the temporal dimension.

    PubMed

    Escandon, Socorro

    2013-11-01

    The caregiving research literature has explored and documented findings from psychological, clinical, and policy/program perspectives, but little is known regarding the contextual perspectives of caregiving. Temporal factors influence the structure and functioning of the caregiving family. The proposed paradigm adaptation extends a contextual perspective that addresses the exploration of the caregiving process as a temporal, dynamic, progressive process over time, in which decisions made by caregivers may not always be based on observable tasks but, nevertheless, may have important consequences. When cultures cross, attitudes and behaviors are modified, resulting from contact with a different set of values and beliefs. Cross-cultural research aims to explore these changes that take place over time. Future research should consider the inclusion of measures that assess the temporal aspect of caregiving and the acculturation considerations of family caregivers. These measures are especially needed because of the increased influence of international migration, economic globalization, and political conflicts in today's multicultural societies. PMID:24131414

  2. Ethical and practical challenges raised by an adult day program's caregiver satisfaction survey.

    PubMed

    Madeo, Anica; Feld, Sheila; Spencer, Beth

    2008-01-01

    A consumer satisfaction survey was completed by 21 caregivers to persons with dementia, who participated in Silver Club, a person-centered Adult Day Service program. Two themes emerged: caregivers expressed high program satisfaction based on joint benefits to members and caregivers, and they desired more information about the nature of the members' daily participation. These findings raised two important issues for program staff. First, Adult Day Service programs are often referred to and marketed as providing caregiver respite. This approach does not acknowledge caregivers' interest in programs that meet the needs of their loved ones, and may lead to reluctance to use programs that only stress the value of respite. Second, caregivers' desires for detailed feedback about members' program participation raise ethical and practical challenges within person-centered models of care. Collecting feedback from both participants and their caregivers can help monitor and improve services provided by person-centered Adult Day Service programs.

  3. Correlates of depression and burden for informal caregivers of patients in a geriatrics referral clinic.

    PubMed

    Drinka, T J; Smith, J C; Drinka, P J

    1987-06-01

    Caregiver burden has been associated with patient dementia. In this study we tested the hypothesis that caregiver burden and depression are related to patient cognitive impairment. We analyzed records of 127 elderly male patients from a Veterans hospital geriatrics referral clinic. The patients and their informal caregivers had been referred to the clinic because the complexity and multiplicity of their problems were beyond the treatment capability of other clinics. There was a high prevalence of dementia (73%) and depression (69%) in these patients according to Diagnostic and Statistical Manual (DSM-III) criteria. Quantitative measures of patient dementia and dependency in activities of daily living were not statistically associated with measures of caregiver depression or burden. In contrast, measures of patient depression were significantly correlated with measures of caregiver depression and burden. We hypothesize that caregivers of chronically ill, elderly men cope better with physical and cognitive incapacity than with affective symptoms. Because caregiver support is the most important factor in maintaining a disabled elder in the community, we suggest evaluating patients and caregivers for depression as part of standard practice in geriatric clinical settings. PMID:3553288

  4. Sources and determinants of social support for caregivers of persons with AIDS.

    PubMed

    Turner, H A; Pearlin, L I; Mullan, J T

    1998-06-01

    This study examines the determinants of social support among a sample of 642 caregivers of persons with AIDS living in San Francisco and Los Angeles. Respondents include both traditional family caregivers (mothers, spouses, other relatives) and non-traditional caregivers (friends, homosexual partners). Multiple regression analyses are conducted to assess the independent effects of six sets of variables on emotional and instrumental support: social-structural factors (age, education, employment status), caregiver's relationship to the person with AIDS, situational variables (caregiver's HIV status, patient's functional disability, interpersonal conflict), social network factors (contact with family, contact with friends, community integration), personal resources (mastery, caregiving competence), and use of formal community services (patient-directed services, caregiver-directed services). A number of factors and conditions appear to be relevant for caregiver support. For example, results indicate that network factors, including frequency of contact, conflict, and community integration, are importantly related to caregivers' perceptions of emotional support. There is also a trend suggesting lower emotional support among traditional family caregivers, relative to nonfamily caregivers, within gender categories. With respect to instrumental assistance with caregiving, factors that place greater demands and time constraints on caregivers, such as being employed and caring for an AIDS patient with greater functional limitations, appear to increase the level of informal instrumental support the caregiver receives. Partners and spouses, however, receive significantly lower instrumental assistance, independent of other factors. Implications of the findings are discussed.

  5. Sleep complaints in older women who are family caregivers.

    PubMed

    Wilcox, S; King, A C

    1999-05-01

    Providing care to a family member with dementia has significant psychological and physical consequences. Sleep quality is likely affected by caregiving, yet this domain has received surprisingly little empirical study. In this study, sleep complaints were examined in 90 older women who were family caregivers of adults with dementia. Caregivers reported more sleep complaints than similarly aged healthy adults on all seven components of the Pittsburgh Sleep Quality Index, and a similar level of sleep complaints to those of sleep-impaired women and depressives on 6 and 4 components, respectively. Sleep medication was used by 38% of caregivers in the past month. The most common sleep complaints that occurred at least weekly were waking up in the night or early morning (84%), bathroom needs (83%), and sleep onset difficulties (41%). Sixty percent of the sample reporting nighttime care recipient disruptions stated that these disruptions occurred 3 or more times per week. Caregiver relationship and care recipient diagnosis were unrelated to sleep complaints. Lower levels of education, less internalized anger, care recipient disruptions, and psychological distress were related to poorer overall sleep quality. Sleep complaints are a common yet understudied problem in family caregivers. PMID:10363041

  6. [Vascular dementia].

    PubMed

    Peters, N; Dichgans, M

    2010-10-01

    Vascular dementia (VaD) constitutes the second most frequent cause of dementia following Alzheimer's disease (AD). In contrast to AD, VaD encompasses a variety of conditions and dementia mechanisms including multiple and strategic infarcts, widespread white matter lesions and hemorrhages. The diagnosis of VaD is based on the patient history, the clinical evaluation and neuroimaging. Treatment of VaD should account for the underlying vascular condition and is directed towards the control of vascular risk factors and stroke prevention. The need for early diagnosis and preventive treatment has promoted the concept of vascular cognitive impairment (VCI). Harmonization standards for the description and study of VCI have recently been published. A common and distinct subtype of VaD is subcortical ischemic vascular dementia (SIVD) which is related to cerebral small vessel disease. SIVD is clinically characterized by impairment of executive functions and processing speed with relatively preserved memory. Cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL), a genetic variant of SIVD, represents an important differential diagnosis and may serve as a model of SIVD.

  7. Dementia beyond 2025: Knowledge and uncertainties.

    PubMed

    Kenigsberg, Paul-Ariel; Aquino, Jean-Pierre; Bérard, Alain; Gzil, Fabrice; Andrieu, Sandrine; Banerjee, Sube; Brémond, François; Buée, Luc; Cohen-Mansfield, Jiska; Mangialasche, Francesca; Platel, Hervé; Salmon, Eric; Robert, Philippe

    2016-01-01

    Given that there may well be no significant advances in drug development before 2025, prevention of dementia-Alzheimer's disease through the management of vascular and lifestyle-related risk factors may be a more realistic goal than treatment. Level of education and cognitive reserve assessment in neuropsychological testing deserve attention, as well as cultural, social, and economic aspects of caregiving. Assistive technologies for dementia care remain complex. Serious games are emerging as virtual educational and pleasurable tools, designed for individual and cooperative skill building. Public policies are likely to pursue improving awareness and understanding of dementia; providing good quality early diagnosis and intervention for all; improving quality of care from diagnosis to the end of life, using clinical and economic end points; delivering dementia strategies quicker, with an impact on more people. Dementia should remain presented as a stand-alone concept, distinct from frailty or loss of autonomy. The basic science of sensory impairment and social engagement in people with dementia needs to be developed. E-learning and serious games programs may enhance public and professional education. Faced with funding shortage, new professional dynamics and economic models may emerge through coordinated, flexible research networks. Psychosocial research could be viewed as an investment in quality of care, rather than an academic achievement in a few centers of excellence. This would help provide a competitive advantage to the best operators. Stemming from care needs, a logical, systems approach to dementia care environment through organizational, architectural, and psychosocial interventions may be developed, to help reduce symptoms in people with dementia and enhance quality of life. Dementia-friendly environments, culture, and domesticity are key factors for such interventions. PMID:25740575

  8. Dementia beyond 2025: Knowledge and uncertainties.

    PubMed

    Kenigsberg, Paul-Ariel; Aquino, Jean-Pierre; Bérard, Alain; Gzil, Fabrice; Andrieu, Sandrine; Banerjee, Sube; Brémond, François; Buée, Luc; Cohen-Mansfield, Jiska; Mangialasche, Francesca; Platel, Hervé; Salmon, Eric; Robert, Philippe

    2016-01-01

    Given that there may well be no significant advances in drug development before 2025, prevention of dementia-Alzheimer's disease through the management of vascular and lifestyle-related risk factors may be a more realistic goal than treatment. Level of education and cognitive reserve assessment in neuropsychological testing deserve attention, as well as cultural, social, and economic aspects of caregiving. Assistive technologies for dementia care remain complex. Serious games are emerging as virtual educational and pleasurable tools, designed for individual and cooperative skill building. Public policies are likely to pursue improving awareness and understanding of dementia; providing good quality early diagnosis and intervention for all; improving quality of care from diagnosis to the end of life, using clinical and economic end points; delivering dementia strategies quicker, with an impact on more people. Dementia should remain presented as a stand-alone concept, distinct from frailty or loss of autonomy. The basic science of sensory impairment and social engagement in people with dementia needs to be developed. E-learning and serious games programs may enhance public and professional education. Faced with funding shortage, new professional dynamics and economic models may emerge through coordinated, flexible research networks. Psychosocial research could be viewed as an investment in quality of care, rather than an academic achievement in a few centers of excellence. This would help provide a competitive advantage to the best operators. Stemming from care needs, a logical, systems approach to dementia care environment through organizational, architectural, and psychosocial interventions may be developed, to help reduce symptoms in people with dementia and enhance quality of life. Dementia-friendly environments, culture, and domesticity are key factors for such interventions.

  9. Caregiver Burden: Looking Beyond the Unidimensional Total Score.

    PubMed

    Lau, Sabrina; Chong, Mei Sian; Ali, Noorhazlina; Chan, Mark; Chua, Kia Chong; Lim, Wee Shiong

    2015-01-01

    The Zarit Burden Interview allows caregiver burden to be interpreted from a total score. However, recent studies propose a multidimensional Zarit Burden Interview model. This study aims to determine the agreement between unidimensional (UD) and multidimensional (MD) classification of burden, and differences in predictors among identified groups. We studied 165 dyads of dementia patients and primary caregivers. Caregivers were dichotomized into low-burden and high-burden groups based upon: (1) UD score using quartile cutoffs; and (2) MD model via exploratory cluster analysis. We compared UD versus MD 2×2 classification of burden using κ statistics. Caregivers not showing agreement by either definition were classified as "intermediate" burden. We performed binary logistic regression to ascertain differences in predictive factors. The 2 models showed moderate agreement (κ=0.72, P<0.01), yielding 104 low, 20 intermediate (UD "low burden"/MD "high burden"), and 41 high-burden caregivers. Neuropsychiatric symptoms [odds ratio (OR)=1.27, P=0.003], coresidence (OR=6.32, P=0.040), and decreased caregiving hours (OR=0.99, P=0.018) were associated with intermediate burden, whereas neuropsychiatric symptoms (OR=1.21, P=0.001) and adult children caregivers (OR=2.80, P=0.055) were associated with high burden. Our results highlight the differences between UD and MD classification of caregiver burden. Future studies should explore the significance of the noncongruent intermediate group and its predictors.

  10. Caregiver Action Network

    MedlinePlus

    ... MS, to adult children caring for parents with Alzheimer’s disease. CAN (the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across ...

  11. Family Caregiver Alliance

    MedlinePlus

    ... A Complex Web: Family Caregiving and Healthcare [Editor's note: This blog was originally posted on the the Atlas of Caregiving website on June ... 2016 Taking Care of SoMEone Else November 14, 2016 Grupo ...

  12. Caregivers program. Final rule.

    PubMed

    2015-01-01

    The Department of Veterans Affairs (VA) adopts, with changes, the interim final rule concerning VA's Program of Comprehensive Assistance for Family Caregivers. VA administers this program to provide certain medical, travel, training, and financial benefits to caregivers of certain veterans and servicemembers who were seriously injured during service on or after September 11, 2001. Also addressed in this rulemaking is the Program of General Caregiver Support Services that provides support services to caregivers of veterans from all eras who are enrolled in the VA health care system. Specifically, changes in this final rule include a requirement that Veterans be notified in writing should a Family Caregiver request revocation (to no longer be a Family Caregiver), an extension of the application timeframe from 30 days to 45 days for a Family Caregiver, and a change in the stipend calculation to ensure that Primary Family Caregivers do not experience unexpected decreases in stipend amounts from year to year. PMID:25581943

  13. Aggression in Persons with Dementia: Use of Nursing Theory to Guide Clinical Practice

    PubMed Central

    Dettmore, Diane; Kolanowski, Ann; Boustani, Malaz

    2009-01-01

    With approximately four million people in the United States today diagnosed with dementia, one of the most devastating problems faced by caregivers and patients is dealing with aggressive behavior. Aggression occurs in half of persons diagnosed with dementia and is associated with more rapid cognitive decline, increased risk of abuse, and caregiver burden. This paper uses the Need-driven Dementia-compromised Behavior (NDB) model to explain aggression and discusses therapeutic approaches to care that combines non-pharmacological and pharmacological interventions targeting both the management of aggression crisis and preventing its future recurrence. A clinical algorithm guided by the NBD model is provided for practitioners. PMID:19215808

  14. A Randomized Trial of a CAM Therapy for Stress Reduction in American Indian and Alaskan Native Family Caregivers

    ERIC Educational Resources Information Center

    Korn, Leslie; Logsdon, Rebecca G.; Polissar, Nayak L.; Gomez-Beloz, Alfredo; Waters, Tiffany; Ryser, Rudolph

    2009-01-01

    Purpose: Although it is widely recognized that caregivers of individuals with dementia experience elevated stress that places them at increased risk for health problems, little is known about how caregiving stress may be alleviated among underserved ethnic minority populations. The purpose of this study was to compare a complementary and…

  15. Psychological distress and mental health of Thai caregivers.

    PubMed

    Yiengprugsawan, Vasoontara; Seubsman S, Sam-Ang; Sleigh, Adrian C

    2012-08-01

    BACKGROUND: As the proportion of elderly people within a population increases there is an accompanying increase in the role of informal caregivers. Many studies on caregivers report negative health outcomes but very few have addressed positive aspects of caregiving. This study examines characteristics of Thai caregivers, the distribution of psychological distress and mental health among caregivers, and the association between caregiver status and psychological distress. METHODS: This report is based on an ongoing national cohort study of 60,569 Thai adults. Caregiving was common in the cohort, and in 2009 6.6% were full-time and 27.5% were part-time caregivers. Outcomes of the study were reported using an international standard Kessler 6 for psychological distress and a national Thai Mental Health Indicator. Determinants included age, sex, marital status, household income, work status and urban-rural residence. Frequency of social contacts was also included as explanatory variable. RESULTS: Among cohort members, 27.5% were part-time caregivers and 6.6% were full-time caregivers. Compared to non-caregivers, full-time caregivers tended to be older, to be married, more likely to be in the lowest household income group, to be unpaid family members, and to reside in rural areas. We noted the seeming contradiction that when compared to non-caregivers, the caregivers reported higher psychological distress but higher positive mental health (i.e., self-esteem and content with life), higher positive mental capacity (i.e., coping with crises), and higher positive mental quality (i.e., helping others). After adjusting for possible covariates, part-time and full-time caregivers were more likely to report high psychological distress (Adjusted Odds Ratios, AOR 1.33 and 1.78 among males and 1.32 and 1.45 among females). Less contact with colleagues was associated with high psychological distress both in males and females (AOR 1.36 and 1.33). Less contact with friends was also

  16. Transitions in Spousal Caregiving.

    ERIC Educational Resources Information Center

    Burton, Lynda C.; Zdaniuk, Bozena; Schulz, Richard; Jackson, Sharon; Hirsch, Calvin

    2003-01-01

    Describes transitions over 5 years among community-dwelling elderly spouses into and within caregiving roles and associated health outcomes. The trajectory of health outcomes associated with caregiving was generally downward. Those who transitioned to heavy caregiving had more symptoms of depression, and poorer self-reported health and health…

  17. Caregiving and Ethnicity.

    ERIC Educational Resources Information Center

    Glicksman, Allen

    This research examined the relationship between ethnicity and the psychological status and behavior of Jewish and non-Jewish caregivers in relation to the impaired elderly. It was hypothesized that Jewish caregivers would make significantly more use of formal services than non-Jewish (usually Christian) caregivers. Two separate data sets were…

  18. Parkinson's Disease Dementia

    MedlinePlus

    ... Is Dementia Types of Dementia Chronic Traumatic Encephalopathy (CTE) Creutzfeldt-Jakob Disease Dementia with Lewy Bodies Down ... Research Traumatic Brain Injury and Chronic Traumatic Encephalopathy (CTE) Awardees Year Researcher Study Name 2015 Jesse Mez ...

  19. Types of Dementia

    MedlinePlus

    ... Is Dementia Types of Dementia Chronic Traumatic Encephalopathy (CTE) Creutzfeldt-Jakob Disease Dementia with Lewy Bodies Down ... Research Traumatic Brain Injury and Chronic Traumatic Encephalopathy (CTE) Awardees Year Researcher Study Name 2015 Jesse Mez ...

  20. What to Ask: Dementia

    MedlinePlus

    ... What to Ask: Dementia Tools and Tips The memory loss and other changes seen in dementia can ... can ask your healthcare proffesional about dementia. Is memory loss a normal part of aging? If so, ...

  1. Neuropsychiatric symptoms of the elderly with Alzheimer's disease and the family caregivers' distress 1

    PubMed Central

    Storti, Luana Baldin; Quintino, Débora Teles; Silva, Natália Michelato; Kusumota, Luciana; Marques, Sueli

    2016-01-01

    ABSTRACT Objective: to analyze the relationship between the distress of the family caregiver and the presence of neuropsychiatric symptoms in elderly patients with Alzheimer's disease or mixed dementia. Method: a descriptive, cross-sectional study conducted in the Geriatric and Dementias Clinic of a general tertiary hospital, with 96 elderly people with Alzheimer's disease or mixed dementia and their family caregivers. Questionnaires to characterize the elderly and caregivers, and the Neuropsychiatric Inventory were used. Descriptive statistics and Pearson correlation test were performed. Results: 68.7% of the elderly were women, average age 80.8 years, 56.2% had Alzheimer's disease and 43.7%, mixed dementia. Among caregivers, 90.6% were women, average age 56, 70.8% took care of parents and 64.6% lived with the elderly. There was a strong (r = 0.82) and significant (p <0.01) correlation between the total score on the Neuropsychiatric Inventory and the total score on the Neuropsychiatric Inventory-Distress and strong (r = 0.80) and significant (p <0 01) correlation between the total score on the Neuropsychiatric Inventory Distress and the number of neuropsychiatric symptoms, i.e., the higher the number, frequency and severity of these symptoms in the elderly, the more intense is the caregiver distress. Conclusion: the presence of neuropsychiatric symptoms in the elderly was related to increased distress in caregivers. PMID:27533264

  2. Use and Adoption of an Assisted Cognition System to Support Therapies for People with Dementia

    PubMed Central

    Favela, Jesús

    2016-01-01

    The cognitive deficits in persons with dementia (PwD) can produce significant functional impairment from early stages. Although memory decline is most prominent, impairments in attention, orientation, language, reasoning, and executive functioning are also common. Dementia is also characterized by changes in personality and behavioral functioning that can be very challenging for caregivers and patients. This paper presents results on the use and adoption of an assisted cognition system to support occupational therapy to address psychological and behavioral symptoms of dementia. During 16 weeks, we conducted an in situ evaluation with two caregiver-PwD dyads to assess the adoption and effectiveness of the system to ameliorate challenging behaviors and reducing caregiver burden. Evaluation results indicate that intervention personalization and a touch-based interface encouraged the adoption of the system, helping reduce challenging behaviors in PwD and caregiver burden. PMID:27648106

  3. Use and Adoption of an Assisted Cognition System to Support Therapies for People with Dementia.

    PubMed

    Navarro, René F; Rodríguez, Marcela D; Favela, Jesús

    2016-01-01

    The cognitive deficits in persons with dementia (PwD) can produce significant functional impairment from early stages. Although memory decline is most prominent, impairments in attention, orientation, language, reasoning, and executive functioning are also common. Dementia is also characterized by changes in personality and behavioral functioning that can be very challenging for caregivers and patients. This paper presents results on the use and adoption of an assisted cognition system to support occupational therapy to address psychological and behavioral symptoms of dementia. During 16 weeks, we conducted an in situ evaluation with two caregiver-PwD dyads to assess the adoption and effectiveness of the system to ameliorate challenging behaviors and reducing caregiver burden. Evaluation results indicate that intervention personalization and a touch-based interface encouraged the adoption of the system, helping reduce challenging behaviors in PwD and caregiver burden. PMID:27648106

  4. Use and Adoption of an Assisted Cognition System to Support Therapies for People with Dementia

    PubMed Central

    Favela, Jesús

    2016-01-01

    The cognitive deficits in persons with dementia (PwD) can produce significant functional impairment from early stages. Although memory decline is most prominent, impairments in attention, orientation, language, reasoning, and executive functioning are also common. Dementia is also characterized by changes in personality and behavioral functioning that can be very challenging for caregivers and patients. This paper presents results on the use and adoption of an assisted cognition system to support occupational therapy to address psychological and behavioral symptoms of dementia. During 16 weeks, we conducted an in situ evaluation with two caregiver-PwD dyads to assess the adoption and effectiveness of the system to ameliorate challenging behaviors and reducing caregiver burden. Evaluation results indicate that intervention personalization and a touch-based interface encouraged the adoption of the system, helping reduce challenging behaviors in PwD and caregiver burden.

  5. Investigation of eating actions of people with dementia from the viewpoint of self-awareness.

    PubMed

    Yokoi, Teruo; Haraguchi, Eriko; Hashimoto, Tomohiro; Okamura, Hitoshi

    2012-06-01

    The key to improve the quality of life of people with dementia and caregivers is whether caregivers can understand the meanings of the puzzling words and deeds of people with dementia. Therefore, 2 of the authors observed and wrote down the puzzling words and deeds of 28 people with dementia in eating scenes, and these words and deeds were interpreted using our original model consisting of "theory of mind," "self-evaluation," and "self-consciousness." The results indicated that the bases for why caregivers perceive the words and deeds of people with dementia in eating scenes as puzzling are (1) those unable to pass the task of self-evaluation cannot evaluate their own eating situations in comparison with social standards, and the food culture collapses and (2) those unable to pass the task of self-consciousness cannot perceive through their senses. PMID:22739030

  6. Anosognosia and depression in patients with Alzheimer's dementia.

    PubMed

    Verhülsdonk, Sandra; Quack, Robin; Höft, Barbara; Lange-Asschenfeldt, Christian; Supprian, Tillmann

    2013-01-01

    Anosognosia refers to impaired awareness of patients to realize deficits related to a disorder and is a common symptom of dementia. Anosognosia has far-reaching consequences for diagnosis and treatment and is probably associated with unfavorable prognosis. This study examined the relationship between anosognosia and depression in patients with Alzheimer's dementia (AD). Assessment included interviews of patients and their caregivers. Depressive symptoms were evaluated with observer and self-rating instruments: the Geriatric Depression Scale (GDS), and the "mood" subscale of the Nurses Observation Scale for geriatric patients (NOSGER). Anosognosia was evaluated with the Anosognosia Questionnaire for Dementia (AQ-D). For the evaluation of behavioral and neuropsychological symptoms in dementia and the caregiver burden, the neuropsychiatric inventory (NPI) and the Cares of older People in Europe (COPE) Index were administered. A total of 47 patients were enrolled in the study at the department's geriatric psychiatry outpatient clinic. A considerable discrepancy was found between observer- and self-ratings of depressive symptoms. In 74.5% of the participants, caregiver ratings indicated secondary symptoms of depression as opposed to patient ratings. Thus, in AD, anosognosia may affect not only deficits in cognition and everyday functioning but also affective symptoms ("affective anosognosia"). Caregiver rating therefore is particularly important when assessing mood changes in AD patients.

  7. Prevalence and Predictors of Change in Adult-Child Primary Caregivers

    ERIC Educational Resources Information Center

    Szinovacz, Maximiliane E.; Davey, Adam

    2013-01-01

    Family caregiving research is increasingly contextual and dynamic, but few studies have examined prevalence and predictors of change in primary caregivers, those with the most frequent contact with healthcare professionals. We identified prevalence and predictors of 2-year change in primary adult-child caregivers. Data pooled from the 1992-2000…

  8. Religiosity and the expansion of caregiver stress.

    PubMed

    Leblanc, A J; Driscoll, A K; Pearlin, L I

    2004-09-01

    We present a stress process framework as a model for understanding how religiosity may influence the expansion of stress. Survey data from informal caregivers to a spouse with Alzheimer's disease or a related dementia (n = 200) were analyzed to observe the relationships among three variables: (1) care-related stress, (2) religiosity, and (3) depression. This sample, which has a mean age of 73 years, demonstrates high rates of self-described religiosity, church attendance and frequency of prayer. Using these criteria, women and racial/ethnic minority caregivers are the most religious. In a series of multivariate analyses, we found strong evidence to suggest that there is an expansion of care-related stressors leading to depression in this sample. Religiosity, as measured here, appears to be largely unrelated to stress and stress expansion. We found no evidence to suggest that it moderates stress expansion. However, these data do suggest that one stressor--feelings of role overload--is correlated with greater levels of self-perceived religiosity, which among caregivers who have health problems of their own is associated with greater depressive symptomatology. Thus, for a sub-sample of these caregivers, we find weak evidence of a mediation effect wherein one subjective, non-organizational dimension of religiosity is a conduit of the harmful effects of stress (rather than a suppressor). Results and data limitations are discussed in relation to better assessing the role of religiosity and spirituality in the experience of the stress process.

  9. Social Determinants of Dementia and Caregivers’ Perspectives in the Field Practice Villages of Rural Health Training Centre, Thiruvennainallur

    PubMed Central

    Gurukartick, J; Dongre, Amol R; Shah, Dharav

    2016-01-01

    Objectives: (1) To find out the prevalence of dementia in the study population and its social determinants. (2) To explore the family caregivers’ perceptions and their support needs. Materials and Methods - Study Setting: This study was undertaken in the field practice area of 55 villages of three Primary Health Centres in Villupuram District of Tamil Nadu. Study Design: An exploratory mixed-methods study design, where a qualitative method (key informant interview) was followed by a quantitative method (survey). Sample Size: A representative sample of 1300 respondents was selected by two-stage sampling. Analysis: Manual content analysis was done for qualitative data. Multiple logistic regression was performed on quantitative data. Results: The prevalence of dementia among study sample was found to be 3.1%. The determinants for dementia were age, sex, socioeconomic status, and previous involvement in family decision making and cardiovascular risk factors. The family caregivers strongly felt that caregiving interferes with their personal and professional life; they also felt that caregiving is an integral part of Indian culture, and the elderly prefer home-based care. Caregivers preferred government owned public health facility for medical care. All the responding caregivers strongly felt that they are not adequately trained in caregiving. Conclusions and Recommendations: Routine screening of elderly for early identification of dementia and its medical and social risk factors should be initiated in primary health care facility. Care of caregivers should be seen as an integral part of dementia care program. PMID:26962277

  10. Psychological Distress of Caregivers: The Mediator Effect of Caregiving Appraisal.

    ERIC Educational Resources Information Center

    Pot, A. M.; Deeg, D. J. H.; van Dyck, R.; Jonker, C.

    1998-01-01

    Examines whether the role of caregiving appraisal explains why stressors in the caregiving situation affect caregivers' psychological distress. Results show that for spouse caregivers, perceived pressure explains the association between their caregiving tasks and psychological distress. Results also show clear mediator effects of perceived…

  11. Driving Cessation and Dementia: Results of the Prospective Registry on Dementia in Austria (PRODEM)

    PubMed Central

    Seiler, Stephan; Schmidt, Helena; Lechner, Anita; Benke, Thomas; Sanin, Guenter; Ransmayr, Gerhard; Lehner, Riccarda; Dal-Bianco, Peter; Santer, Peter; Linortner, Patricia; Eggers, Christian; Haider, Bernhard; Uranues, Margarete; Marksteiner, Josef; Leblhuber, Friedrich; Kapeller, Peter; Bancher, Christian; Schmidt, Reinhold

    2012-01-01

    Objective To assess the influence of cognitive, functional and behavioral factors, co-morbidities as well as caregiver characteristics on driving cessation in dementia patients. Methods The study cohort consists of those 240 dementia cases of the ongoing prospective registry on dementia in Austria (PRODEM) who were former or current car-drivers (mean age 74.2 (±8.8) years, 39.6% females, 80.8% Alzheimer’s disease). Reasons for driving cessation were assessed with the patients’ caregivers. Standardized questionnaires were used to evaluate patient- and caregiver characteristics. Cognitive functioning was determined by Mini-Mental State Examination (MMSE), the CERAD neuropsychological test battery and Clinical Dementia Rating (CDR), activities of daily living (ADL) by the Disability Assessment for Dementia, behavior by the Neuropsychiatric Inventory (NPI) and caregiver burden by the Zarit burden scale. Results Among subjects who had ceased driving, 136 (93.8%) did so because of “Unacceptable risk” according to caregiver’s judgment. Car accidents and revocation of the driving license were responsible in 8 (5.5%) and 1(0.7%) participant, respectively. Female gender (OR 5.057; 95%CI 1.803–14.180; p = 0.002), constructional abilities (OR 0.611; 95%CI 0.445–0.839; p = 0.002) and impairment in Activities of Daily Living (OR 0.941; 95%CI 0.911–0.973; p<0.001) were the only significant and independent associates of driving cessation. In multivariate analysis none of the currently proposed screening tools for assessment of fitness to drive in elderly subjects including the MMSE and CDR were significantly associated with driving cessation. Conclusion The risk-estimate of caregivers, but not car accidents or revocation of the driving license determines if dementia patients cease driving. Female gender and increasing impairment in constructional abilities and ADL raise the probability for driving cessation. If any of these factors also relates to

  12. Paid caregiver motivation, work conditions, and falls among senior clients.

    PubMed

    Lindquist, Lee A; Tam, Karen; Friesema, Elisha; Martin, Gary J

    2012-01-01

    The purpose of this study was to determine the motivation of paid non-familial caregivers of seniors, understand more about their work conditions, and identify any links to negative outcomes among their senior clients. Ninety-eight paid caregivers (eighty-five female and thirteen male), recruited from multiple sites (i.e. senior centers, shopping malls, local parks, lobbies of senior apartments, caregiver agency meetings) completed face-to-face questionnaires and semi-structured interviews. We found that 60.7% of participants chose to become a caregiver because they enjoyed being with seniors while 31.7% were unable to obtain other work, and 8.2% stated it was a prerequisite to a different health related occupation. Caregivers stated that the most challenging conditions of their work were physical lifting (24.5%), behavioral and psychological symptoms of dementia (24.5%), senior depression/mood changes (18.4%), attachment with impending death (8.2%), missing injuries to client (5.1%), lack of sleep (4.1%), and lack of connection with outside world (3.1%). Caregivers who reported that the best part of their job was the salary, flexible hours, and ease of work were significantly more likely to have clients who fell and fractured a bone than those who enjoyed being with seniors (job characteristics, 62.5% vs. senior enjoyment, 25.6%; p<0.004). We concluded that in pursuing their occupation, paid caregivers are motivated commonly by their love of seniors and also by their lack of other job opportunities. Paid caregivers frequently face challenging work conditions. When seeking a caregiver for a senior, motivation of the caregiver should be considered when hiring.

  13. Care for the Caregivers: An Intrapersonal Journey.

    ERIC Educational Resources Information Center

    Boyer, Wanda A. R.

    2000-01-01

    Examines how professional early childhood caregivers care for themselves. Notes two basic human challenges: the need to make good contact with peers, parents, teachers, and others; and the need to achieve a good sense of self. Discusses four deterrents to meeting these challenges, and how to overcome them to achieve a healthy sense of balance and…

  14. Frontotemporal dementia: An updated overview.

    PubMed

    Mohandas, E; Rajmohan, V

    2009-01-01

    Frontotemporal dementia (FTD) is a progressive neurodegenerative syndrome occurring between 45 and 65 years. The syndrome is also called frontotemporal lobar degeneration (FTLD). However, FTLD refers to a larger group of disorders FTD being one of its subgroups. The other subgroups of FTLD are progressive nonfluent aphasia (PFNA), and semantic dementia (SD). FTLD is characterized by atrophy of prefrontal and anterior temporal cortices. FTD occurs in 5-15% of patients with dementia and it is the third most common degenerative dementia. FTD occurs with equal frequency in both sexes. The age of onset is usually between 45 and 65 years though it may range anywhere from 21 to 81 years. The usual course is one of progressive clinicopathological deterioration with mortality within 6-8 years. Unlike Alzheimer's disease (AD), this condition has a strong genetic basis and family history of FTD is seen in 40-50% of cases. FTD is a genetically complex disorder inherited as an autosomal dominant trait with high penetrance in majority of cases. Genetic linkage studies have revealed FTLD loci on chromosome 3p, 9, 9p, and 17q. The most prevalent genes are PGRN (progranulin) and MAPT (microtubule-associated protein tau), both located on chromosome 17q21. More than 15 different pathologies can underlie FTD and related disorders and it has four major types of pathological features: (1) microvacuolation without neuronal inclusions, (2) microvacuolation with ubiquitinated rounded intraneuronal inclusions and dystrophic neurites FTLD-ubiquitinated (FTLD-U), (3) transcortical gliosis with tau-reactive rounded intraneuronal inclusions, (4) microvacuolation and taupositive neurofibrillary tangles. Behavior changes are the most common initial symptom of FTD (62%), whereas speech and language problems are most common in NFPA (100%) and SD (58%). There are no approved drugs for the management of FTD and trials are needed to find effective agents. Non-pharmacological treatment and caregiver

  15. Global music approach to persons with dementia: evidence and practice.

    PubMed

    Raglio, Alfredo; Filippi, Stefania; Bellandi, Daniele; Stramba-Badiale, Marco

    2014-01-01

    Music is an important resource for achieving psychological, cognitive, and social goals in the field of dementia. This paper describes the different types of evidence-based music interventions that can be found in literature and proposes a structured intervention model (global music approach to persons with dementia, GMA-D). The literature concerning music and dementia was considered and analyzed. The reported studies included more recent studies and/or studies with relevant scientific characteristics. From this background, a global music approach was proposed using music and sound-music elements according to the needs, clinical characteristics, and therapeutic-rehabilitation goals that emerge in the care of persons with dementia. From the literature analysis the following evidence-based interventions emerged: active music therapy (psychological and rehabilitative approaches), active music therapy with family caregivers and persons with dementia, music-based interventions, caregivers singing, individualized listening to music, and background music. Characteristics of each type of intervention are described and discussed. Standardizing the operational methods and evaluation of the single activities and a joint practice can contribute to achieve the validation of the application model. The proposed model can be considered a low-cost nonpharmacological intervention and a therapeutic-rehabilitation method for the reduction of behavioral disturbances, for stimulation of cognitive functions, and for increasing the overall quality of life of persons with dementia. PMID:25336931

  16. Global music approach to persons with dementia: evidence and practice

    PubMed Central

    Raglio, Alfredo; Filippi, Stefania; Bellandi, Daniele; Stramba-Badiale, Marco

    2014-01-01

    Music is an important resource for achieving psychological, cognitive, and social goals in the field of dementia. This paper describes the different types of evidence-based music interventions that can be found in literature and proposes a structured intervention model (global music approach to persons with dementia, GMA-D). The literature concerning music and dementia was considered and analyzed. The reported studies included more recent studies and/or studies with relevant scientific characteristics. From this background, a global music approach was proposed using music and sound–music elements according to the needs, clinical characteristics, and therapeutic–rehabilitation goals that emerge in the care of persons with dementia. From the literature analysis the following evidence-based interventions emerged: active music therapy (psychological and rehabilitative approaches), active music therapy with family caregivers and persons with dementia, music-based interventions, caregivers singing, individualized listening to music, and background music. Characteristics of each type of intervention are described and discussed. Standardizing the operational methods and evaluation of the single activities and a joint practice can contribute to achieve the validation of the application model. The proposed model can be considered a low-cost nonpharmacological intervention and a therapeutic–rehabilitation method for the reduction of behavioral disturbances, for stimulation of cognitive functions, and for increasing the overall quality of life of persons with dementia. PMID:25336931

  17. Global music approach to persons with dementia: evidence and practice.

    PubMed

    Raglio, Alfredo; Filippi, Stefania; Bellandi, Daniele; Stramba-Badiale, Marco

    2014-01-01

    Music is an important resource for achieving psychological, cognitive, and social goals in the field of dementia. This paper describes the different types of evidence-based music interventions that can be found in literature and proposes a structured intervention model (global music approach to persons with dementia, GMA-D). The literature concerning music and dementia was considered and analyzed. The reported studies included more recent studies and/or studies with relevant scientific characteristics. From this background, a global music approach was proposed using music and sound-music elements according to the needs, clinical characteristics, and therapeutic-rehabilitation goals that emerge in the care of persons with dementia. From the literature analysis the following evidence-based interventions emerged: active music therapy (psychological and rehabilitative approaches), active music therapy with family caregivers and persons with dementia, music-based interventions, caregivers singing, individualized listening to music, and background music. Characteristics of each type of intervention are described and discussed. Standardizing the operational methods and evaluation of the single activities and a joint practice can contribute to achieve the validation of the application model. The proposed model can be considered a low-cost nonpharmacological intervention and a therapeutic-rehabilitation method for the reduction of behavioral disturbances, for stimulation of cognitive functions, and for increasing the overall quality of life of persons with dementia.

  18. Cybersupport: empowering asthma caregivers.

    PubMed

    Sullivan, Claire E

    2008-01-01

    In the United States, an estimated 6.5 million children have asthma (Akinbami, 2005). Due to the chronic and unpredictable nature of asthma, the condition places excessive demands on the primary caregiver. The complexity of asthma management has required parents to take increased responsibility for the assessment and treatment of their child's asthma (Dickinson & Dignam, 2002). Many families are turning to the Internet for information and support. The purpose of this study was to gain insight into the "lived" experiences of an online asthma caregivers support group. Archived messages posted to an online discussion list were analyzed using phenomenological thematic analysis. Five themes emerged providing insight into the meaning of caregiving and the provision of social support. Online support narratives provide a unique way to gain insight and understanding of the experiences of mother's enacting the caregiver role. Understanding the everyday lives of asthma caregivers can help nurses and other health care providers better meet caregiver needs.

  19. Improving Doctor/Caregiver Communication

    MedlinePlus

    ... Month Friend: Living Independently Group Improving Doctor/ Caregiver Communications Helpful Ideas for Family Caregivers From NFCA There is much to be gained by improving communications between family caregivers and health care professionals, especially ...

  20. Frontotemporal dementia

    PubMed Central

    2014-01-01

    Objective: Describe the relationships between the clinical, neuropsychological, and imaging findings from a group of patients diagnosed with frontotemporal dementia (FTD). Methods: The clinical histories, cognitive tests, and structural and perfusion brain images of 21 patients of the Psychiatric Hospital Universitario del Valle, Cali, Colombia, were reviewed. Results: The average age was 59.8 years; the average time for the evolution of disease symptoms was 2.7 years; the most common variant was the behavioral variant; the most common alteration shown through nuclear magnetic resonance (NMR) was frontotemporal atrophy, while the most common alteration shown through single-photon emission computed tomography (SPECT) was frontotemporal hypoperfusion. The most significant result was the normal performance of 61.9% of patients in praxis exams, which was associated with alterations in temporoparietal perfusion in the SPECT images (p <0.02). Neither the mini-mental state evaluation nor the Clock Drawing Executive Test (CLOX) served as screening tests. PMID:25386038

  1. The experience of sons caring for a parent with dementia.

    PubMed

    McDonnell, Eilis; Ryan, Assumpta A

    2014-11-01

    This study explored the experiences of sons caring for a parent with dementia. Individual, semi-structured interviews were conducted with a purposeful sample of sons (n = 13) in a rural part of Ireland. Interviews were audiotaped, transcribed verbatim and analysed for common themes. The key themes that emerged were 'the parental bond', 'a binding role', 'coordinating care and support' and a 'getting on with it' approach to care. The study highlighted the commitment of sons to their caregiving role and the strong sense of duty that motivated them to provide care. The findings suggested that while many aspects of the caregiving experience such as lack of information and support are gender neutral, there are differences in the caregiving experiences of men and women in how they view their relationship with their parent and in the management of their caregiving role that merit further investigation. PMID:24339083

  2. Symptoms at Onset in First Episode Schizophrenia: Caregivers Perspectives

    PubMed Central

    Tharoor, Hema; Ganesh, Aarthi

    2015-01-01

    Background: Early recognition of symptoms is important in the management of psychosis. Caregivers understanding and attribution of symptoms plays a major role in treatment selection. Aim: The aim was to identify the various symptoms cluster recognized by caregivers at illness onset in first episode schizophrenia. Subjects and Methods: In a cross-sectional study 40 key caregivers of patients with first episode of Schizophrenia (International Classification of Diseases-10) attending the outpatient services of Schizophrenia Research Foundation were recruited. Caregivers were assessed using a questionnaire adapted from the Psychiatric and Personal History Schedule. Statistical Analysis: Principal component (PCP) analysis. Results: Caregivers were predominantly women. Parents (58%), siblings (18%), spouse (12%), and children (12%) formed the sample. The caregiver easily recognized depressive symptoms. An analysis was done to analyze symptom data rated on the caregiver questionnaire indicated a four-factor solution. PCP analysis produced a clear depressive, anxious, irritable, and vegetative factor (Eigenvalue >0.05). Caregivers (40%) attributed present lifestyle as causality. The first contact of help in almost half of the sample (45%) was to a psychiatric facility. Conclusion: Caregiver's perception about mental illness and ability to identify the four factors has important treatment implications. Studying patterns of help seeking may be a useful strategy in early intervention programs. PMID:26702170

  3. Long Distance Caregiving

    MedlinePlus

    ... life, working women with their own major family responsibilities remain our primary caregivers, more and more men are becoming caregivers. However, anyone anywhere can give care—regardless of gender, income, age, social status, and employment. No matter how great the ...

  4. Influencing Support for Caregivers

    ERIC Educational Resources Information Center

    Raphael, Carol; Cornwell, Jennifer Lin

    2008-01-01

    This article describes the challenges faced by providers in integrating and effectively using caregivers and suggests longer-range public policy approaches to address these challenges and spur system changes that respond to caregivers' needs and help them manage the demands placed upon them. A policy agenda for incorporating and supporting…

  5. Translating Training in the NYU Caregiver Intervention in Australia: Maintaining Fidelity and Meeting Graduate Standards in an Online Continuing Professional Education Setting

    ERIC Educational Resources Information Center

    Scott, Theresa L.; Mittelman, Mary S.; Beattie, Elizabeth; Parker, Deborah; Neville, Christine

    2015-01-01

    The aim of this study was to develop an Internet-based self-directed training program for Australian healthcare workers to facilitate learning and competence in delivery of a proven intervention for caregivers of people with dementia: The New York University Caregiver Intervention (NYUCI). The NYUCI is a nonpharmacological, multicomponent…

  6. The Neuropsychiatric Inventory: assessing psychopathology in dementia patients.

    PubMed

    Cummings, J L

    1997-05-01

    The Neuropsychiatric Inventory (NPI) was developed to assess psychopathology in dementia patients. It evaluates 12 neuropsychiatric disturbances common in dementia: delusions, hallucinations, agitation, dysphoria, anxiety, apathy, irritability, euphoria, disinhibition, aberrant motor behavior, night-time behavior disturbances, and appetite and eating abnormalities. The severity and frequency of each neuropsychiatric symptom are rated on the basis of scripted questions administered to the patient's caregiver. The NPI also assesses the amount of caregiver distress engendered by each of the neuropsychiatric disorders. A total NPI score and a total caregiver distress score are calculated, in addition to the scores for the individual symptom domains. Content validity, concurrent validity, inter-rater reliability, and test-retest reliability of the NPI are established. Different neurologic disorders have characteristic neuropsychiatric manifestations and distinctive NPI profiles. The NPI is sensitive to treatment effects and has demonstrated the amelioration of behavioral symptoms in Alzheimer's disease by cholinergic agents. The NPI is a useful instrument for characterizing the psychopathology of dementia syndromes, investigating the neurobiology of brain disorders with neuropsychiatric manifestations, distinguishing among different dementia syndromes, and assessing the efficacy of treatment.

  7. Recalled attributes of parents with Alzheimer's disease: relevance for caregiving

    PubMed Central

    Chiriboga, David A.; Jang, Yuri; Molinari, Victor; Kim, Giyeon; Ko, Jung Eun

    2014-01-01

    Health psychology has long been involved in studies of factors that lead to more effective caregiving. Drawing on the theory of distributive justice, the underlying hypothesis of this paper was that perceptions of what a demented parent was like, prior to becoming ill, influence an adult child caregiver's provision of care, as well as the caregiver's own well-being. A secondary question dealt with the nature of retrospective ratings by caregiver informants. The sample consisted of triads of two adult children (N = 385) and a parent (N = 201) diagnosed with Alzheimer's disease, although in a few instances only one adult child was interviewed. Both retrospective and current ratings of the parent were made by caregivers, who were administered a semantic differential instrument twice over a 10-month period. Comparison of ratings from first and second interview waves suggested that perceptions of what a parent was like, prior to the onset of dementia, were more stable over time than perceptions of what the parent was currently like, at each interview. Ratings of premorbid attributes were more strongly related to ratings of the present for those parents who displayed the least evidence of cognitive decline. Regression analyses supported the hypothesized relationship between adult children's perceptions and both provision of care and well-being variables. Results have implications for projections of caregiver burden and for placement into long-term care. PMID:25750833

  8. Diabetes, Dementia and Hypoglycemia.

    PubMed

    Meneilly, Graydon S; Tessier, Daniel M

    2016-02-01

    We are experiencing an epidemic of both diabetes and dementia among older adults in this country. The risk for dementia appears to be increased in patients with diabetes, and patients with dementia and diabetes appear to be at greater risk for severe hypoglycemia. In addition, there may be an increased risk for developing dementia by older patients with diabetes who have had episodes of severe hypoglycemia, although this issue is controversial. In this article, we review the factors that contribute to the increased risk for dementia in older adults with diabetes and outline the complex relationships between hypoglycemia and dementia.

  9. Rest-Activity and Behavioral Disruption in a Patient with Frontotemporal Dementia

    PubMed Central

    Merrilees, J.; Hubbard, E.; Mastick, J.; Miller, B.L.; Dowling, G.A.

    2009-01-01

    The neurological deterioration in dementia is associated with disturbances in circadian rhythms and rest-activity patterns. These disruptions have been documented in Alzheimer's disease (AD) and dementia with Lewy bodies but little is known about rest-activity patterns in patients with frontotemporal dementia (FTD). We report longitudinal (2 year) actigraphy results for a patient who met diagnostic criteria for FTD and his family caregiver. The subject and his family caregiver wore Actiwatches continuously for 2-weeks at 1-year intervals. The findings suggest that with disease progression there is worsening in multiple areas of rest-activity measures for the patient and a negative impact on sleep quality for the family caregiver. PMID:19736599

  10. Testing family-centered, function-focused care in hospitalized persons with dementia

    PubMed Central

    Boltz, Marie; Chippendale, Tracy; Resnick, Barbara; Galvin, James E

    2015-01-01

    Summary Aim Hospital-acquired disability causes decreased quality of life for patients with dementia and family caregivers, and increased societal costs. Materials & methods A comparative, repeated measures study tested the feasibility and preliminary efficacy of the family-centered, function-focused care intervention (Fam-FFC) in dyads of hospitalized, medical patients with dementia and family caregivers (FCGs). Results The intervention group demonstrated better activities of daily living and walking performance, and less severity/duration of delirium and hospital readmissions, but no significant differences in gait/balance. FCGs showed increased preparedness for caregiving and less anxiety but no significant differences in depression, strain and mutuality. Conclusion Fam-FFC presents a possible pathway to meeting the Triple Aim of improved patient care, improved patient health and reduced costs for persons with dementia. PMID:26107319

  11. Family Caregiving or Caregiving Alone: Who Helps the Helper?

    ERIC Educational Resources Information Center

    Sims-Gould, Joanie; Martin-Matthews, Anne

    2007-01-01

    This study advances the understanding of family caregiving by examining the relationship between adult children caregivers and their helpers. Specifically, it focuses on examining "who helps whom" and extends analyses beyond the dyadic focus of caregiving in later life. The focus on helping and caregiving addresses the variety of contributions and…

  12. [Prevention of dementia].

    PubMed

    Urakami, Katsuya

    2016-03-01

    The dementia prevention consists of three steps, primary prevention of dementia is to prevent from normal and mild cognitive impairment to dementia, secondary prevention is early detection and early treatment of dementia, and tertiary prevention is three stages of progress prevention of dementia. Primary prevention of dementia had been considered impossible until recently, but potential scientific evidence has been shown recently. The fact that 4.62 million people are person with dementia and 400 million people are person with mild cognitive impairment are considered to be urgent problem and we must intend to perform dementia prevention from primary to tertiary prevention thoroughly. We perform dementia screening using touch panel type computer and we recommend person with mild cognitive impairment to join dementia prevention classroom. Therefore, we can prevent progression from mild cognitive impairment to dementia (primary prevention). Early diagnosis and introduction to the specialized medical institution are needed if you find early stage of dementia and treat early (secondary prevention). To prevent progression by the appropriate drug treatment and care for dementia is required (tertiary prevention).

  13. Assessing vascular dementia.

    PubMed

    Forette, F; Rigaud, A S; Morin, M; Gisselbrecht, M; Bert, P

    1995-10-01

    Vascular dementia is the most common cause of dementia in the elderly after Alzheimer's disease. Many forms of vascular dementia have been described: multi-infarct dementia, lacunar dementia, Binswanger's subcortical encephalopathy, cerebral amyloid angiopathy, white matter lesions associated with dementias, single infarct dementia, dementia linked to hypoperfusion and haemorrhagic dementia. The difficulty of diagnosing vascular dementia must not be underestimated and an international consensus is needed for epidemiological studies. The NINCDS-AIREN group has recently published diagnostic criteria. The State of California Alzheimer's Disease Diagnostic and Treatment Centers also proposed some which differ from the NINCDS-AIREN criteria in considering only ischaemic vascular dementia and not other mechanisms such as haemorrhagic or hypoxic lesions. Most studies stress hypertension as the most powerful risk factor for all forms of vascular dementia. The incidence rate ranges from 7 per 1000 person-years in normal volunteers to 16 per 1000 person-years in hypertensive patients. No therapeutic attempt has influenced the course of the disease once the dementing condition is established. The only effective approach is preventive treatment. The objective of the SYST-EUR Vascular Dementia project is to confirm that the treatment of isolated systolic hypertension is able to reduce its incidence.

  14. Sleep Disturbances in Frontotemporal Dementia.

    PubMed

    McCarter, Stuart J; St Louis, Erik K; Boeve, Bradley F

    2016-09-01

    Sleep disorders appear to be frequent comorbidities in patients with frontotemporal dementia (FTD). Insomnia and excessive daytime sleepiness commonly occur in patients with FTD and significantly contribute to caregiver burden and burnout. Sleep is severely fragmented in FTD patients, likely secondary to behavioral disturbances, other primary sleep disorders such as sleep disordered breathing and restless leg syndrome, and neurodegeneration of nuclei involved in sleep and wakefulness. Treatment of primary sleep disorders may improve excessive daytime sleepiness and sleep quality and may improve daytime cognitive functioning. Rapid eye movement (REM) sleep behavior disorder is rare in FTD and may be confused with excessive nocturnal activity due to disturbed circadian rhythm. The relationship between FTD, sleep quality, and sleep disorders requires further study to better understand the contribution of disturbed sleep to daytime neurocognitive functioning and quality of life in FTD. Further, future studies should focus on comparing sleep disturbances between different FTD syndromes, especially behavioral variant FTD and primary progressive aphasia. Comorbid sleep disorders should be promptly sought and treated in patients with FTD to improve patient and caregiver quality of life. PMID:27485946

  15. More caregiving, less working: caregiving roles and gender difference.

    PubMed

    Lee, Yeonjung; Tang, Fengyan

    2015-06-01

    This study examined the relationship of caregiving roles to labor force participation using the nationally representative data from the Health and Retirement Study. The sample was composed of men and women aged 50 to 61 years (N = 5,119). Caregiving roles included caregiving for spouse, parents, and grandchildren; a summary of three caregiving roles was used to indicate multiple caregiving roles. Bivariate analysis using chi-square and t tests and binary logistic regression models were applied. Results show that women caregivers for parents and/or grandchildren were less likely to be in the labor force than non-caregivers and that caregiving responsibility was not related to labor force participation for the sample of men. Findings have implication for supporting family caregivers, especially women, to balance work and caregiving commitments.

  16. Sexuality and Dementia

    MedlinePlus

    ... Search About FCA Mission and Values Programs and Services Overview Board and Staff Grants and Awards FCA Donors FCA History Jobs at FCA Caregiver Education Health Conditions Caregiving Issues and Strategies Fact and Tip Sheets Classes & Events FCA Webinars ...

  17. Lewy Body Dementia Association

    MedlinePlus

    ... promoting scientific advances. Featured LBD Stories & Tributes Dad's Dementia Journey It's been years since my father passed ... I received an email from the Lewy Body Dementia Association about a benefit... Read Story The Lewy ...

  18. Lewy Body Dementia Diagnosis

    MedlinePlus

    ... individuals, it may also be due to the natural course of the disease. All Rights Reserved Lewy Body Dementia Association, Inc. 912 Killian Hill Road S.W., Lilburn, GA 30047 © 2016 Lewy Body Dementia Association, Inc. Connect ...

  19. Effects of Video-Feedback Interaction Training for Professional Caregivers of Children and Adults with Visual and Intellectual Disabilities

    ERIC Educational Resources Information Center

    Damen, S.; Kef, S.; Worm, M.; Janssen, M. J.; Schuengel, C.

    2011-01-01

    Background: Individuals in group homes may experience poor quality of social interaction with their professional caregivers, limiting their quality of life. The video-based Contact programme may help caregivers to improve their interaction with clients. Method: Seventy-two caregivers of 12 individuals with visual and intellectual disabilities…

  20. [Daily life disability associated with dementia].

    PubMed

    Asada, Takashi

    2013-01-01

    Daily life disability associated with dementia including Alzheimer disease involves a series of difficulties in performing daily tasks. People with this disability have difficulty in being active individually, participating in society, and carrying out daily tasks. Evidence suggests that its causes are lesions in specific areas of the brain. For example, focal lesions appear to be specifically correlated with symptoms of apraxia and agnosia. In general, cognitive decline in the course of dementing illnesses worsens as brain lesions expand. This may be accompanied by the impairment of other organs. However, brain lesions appear to be the overall cause of daily life disability associated with dementia. There are three basic measures that can be taken in response to daily life disability : first, analysis of normal daily life activities ; next, the observation of how the activities of people with dementia deviate from the normal pattern ; and finally, collecting information on caregivers' effective practices to appropriately respond to these deviations. Care for daily life disability associated with dementia should aim to maximize the performance of people with dementia based on their existing abilities. To do this, it is important to recognize disruptions to the normal flow of activity, and understand clues pointing to the causes of these disruptions. In order to examine the daily life disability associated with dementia, we conducted preliminary experiments on the background brain activity. For this purpose, capsaicin derived from red pepper was used to stimulate taste bud receptors on the tongue. During this physiological process, we examined the response within the brain, and observed activity in specific brain regions. For further studies on the background of the disability, we will use fMRI and magnetoencephalography.

  1. Factors Associated with Unmet Needs among African-American Dementia Care Providers

    PubMed Central

    Desin, PJ; Caban-Holt, AM; Abner, EL; Van Eldik, LJ; Schmitt, FA

    2016-01-01

    Racial and ethnic minorities currently comprise 20% of the U.S. population; in 2050, this figure is expected to rise to 42%. As a result, Alzheimer’s disease (AD), the 5th leading cause of death for people aged 65 and older, is likely to increase in these groups. Most dementia caregiving for these populations comes from family and friends, especially among families with lower socioeconomic status. A convenience sample of 30 African-American dementia caregivers was interviewed to determine unmet needs. Participants expressed a limited desire for formal services, such as support groups, legal advice, case management, and homemaker services. Instead, commonly expressed needs were daytime respite care and especially a desire for family and social support. Many caregivers expressed a need for other family members to share responsibility in the process; therefore, methods for caregiver support that address multiple family members in care provision may be beneficial for this group. PMID:27182464

  2. The Zarit Burden Interview in Portugal: Validity and recommendations in dementia and palliative care.

    PubMed

    Gonçalves-Pereira, Manuel; Zarit, Steven H

    2014-01-01

    The impact of dementia on informal or family caregivers became a public health issue. One well-established tool for the assessment of emotional, physical and social impact on caregivers is the Zarit Burden Interview. Worldwide, it is widely used in epidemiological studies, drug or psychosocial clinical trials, and health services research. The original focus on burden among dementia caregivers has spread to other clinical contexts, mostly in old age and palliative care. Given these diverse applications, issues around the validity and reliability of national translations are crucial to assure that all evidence gathered is indeed of high quality. Moreover, caution is needed on the use of cut-offs for categorizing levels of caregiver strain or of subscales derived from recurrent exploratory factor analyses in small-scale local studies. As with other translations of measures in the health field, researchers and clinicians in Portugal must be aware of how to address bias in using the Zarit Burden Interview and interpreting findings.

  3. Cognitive-Behavioral Treatment for Anxiety in Patients With Dementia

    PubMed Central

    KRAUS, CYNTHIA A.; SEIGNOUREL, PAUL; BALASUBRAMANYAM, VALLI; SNOW, A. LYNN; WILSON, NANCY L.; KUNIK, MARK E.; SCHULZ, PAUL E.; STANLEY, MELINDA A.

    2008-01-01

    Anxiety is common in dementia and is associated with decreased independence and increased risk of nursing home placement. However, little is known about the treatment of anxiety in dementia. This article reports results from two patients who were treated with a modified version of cognitive-behavioral therapy for anxiety in dementia (CBT-AD). Modifications were made in the content, structure, and learning strategies of CBT to adapt skills to the cognitive limitations of these patients and include collaterals (i.e., family members, friends, or other caregivers) in the treatment process. The patients received education and awareness training and were taught the skills of diaphragmatic breathing, coping self-statements, exposure, and behavioral activation. The Clinical Dementia Rating (CDR) Scale was used to characterize dementia severity and determine eligibility for treatment (a CDR score of 0.5 to 2.0 was required for participation). Other measures included the Rating Anxiety in Dementia scale, the Neuropsychiatric Inventory Anxiety subscale, and the Mini International Neuropsychiatric Interview. Outcome data showed improvement in anxiety as measured by standardized rating scales. We conclude that CBT-AD is potentially useful in treating anxiety in dementia patients and that this technique merits further study. PMID:18520790

  4. Group caregiver language checklist.

    PubMed

    Pearson, M E; Shelton, D; Pearson, A A; Miller, M

    1992-01-01

    Because young children with language disabilities frequently are placed in group-care settings, there is a need to make judgments concerning the language environment of those settings. The GCLC is offered as one procedure for assessment of the language environment provided by the caregiver(s) in a group setting. The assessment provides information that may assist in matching the environment to a particular child's needs and may provide a basis for assisting caregivers in improving the language environment and addressing a child's needs. The authors welcome comments from the readers.

  5. Supportive seminar groups: an intervention for early stage dementia patients.

    PubMed

    Snyder, L; Quayhagen, M P; Shepherd, S; Bower, D

    1995-10-01

    A supportive seminar group was developed and conducted for individuals with early stage dementia and their caregivers. The eight sessions focused on pertinent topics, namely, coping with memory problems, daily living, self-esteem, relationships, health, legal, and financial concerns. Content analysis of the evaluative statements from nine men and six women patients revealed positive themes of feelings of purposefulness, gratification, belongingness, and survival, while other themes reflected the turmoil of the disease, namely, feelings of helplessness, devaluation, and unpredictability. These preliminary findings lend support to the feasibility of a group approach for early stage dementia patients.

  6. Cognitive Impairment and Dementia in Patients with Parkinson Disease

    PubMed Central

    Leverenz, James B.; Quinn, Joseph F.; Zabetian, Cyrus; Zhang, Jing; Montine, Kathleen S.; Montine, Thomas J.

    2009-01-01

    Parkinson disease (PD) is an already prevalent neurodegenerative disease that is poised to at least double over the next 25 years. Although best known for its characteristic movement disorder, PD is now appreciated commonly to cause cognitive impairment, including dementia, and behavioral changes. Dementia in patients with PD is consequential and has been associated with reduced quality of life, shortened survival, and increased caregiver distress. Here we review clinical presentation and progression, pathological bases, identification of genetic risk factors, development of small molecule biomarkers, and emerging treatments for cognitive impairment in patients with PD. PMID:19754405

  7. PRO DEM: A Community-Based Approach to Care for Dementia

    PubMed Central

    Hesse, Eberhard

    2005-01-01

    Physicians in a region south of Bremen, Germany, created PRO DEM (for patients with dementia), a service coordinating medical care and social intervention for patients with dementia. The program now serves about 125 outpatients and their families, along with 360 patients in nursing homes. Two nurse consultants coordinate patient care. Treatment strategies are decided during a multidisciplinary case conference among physicians, nurses, and other professionals. Social intervention modules include various care groups for patients and respite services for caregivers. PRO DEM aims to provide fully coordinated care for a better quality of life for patients and caregivers, delaying nursing home admission as long as possible. PMID:17288081

  8. Knowledge of Memory Aging in Students, Caregivers, and Senior Service Providers

    ERIC Educational Resources Information Center

    Cherry, Katie E.; Allen, Priscilla D.; Boudreaux, Emily O.; Robichaux, Mary L.; Hawley, Karri S.

    2009-01-01

    The Knowledge of Memory Aging Questionnaire (KMAQ) (Cherry, Brigman, Hawley, & Reese, 2003) measures laypersons' knowledge of normal memory changes in late life and pathological deficits due to nonnormative factors such as adult dementia. In this study, we examined memory knowledge in community college and university students, caregivers, and…

  9. Research protocol of the NeedYD-study (Needs in Young onset Dementia): a prospective cohort study on the needs and course of early onset dementia

    PubMed Central

    2010-01-01

    Background Early onset dementia has serious consequences for patients and their family members. Although there has been growing attention for this patient group, health care services are still mainly targeted at the elderly. Specific knowledge of the needs of early onset dementia patients and their families is limited but necessary for the development of adequate health care services and specific guidelines. This research project is mainly targeted at delineating the course of early onset dementia, the functional characteristics and needs of early onset dementia patients and their caregivers, the risk factors for institutionalization and the interaction with the caring environment. Methods/Design The NeedYD-study (Needs in Young Onset Dementia) is a longitudinal observational study investigating early onset dementia patients and their caregivers (n = 217). Assessments are performed every six months over two years and consist of interviews and questionnaires with patients and caregivers. The main outcomes are (1) the needs of patients and caregivers, as measured by the Camberwell Assessment of Needs for the Elderly (CANE) and (2) neuropsychiatric symptoms, as measured by the NeuroPsychiatric Inventory (NPI). Qualitative analyses will be performed in order to obtain more in-depth information on the experiences of EOD patients and their family members. The results of this study will be compared with comparable data on late onset dementia from a historical cohort. Discussion The study protocol of the NeedYD-study is presented here. To our knowledge, this study is the first prospective cohort study in this research area. Although some limitations exist, these do not outweigh the strong points of this study design. PMID:20226041

  10. Caregiver Health and Wellness

    MedlinePlus

    ... content was developed with general underwriting support from Nature Made®. ... Caregiver stress fact sheet by U.S. Department of Health and Human Services, Office on Women’s Health ( April 10, 2012, ...

  11. Caregivers and Serious Illness

    MedlinePlus

    ... index. aspx National Respite Locator Information on respite services in your community http: / / archrespite. org/ respitelocator Healthfinder.gov Basic tips and strategies for caregivers http: / / www. healthfinder. gov/ HealthTopics/ Category/ ...

  12. THE ASSESSMENT OF CAREGIVER BURDEN IN CAREGIVERS OF HEMODIALYSIS PATIENTS

    PubMed Central

    Mashayekhi, Fatemeh; Pilevarzadeh, Motahareh; Rafati, Foozieh

    2015-01-01

    Background: Chronic renal failure is among the chronic disease which due to persistence of the disease and long treatment process has various effects on the physiological, psychological, functional ability, lifestyle changes, and independence status of the patient and his family. This may result in the burden feeling in caregivers. According to the importance of the subject, this study is to assess the level of caregiver burden in caregivers of hemodialysis patients. Methods: This is a cross-sectional analytical descriptive study that was conducted in 2014 on the caregivers of hemodialysis patients. Research instruments were consisted of two parts: demographic data check list and caregiver burden questionnaire. Data were analyzed by SPSS statistical software and Pearson correlation coefficient tests. A p value of less than 0.05 was considered statistically significant. Results: In this study, 72.5% of caregivers reported moderate to severe levels of caregiver burden. A significant relationship was observed between gender of the patient with caregiver burden score of (p=0.031) and type of the income with caregiver burden score of (p=0.000). Caregivers of male patients and patients with inadequate income had a higher caregiver burden score. Conclusions: Our results showed that more than half of the caregivers of hemodialysis patients had moderate to severe levels of caregiver burden, therefore it is worthy that health officials and nurses pay special attention to this issue by communicating with these patients and their caregivers. PMID:26622201

  13. [Drug-induced dementia].

    PubMed

    Kojima, Taro; Akishita, Masahiro

    2016-03-01

    Many drugs have been reported to induce not only delirium but also cognitive impairment. Some types of drugs are reported to induce dementia, and prolonged hypotension or hypoglycemia induced by overuse of antihypertensive drugs or oral antidiabetic drugs could result in dementia. Recently, taking multiple drugs with anticholinergic activity are reported to cause cognitive decline and anticholinergic burden should be avoided especially in patients with dementia. Drug-induced dementia can be prevented by avoiding polypharmacy and adhering to the saying 'start low and go slow' . Early diagnosis of drug-induced dementia and withdrawal of the offending drug is essential to improve cognitive function. PMID:27025096

  14. Prospects for delaying the rising tide of worldwide, late-life dementias.

    PubMed

    Larson, Eric B

    2010-12-01

    Worldwide, lifespan is lengthening. Concomitantly, late-life dementias are increasingly common, challenging both personal and public health internationally. After age 65, rates of dementia tend to double every five years in developed countries and every seven in developing ones. The late-life dementias, particularly Alzheimer's disease, have profound effects on aging individuals and their caregivers. Multidisciplinary research has explored the potential for various approaches to prevent or delay the onset of late-life dementias. Outlining that research, including our team's Adult Changes in Thought and Kame studies, this review concludes that delaying the onset of these dementias appears feasible, although absolute prevention may not be. Today, the most promising methods appear to include controlling vascular risk factors like hypertension and engaging in physical exercise - and possibly mental exercise. If people can delay the onset of dementias, they can lead more fulfilling lives for longer, spending less time suffering from dementia and letting their families spend less time coping with the disease. It is possible that trends toward more knowledge-based societies, where cognitive health is so vital, may increasingly exert evolutionary pressure favoring larger and healthier brains - and a "compression of cognitive morbidity" - well into old age. Public health's great triumph, increased lifespan, should give more of the world's people the reward of many years of dementia-free life. Rather than the personal difficulties and public health burdens of many years of functional impairment, dependency, and suffering with dementia, some interventions may delay the onset of Alzheimer's disease and other dementias.

  15. Formal care providers' perceptions of home- and community-based services: informing dementia care quality.

    PubMed

    Jansen, Lynn; Forbes, Dorothy A; Markle-Reid, Maureen; Hawranik, Pamela; Kingston, Dawn; Peacock, Shellie; Henderson, Sandra; Leipert, Beverly

    2009-01-01

    Little attention has been given to the perceptions of formal care providers on the nature and quality of home- and community-based dementia care. The purpose of this descriptive interpretive research was to explore formal care providers' perceptions of their experiences with Canadian home- and community-based dementia care. Participants within three personal interviews and six focus groups (n = 41) included nurses, social workers, therapists, home care aides, and Alzheimer Society personnel (front line/management) in rural and urban areas of Saskatchewan (n = 16), Manitoba (n = 20), and Ontario (n = 8). Two overarching thematic categories, Service Availability and Service Acceptability, emerged from the data analysis. Subthemes of availability were identified as: (a) challenges of service availability, including service wait lists, lack of home care provider training, lack of community-based dementia care infrastructure, and sociocultural and geographic barriers to accessing dementia services; and (b) essential facilitators of availability, including service infrastructure, service bridging, and agency partnerships to form coordinated care systems. Subthemes of acceptability were revealed as: (a) essential components of dementia care, including provision of comprehensive personal care and the use of dementia care professional practice knowledge within a home care setting; and (b) service challenges, including inadequate service time for the physical care and socioemotional support of the client and family caregiver, caregiver and formal provider difficulty with navigation of a fragmented care system, lack of system coordination, and financial costs of services. Essential, integrated dementia care could be established by listening to the "voices of formal care providers," thereby decreasing dementia care costs and increasing the quality of life for those with dementia, and their family caregivers.

  16. Perceived caregiver stress in Alzheimer's disease and mild cognitive impairment: A case control study

    PubMed Central

    Anand, Kuljeet Singh; Dhikav, Vikas; Sachdeva, Ankur; Mishra, Pinki

    2016-01-01

    Objectives: Cross sectional studies have reported a tremendous amount of stress in caregivers of patients with Alzheimer's disease (AD) and Mild Cognitive Impairment (MCI). The present study aimed at evaluating the perceived stress in caregivers of patients with AD and MCI compared to controls. Materials and Methods: Caregivers of patients diagnosed with Alzheimer's disease/Mild Cognitive Impairment were recruited at the Memory Clinic of Neurology Department of a Tertiary Care Hospital in Northern India. The controls included caregivers of patients with chronic medical and psychiatric disorders. Caregivers were interviewed using Perceived Stress Scale (PSS) and the patients were assessed using The Blessed Activity of Daily Living (ADL), Mini Mental State Examination (MMSE) and Clinical Dementia Rating scale. The perceived stress of caregivers was compared amongst both groups and correlated with the severity of illness and activities of daily living of the patients. Results: Caregivers of a total of 31 patients of AD/MCI (Males = 24, Females = 7), and 30 controls (Males = 18, Females = 12) were interviewed. PSS Score was 23.29 ± 7.17 in cases and 7.5 ± 3.12 in controls. ADL Score was 7.97±5.53 in cases and 0.00 in controls. There was a significant difference between the PSS and ADL scores between those with AD and controls (P < 0.0001). Caregivers of patients with MCI had lower PSS scores compared to AD caregivers but significantly higher scores compared to caregivers of other chronic disorders. Similarly, correlation between Perceived Stress and ADL was significant (P < 0.001). Conclusions: Present study shows that caregivers of patients with AD/MCI have a high perceived stress compared to caregivers of patients with other chronic illness. PMID:27011630

  17. Music and dementia.

    PubMed

    Baird, Amee; Samson, Séverine

    2015-01-01

    There is an increasing incidence of dementia in our aging population, and consequently an urgent need to develop treatments and activities that may alleviate the symptoms of dementia. Accumulating evidence shows that persons with dementia enjoy music, and their ability to respond to music is potentially preserved even in the late or severe stages of dementia when verbal communication may have ceased. Media interest in this topic has contributed to the public perception that music abilities are an "island of preservation" in an otherwise cognitively impaired person with dementia. In this chapter, we review the current literature on music cognition in dementia and show that there has been very scarce rigorous scientific investigation of this issue, and that various types of music memory exist and are differentially impaired in the different types of dementia. Furthermore, we discuss the recent development of music activities as a nonpharmacological treatment for dementia and highlight the methodological limitations of the current literature on this topic. While it has been reported that music activities can improve behavior, (particularly agitation), mood, and cognition in persons with dementia, recent large-scale randomized control studies have questioned the specificity of the effect of music and found that it is no more beneficial than other pleasant activities. Nevertheless, music is unique in its powerful ability to elicit both memories and emotions. This can provide an important link to individual's past and a means of nonverbal communication with carers, which make it an ideal stimulus for persons with dementia. PMID:25725917

  18. Music and dementia.

    PubMed

    Baird, Amee; Samson, Séverine

    2015-01-01

    There is an increasing incidence of dementia in our aging population, and consequently an urgent need to develop treatments and activities that may alleviate the symptoms of dementia. Accumulating evidence shows that persons with dementia enjoy music, and their ability to respond to music is potentially preserved even in the late or severe stages of dementia when verbal communication may have ceased. Media interest in this topic has contributed to the public perception that music abilities are an "island of preservation" in an otherwise cognitively impaired person with dementia. In this chapter, we review the current literature on music cognition in dementia and show that there has been very scarce rigorous scientific investigation of this issue, and that various types of music memory exist and are differentially impaired in the different types of dementia. Furthermore, we discuss the recent development of music activities as a nonpharmacological treatment for dementia and highlight the methodological limitations of the current literature on this topic. While it has been reported that music activities can improve behavior, (particularly agitation), mood, and cognition in persons with dementia, recent large-scale randomized control studies have questioned the specificity of the effect of music and found that it is no more beneficial than other pleasant activities. Nevertheless, music is unique in its powerful ability to elicit both memories and emotions. This can provide an important link to individual's past and a means of nonverbal communication with carers, which make it an ideal stimulus for persons with dementia.

  19. Recruiting and retaining family caregivers to a randomized controlled trial on mindfulness-based stress reduction.

    PubMed

    Whitebird, Robin R; Kreitzer, Mary Jo; Lewis, Beth A; Hanson, Leah R; Crain, A Lauren; Enstad, Chris J; Mehta, Adele

    2011-09-01

    Caregivers for a family member with dementia experience chronic long-term stress that may benefit from new complementary therapies such as mindfulness-based stress reduction. Little is known however, about the challenges of recruiting and retaining family caregivers to research on mind-body based complementary therapies. Our pilot study is the first of its kind to successfully recruit caregivers for a family member with dementia to a randomized controlled pilot study of mindfulness-based stress reduction. The study used an array of recruitment strategies and techniques that were tailored to fit the unique features of our recruitment sources and employed retention strategies that placed high value on establishing early and ongoing communication with potential participants. Innovative recruitment methods including conducting outreach to health plan members and generating press coverage were combined with standard methods of community outreach and paid advertising. We were successful in exceeding our recruitment goal and retained 92% of the study participants at post-intervention (2 months) and 90% at 6 months. Recruitment and retention for family caregiver interventions employing mind-body based complementary therapies can be successful despite many challenges. Barriers include cultural perceptions about the use and benefit of complementary therapies, cultural differences with how the role of family caregiver is perceived, the use of group-based designs requiring significant time commitment by participants, and travel and respite care needs for busy family caregivers. PMID:21601010

  20. Recruiting and Retaining Family Caregivers to a Randomized Controlled Trial on Mindfulness-Based Stress Reduction

    PubMed Central

    Whitebird, Robin R.; Kreitzer, Mary Jo; Lewis, Beth A.; Hanson, Leah R.; Crain, A. Lauren; Enstad, Chris J.; Mehta, Adele

    2011-01-01

    Caregivers for a family member with dementia experience chronic long-term stress that may benefit from new complementary therapies such as mindfulness-based stress reduction. Little is known however, about the challenges of recruiting and retaining family caregivers to research on mind-body based complementary therapies. Our pilot study is the first of its kind to successfully recruit caregivers for a family member with dementia to a randomized controlled pilot study of mindfulness-based stress reduction. The study used an array of recruitment strategies and techniques that were tailored to fit the unique features of our recruitment sources and employed retention strategies that placed high value on establishing early and ongoing communication with potential participants. Innovative recruitment methods including conducting outreach to health plan members and generating press coverage were combined with standard methods of community outreach and paid advertising. We were successful in exceeding our recruitment goal and retained 92% of the study participants at post-intervention (2 months) and 90% at 6 months. Recruitment and retention for family caregiver interventions employing mind-body based complementary therapies can be successful despite many challenges. Barriers include cultural perceptions about the use and benefit of complementary therapies, cultural differences with how the role of family caregiver is perceived, the use of group-based designs requiring significant time commitment by participants, and travel and respite care needs for busy family caregivers. PMID:21601010

  1. Behavioral and Psychological Symptoms of Dementia

    PubMed Central

    Cerejeira, J.; Lagarto, L.; Mukaetova-Ladinska, E. B.

    2012-01-01

    Behavioral and psychological symptoms of dementia (BPSD), also known as neuropsychiatric symptoms, represent a heterogeneous group of non-cognitive symptoms and behaviors occurring in subjects with dementia. BPSD constitute a major component of the dementia syndrome irrespective of its subtype. They are as clinically relevant as cognitive symptoms as they strongly correlate with the degree of functional and cognitive impairment. BPSD include agitation, aberrant motor behavior, anxiety, elation, irritability, depression, apathy, disinhibition, delusions, hallucinations, and sleep or appetite changes. It is estimated that BPSD affect up to 90% of all dementia subjects over the course of their illness, and is independently associated with poor outcomes, including distress among patients and caregivers, long-term hospitalization, misuse of medication, and increased health care costs. Although these symptoms can be present individually it is more common that various psychopathological features co-occur simultaneously in the same patient. Thus, categorization of BPSD in clusters taking into account their natural course, prognosis, and treatment response may be useful in the clinical practice. The pathogenesis of BPSD has not been clearly delineated but it is probably the result of a complex interplay of psychological, social, and biological factors. Recent studies have emphasized the role of neurochemical, neuropathological, and genetic factors underlying the clinical manifestations of BPSD. A high degree of clinical expertise is crucial to appropriately recognize and manage the neuropsychiatric symptoms in a patient with dementia. Combination of non-pharmacological and careful use of pharmacological interventions is the recommended therapeutic for managing BPSD. Given the modest efficacy of current strategies, there is an urgent need to identify novel pharmacological targets and develop new non-pharmacological approaches to improve the adverse outcomes associated with

  2. Role Expectations in Dementia Care Among Family Physicians and Specialists

    PubMed Central

    Hum, Susan; Cohen, Carole; Persaud, Malini; Lee, Joyce; Drummond, Neil; Dalziel, William; Pimlott, Nicholas

    2014-01-01

    Background The assessment and ongoing management of dementia falls largely on family physicians. This pilot study explored perceived roles and attitudes towards the provision of dementia care from the perspectives of family physicians and specialists. Methods Semi-structured, one-to-one interviews were conducted with six family physicians and six specialists (three geriatric psychiatrists, two geriatricians, and one neurologist) from University of Toronto-affiliated hospitals. Transcripts were subjected to thematic content analysis. Results Physicians’ clinical experience averaged 16 years. Both physician groups acknowledged that family physicians are more confident in diagnosing/treating uncomplicated dementia than a decade ago. They agreed on care management issues that warranted specialist involvement. Driving competency was contentious, and specialists willingly played the “bad cop” to resolve disputes and preserve long-standing therapeutic relationships. While patient/caregiver education and support were deemed essential, most physicians commented that community resources were fragmented and difficult to access. Improving collaboration and communication between physician groups, and clarifying the roles of other multi-disciplinary team members in dementia care were also discussed. Conclusions Future research could further explore physicians’ and other multi-disciplinary members’ perceived roles and responsibilities in dementia care, given that different health-care system-wide dementia care strategies and initiatives are being developed and implemented across Ontario. PMID:25232368

  3. Quality improvement in neurology: dementia management quality measures.

    PubMed

    Odenheimer, Germaine; Borson, Soo; Sanders, Amy E; Swain-Eng, Rebecca J; Kyomen, Helen H; Tierney, Samantha; Gitlin, Laura; Forciea, Mary Ann; Absher, John; Shega, Joseph; Johnson, Jerry

    2014-03-01

    Professional and advocacy organizations have long urged that dementia should be recognized and properly diagnosed. With the passage of the National Alzheimer's Project Act in 2011, an Advisory Council for Alzheimer's Research, Care, and Services was convened to advise the Department of Health and Human Services. In May 2012, the Council produced the first National Plan to address Alzheimer's disease, and prominent in its recommendations is a call for quality measures suitable for evaluating and tracking dementia care in clinical settings. Although other efforts have been made to set dementia care quality standards, such as those pioneered by RAND in its series Assessing Care of Vulnerable Elders (ACOVE), practitioners, healthcare systems, and insurers have not widely embraced implementation. This executive summary (full manuscript available at www.neurology.org) reports on a new measurement set for dementia management developed by an interdisciplinary Dementia Measures Work Group (DWG) representing the major national organizations and advocacy organizations concerned with the care of individuals with dementia. The American Academy of Neurology (AAN), the American Geriatrics Society, the American Medical Directors Association, the American Psychiatric Association, and the American Medical Association-convened Physician Consortium for Performance Improvement led this effort. The ACOVE measures and the measurement set described here apply to individuals whose dementia has already been identified and properly diagnosed. Although similar in concept to ACOVE, the DWG measurement set differs in several important ways; it includes all stages of dementia in a single measure set, calls for the use of functional staging in planning care, prompts the use of validated instruments in patient and caregiver assessment and intervention, highlights the relevance of using palliative care concepts to guide care before the advanced stages of illness, and provides evidence-based support

  4. The Korean version of the neuropsychiatric inventory: a scoring tool for neuropsychiatric disturbance in dementia patients.

    PubMed

    Choi, S H; Na, D L; Kwon, H M; Yoon, S J; Jeong, J H; Ha, C K

    2000-12-01

    The Neuropsychiatric Inventory (NPI) is a standardized, validated, and reliable tool to assess neuropsychiatric derangements in dementia patients. The aim of this study is to develop the Korean version of the NPI (K-NPI) and to test its reliability and usefulness in dementia patients. The subjects were 49 normal controls and 92 patients with Alzheimer's disease (43), vascular dementia (32), frontotemporal lobar degeneration (11), and other causes (6). Their caregivers familiar with the subjects' everyday behavior were interviewed with the K-NPI. In a subgroup (29/141) of the caregivers, the K-NPI was repeated for test-retest reliability, average of 23.1 days after the initial test. Prevalence rates of 12 behavioral domains in dementia patients were comparable to those of the original NPI; apathy was the most common and hallucination was the least common behavior. Total K-NPI scores correlated positively with dementia severity assessed with the Korean Mini-Mental State Examination. Test-retest reliabilities of frequencies and severities of all subscales were significantly high. Depression, anxiety, apathy, irritability, night-time behavior, and eating change were identified at very low rates in normal controls and were significantly less than those in dementia patients (p<0.001). The K-NPI, whose reliability and competency are comparable to those of the original version, may be a reliable and useful tool for measuring neuropsychiatric disturbances in Korean dementia patients.

  5. R. I. Caregivers. Caring: A Training Program for Family Caregivers.

    ERIC Educational Resources Information Center

    Rhode Island State Dept. of Elderly Affairs, Providence.

    This document presents a training manual to help caregivers who provide care to older family members and friends at home. The program, which offers a practical approach to caregiving and a realistic view of the aging process, is intended to clarify the problems confronting caregivers of older people, serve as a basic source manual for training…

  6. Family Caregiving. A Manual for Caregivers of Older Adults.

    ERIC Educational Resources Information Center

    Mehrotra, Chandra, Ed.; And Others

    This manual provides caregivers with practical knowledge and suggestions that could be of help to them in this important role. Chapter 1 gives an overview of the volume and tells how to use it. Chapter 2 identifies who caregivers are, what they do, and what changes have taken place in their lives since they became caregivers. Chapter 3 begins with…

  7. Stress Relief for the Caregiver

    MedlinePlus

    ... you can take a break from your caregiving responsibilities to enjoy time alone or with friends. Visit ... respite, by allowing another individual to assume caregiving responsibilities for a limited period of time. It gives ...

  8. Mexican American intergenerational caregiving model.

    PubMed

    Escandón, Socorro

    2006-08-01

    This study employed grounded theory to formulate a conceptual model of intergenerational caregiving among Mexican American families. The sample consisted of 10 Mexican American caregivers of various generations older than 21 who provided at least one intermittent service (without pay at least once a month) to an elder, related through consanguinal or acquired kinship ties. The inductively generated theory of role acceptance is composed of four phases: (a) introduction--early caregiving experiences, (b) role reconciliation, (c) role imprint, and (d) providing or projecting care. This model can be used to study varied generations of Mexican American caregivers. It also provides a framework for comparison with other groups of caregivers. The results can help in designing nursing interventions to support caregivers based on understanding the issues, to create and design systems that address the varying and ever-changing needs of informal caregivers, and to assist in the formulation of policy that supports Mexican American caregivers.

  9. [Exploration of Eating Difficulties of Patients With Dementia].

    PubMed

    Wang, Shou-Na; Chang, Chia-Chi; Lee, Pi-Hsia

    2016-08-01

    The number of people living with dementia is growing as the average age of the population rises. Eating difficulties are a common problem for dementia patients and their caregivers. The etiology of these difficulties is often complicated. Weight loss, poor nutrition, aspiration pneumonia, and associated medical admissions or even mortality may occur as soon as an eating difficulty develops. This paper presents a literature review of the eating difficulties of dementia patients. The process of eating involves four stages: recognizing food, taking food into the mouth, chewing, and swallowing. We discuss the causes and clinical manifestations of eating difficulties at each of these stages and introduce an intervention for overcoming eating difficulties, aiming at providing choices of methods to improve eating behavior. The author hopes that this review will help medical personnel / caregivers enhance their understanding of the etiology and the clinical manifestation of eating difficulties in dementia patients, evaluate the overall condition of their patient(s), and provide an appropriate intervention in order to help these patients experience the most comfortable and non-invasive ways of eating or feeding, improve their quality of eating, and realize with their family improved spiritual well-being. PMID:27492304

  10. How do persons with dementia participate in decision making related to health and daily care? A multi-case study

    PubMed Central

    2012-01-01

    Background Many countries have passed laws giving patients the right to participate in decisions about health care. People with dementia cannot be assumed to be incapable of making decisions on their diagnosis alone as they may have retained cognitive abilities. The purpose of this study was to gain a better understanding of how persons with dementia participated in making decisions about health care and how their family carers and professional caregivers influenced decision making. Methods This Norwegian study had a qualitative multi-case design. The triad in each of the ten cases consisted of the person with dementia, the family carer and the professional caregiver, in all 30 participants. Inclusion criteria for the persons with dementia were: (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating score 2, moderate dementia; (3) able to communicate verbally. The family carers and professional caregivers were then asked to participate. A semi-structured interview guide was used in interviews with family carers and professional caregivers. Field notes were written after participant observation of interactions between persons with dementia and professional caregivers during morning care or activities at a day centre. How the professional caregivers facilitated decision making was the focus of the observations that varied in length from 30 to 90 minutes. The data were analyzed using framework analysis combined with a hermeneutical interpretive approach. Results Professional caregivers based their assessment of mental competence on experience and not on standardized tests. Persons with dementia demonstrated variability in how they participated in decision making. Pseudo-autonomous decision making and delegating decision making were new categories that emerged. Autonomous decision making did occur but shared decision making was the most typical pattern. Reduced mental capacity, lack of available choices or not being given the opportunity to

  11. Disease-modifying therapeutic directions for Lewy-Body dementias

    PubMed Central

    Zhang, Qiang; Kim, Young-Cho; Narayanan, Nandakumar S.

    2015-01-01

    Dementia with Lewy bodies (DLB) is the second leading cause of dementia following Alzheimer's disease (AD) and accounts for up to 25% of all dementia. DLB is distinct from AD in that it involves extensive neuropsychiatric symptoms as well as motor symptoms, leads to enormous societal costs in terms of direct medical care and is associated with high financial and caregiver costs. Although, there are no disease-modifying therapies for DLB, we review several new therapeutic directions in treating DLB. We discuss progress in strategies to decrease the level of alpha-synuclein, to prevent the cell to cell transmission of misfolded alpha-synuclein, and the potential of brain stimulation in DLB. PMID:26347604

  12. Development of the Knowledge of Dementia Competencies Self-Assessment Tool.

    PubMed

    Curyto, Kimberly J; Vriesman, Deedre K

    2016-02-01

    Competent dementia care requires caregivers with specialized knowledge and skills. The Knowledge of Dementia Competencies Self-Assessment Tool was developed to help direct care workers (DCWs) assess their knowledge of 7 dementia competencies identified by the Michigan Dementia Coalition. Item selection was guided by literature review and expert panel consultation. It was given to 159 DCWs and readministered to 57 DCWs in a range of long-term care settings and revised based on qualitative feedback and statistical item analyses, resulting in 82 items demonstrating good internal consistency and test-retest reliability. Performance on items assessing competencies rated as most important was significantly related to training in these competencies. The DCWs in day care obtained higher scores than those in home care settings, and their sites reported a greater number of hours of dementia training. Validation in a more diverse group of DCWs and assessing its relationship to other measures of knowledge and skill is needed.

  13. Brain Connectivity Alterations Are Associated with the Development of Dementia in Parkinson's Disease.

    PubMed

    Bertrand, Josie-Anne; McIntosh, Anthony R; Postuma, Ronald B; Kovacevic, Natasha; Latreille, Véronique; Panisset, Michel; Chouinard, Sylvain; Gagnon, Jean-François

    2016-04-01

    Dementia affects a high proportion of Parkinson's disease (PD) patients and poses a burden on caregivers and healthcare services. Electroencephalography (EEG) is a common nonevasive and nonexpensive technique that can easily be used in clinical settings to identify brain functional abnormalities. Only few studies had identified EEG abnormalities that can predict PD patients at higher risk for dementia. Brain connectivity EEG measures, such as multiscale entropy (MSE) and phase-locking value (PLV) analyses, may be more informative and sensitive to brain alterations leading to dementia than previously used methods. This study followed 62 dementia-free PD patients for a mean of 3.4 years to identify cerebral alterations that are associated with dementia. Baseline resting state EEG of patients who developed dementia (N = 18) was compared to those of patients who remained dementia-free (N = 44) and of 37 healthy subjects. MSE and PLV analyses were performed. Partial least squares statistical analysis revealed group differences associated with the development of dementia. Patients who developed dementia showed higher signal complexity and lower PLVs in low frequencies (mainly in delta frequency) than patients who remained dementia-free and controls. Conversely, both patient groups showed lower signal variability and higher PLVs in high frequencies (mainly in gamma frequency) compared to controls, with the strongest effect in patients who developed dementia. These findings suggest that specific disruptions of brain communication can be measured before PD patients develop dementia, providing a new potential marker to identify patients at highest risk of developing dementia and who are the best candidates for neuroprotective trials. PMID:26708056

  14. Preventing and diagnosing dementia.

    PubMed

    Keenan, Bernie; Jenkins, Catharine; Ginesi, Laura

    While dementia is an umbrella term for a range of degenerative brain disorders, many share similar presentations. Nurses are ideally placed to identify those at risk and empower them to access treatment and plan and prepare for their future needs--as such, they need up-to-date knowledge of the signs and symptoms of the different types of dementia to identify risk factors and make an informed diagnosis. This article, the third in a four-part series on dementia, examines the risk factors, signs, symptoms and diagnosis of dementia, as well as outlining lifestyle factors such as diet and exercise that may help to prevent the development of the condition.

  15. Sexual disinhibition and dementia.

    PubMed

    Cipriani, Gabriele; Ulivi, Martina; Danti, Sabrina; Lucetti, Claudio; Nuti, Angelo

    2016-03-01

    To describe inappropriate sexual behaviour (ISB) observed in patients with dementia, we conducted searches using the Cochrane Library, PubMed, and Web of Science to find relevant articles, chapters, and books published from 1950 to 2014. Search terms used included 'hypersexuality', 'inappropriate sexual behaviors', and 'dementia'. Publications found through this indexed search were reviewed for further relevant references. Sexuality is a human's need to express intimacy, but persons with dementia may not know how to appropriately meet their needs for closeness and intimacy due to their decline in cognition. Generally, the interaction among brain, physical, psychological, and environmental factors can create what we call ISB. The most likely change in the sexual behaviour of a person with dementia is indifference. However, ISB in dementia appear to be of two types--intimacy-seeking and disinhibited--that differ in their association with dementia type, dementia severity and, possibly, other concurrent behavioural disorder. Tensions develop from uncertainties regarding which, or when, behaviours are to be considered 'inappropriate' (i.e. improper) or abnormal. While most ISB occur in the moderate to severe stages of Alzheimer's dementia, they may also be seen in early stages of frontotemporal dementia because of the lack of insight and disinhibition. ISB are often better managed by non-pharmacological means, as patients may be less responsive to psychoactive therapies, but non-pharmacological interventions do not always stop the behaviour.

  16. Caregiving: A Qualitative Concept Analysis

    ERIC Educational Resources Information Center

    Hermanns, Melinda; Mastel-Smith, Beth

    2012-01-01

    A common definition of caregiving does not exist. In an attempt to define the concept of caregiving, the authors used a hybrid qualitative model of concept development to analyze caregiving. The model consists of three phases: (a) theoretical, (b) fieldwork, and (c) analytical. The theoretical phase involves conducting an interdisciplinary…

  17. 76 FR 26147 - Caregivers Program

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-05-05

    ... for a caregiver. It would not be rational to decouple the concepts such that, for example, a veteran... of the eligible veteran's and caregiver's physical and emotional states, observing for signs of abuse... offered to Primary and Secondary Family Caregivers to include individual and group therapy, counseling...

  18. Beliefs about Promoting Cognitive Health among Filipino Americans Who Care for Persons with Dementia

    ERIC Educational Resources Information Center

    Laditka, Sarah B.; Tseng, Winston; Price, Anna E.; Ivey, Susan L.; Friedman, Daniela B.; Liu, Rui; Wu, Bei; Logsdon, Rebecca G.; Beard, Renee L.

    2012-01-01

    We examined beliefs about promoting cognitive health among Filipino Americans who care for persons with dementia, their awareness of media information about cognitive health, and their suggestions for communicating such information to other caregivers. We conducted three focus groups (25 participants). The constant comparison method compared…

  19. Exploring functions of the lost seeking devices for people with dementia.

    PubMed

    Chen, Yung-Ching; Leung, Cherng-Yee

    2012-01-01

    This paper utilized a user-centered design approach as the foundation for technology in dementia care in order to improve the quality of telemedicine service. A status-quo analysis and questionnaire survey were conducted to explore the actual needs of the elders in using the lost seeking devices and the problems they encountered. In total, 37 caregivers for people with dementia were surveyed (20 female, 17 male, M = 50.08, SD = 15.47). The dementia-patients: 16 are male, 21 female (M = 72.75, SD = 10.23). Through analysis and induction, 3 problems were identified: poor information transmission, low user acceptance, individual material security anxiety. 2-4 improvement proposals are suggested for each problem. Most care-givers hope technological products would increase the efficiency and safety, but they also think it's too expensive and lack of computer skills. This result demonstrates the choice of seeking methods depends on the education level of the caregivers and most of them are elders. The concern of data leakage is also related to today's fraud issue, which may be the reason limiting the promotion of electronic products and biometrics. Further research is required, suggesting researchers should pursue improvements in lost seeking design devices in dementia for caregivers. PMID:22317189

  20. Mental Health Correlates of Aggression in Nursing Home Residents with Dementia

    ERIC Educational Resources Information Center

    Talerico, Karen Amann; Evans, Lois K.; Strumpf, Neville E.

    2002-01-01

    Purpose: Aggression continues to challenge caregivers of persons with dementia, and identification of foci for effective interventions is needed. The purpose of this study was to examine the influence of (a) the resident characteristics of depression, communication, and cognition and (b) behavior management strategies on aggression in a group of…

  1. Dementia Care: Confronting Myths in Clinical Management.

    PubMed

    Neitch, Shirley M; Meadows, Charles; Patton-Tackett, Eva; Yingling, Kevin W

    2016-01-01

    Every day, patients with dementia, their families, and their physicians face the enormous challenges of this pervasive life-changing condition. Seeking help, often grasping at straws, victims, and their care providers are confronted with misinformation and myths when they search the internet or other sources. When Persons with Dementia (PWD) and their caregivers believe and/or act on false information, proper treatment may be delayed, and ultimately damage can be done. In this paper, we review commonly misunderstood issues encountered in caring for PWD. Our goal is to equip Primary Care Practitioners (PCPs) with accurate information to share with patients and families, to improve the outcomes of PWD to the greatest extent possible. While there are innumerable myths about dementia and its causes and treatments, we are going to focus on the most common false claims or misunderstandings which we hear in our Internal Medicine practice at Marshall Health. We offer suggestions for busy practitioners approaching some of the more common issues with patients and families in a clinic setting. PMID:27025116

  2. Dementia Care: Confronting Myths in Clinical Management.

    PubMed

    Neitch, Shirley M; Meadows, Charles; Patton-Tackett, Eva; Yingling, Kevin W

    2016-01-01

    Every day, patients with dementia, their families, and their physicians face the enormous challenges of this pervasive life-changing condition. Seeking help, often grasping at straws, victims, and their care providers are confronted with misinformation and myths when they search the internet or other sources. When Persons with Dementia (PWD) and their caregivers believe and/or act on false information, proper treatment may be delayed, and ultimately damage can be done. In this paper, we review commonly misunderstood issues encountered in caring for PWD. Our goal is to equip Primary Care Practitioners (PCPs) with accurate information to share with patients and families, to improve the outcomes of PWD to the greatest extent possible. While there are innumerable myths about dementia and its causes and treatments, we are going to focus on the most common false claims or misunderstandings which we hear in our Internal Medicine practice at Marshall Health. We offer suggestions for busy practitioners approaching some of the more common issues with patients and families in a clinic setting.

  3. [Approach to dysphagia in advanced dementia].

    PubMed

    Gómez-Busto, Fernando; Andia, Virginia; Ruiz de Alegria, Loli; Francés, Inés

    2009-11-01

    From the onset, dementia affects the patient's nutritional status, producing anorexia, weight loss, feeding apraxia and dysphagia. Distinct strategies are required in each of the stages of this disease, starting with awareness and knowledge of the problem and its prompt detection. In dementia, dysphagia usually appears in advanced phases, when the patient is often institutionalized. When dysphagia is suspected, the patient's tolerance must be evaluated by the volume/viscosity test, environmental and postural strategies should be introduced, and the texture of the diet should be modified. This is a complex task requiring the involvement of a properly trained interdisciplinary team, able to provide information and alternatives and integrate the family environment in the patient's care. The adapted diet should be based on the traditional diet that can also be combined with artificial supplements to provide a varied diet that increases patients', caregivers' and relatives' satisfaction. Tube feeding has shown no nutritional benefits in patients with advanced dementia. Therefore, we propose assisted oral feeding as the most natural and appropriate form of feeding in these patients, always respecting their previously expressed wishes.

  4. The cancer caregiving experience of caregivers of Mexican ancestry.

    PubMed

    Juarez, Gloria; Branin, Joan J; Rosales, Monica

    2014-01-01

    The act of providing care may be the same in all ethnic groups, but the way caregiving is defined by family members is influenced by cultural values and beliefs. This study describes the caregiving experience and challenges of caregivers of Mexican ancestry. Qualitative interviews of 20 family caregivers and thematic analysis of transcribed audiotapes identified four themes that characterized their caregiving experience. These themes include an emphasis on family values, a strong commitment to care, difficulties dealing with everyday life realities, and a reliance on spirituality, all of which added to the meaningfulness and burden of caregiving. Further investigation within a cultural context is warranted in the development of interventions and programs to better assist caregivers in coping with the challenges of providing cancer care.

  5. Family caregiving or caregiving alone: who helps the helper?

    PubMed

    Sims-Gould, Joanie; Martin-Matthews, Anne

    2007-01-01

    This study advances the understanding of family caregiving by examining the relationship between adult children caregivers and their helpers. Specifically, it focuses on examining "who helps whom" and extends analyses beyond the dyadic focus of caregiving in later life. The focus on helping and caregiving addresses the variety of contributions and responsibilities involving not only the caregiver who was the target respondent in this research, but also others identified as helpers in the provision of care. The data for this study are derived from the Work and Eldercare Research group of CARNET: The Canadian Aging Research Network. Secondary analysis of CARNET data focuses on data collected from 250 individuals with significant caregiving responsibilities for at least one older person. Findings extend Kahn & Antonucci's convoys of social support model (1981) and Cantor's model of social care (1991) by disentangling some of the dimensions of helping and caregiving, such as the distinction between direct and assistive help.

  6. Depression and caregiver burden among rural elder caregivers.

    PubMed

    Butler, Sandra S; Turner, Winston; Kaye, Lenard W; Ruffin, Leah; Downey, Roberta

    2005-01-01

    Family caregivers of older adults frequently experience feelings of burden and depression though they may not come to the attention to health and service providers until they are at a point of crisis. Through a simple screening tool, the Maine Primary Partners in Caring (MPPC) project identified individuals providing care to older adults through rural primary care practices, in order to provide upstream interventions before caregivers were in crisis. This paper describes a sample (n=62) of rural family caregivers identified through their physicians' offices. High levels of caregiver burden and depression were reported. Family support and knowledge of caregiver tasks predicted decreased caregiver burden and depression, while isolation predicted increased caregiver burden. Implications of these results for gerontological social workers are outlined.

  7. Dementia caregivers’ coping strategies and their relationship to health and well-being: The Cache County Study

    PubMed Central

    Snyder, Christine M.; Fauth, Elizabeth; Wanzek, Joseph; Piercy, Kathleen W.; Norton, Maria C.; Corcoran, Chris; Rabins, Peter V.; Lyketsos, Constantine G.; Tschanz, JoAnn T.

    2016-01-01

    Objectives Prior research identifies that psychological outcomes among dementia caregivers are associated with their use of coping strategies. Few studies have tested the association of coping and health longitudinally. Method This study examined factors associated with the use of coping strategies over time and their associations with physical and mental health outcomes in a population-based sample of 226 dementia caregivers in Cache County, Utah. Caregivers annually completed the Ways of Coping Checklist-Revised, the Beck Anxiety Inventory, and a health interview. Care-recipient cognitive and functional abilities were obtained using the Mini-Mental State Exam and the Clinical Dementia Rating. Neuropsychiatric symptoms were assessed using the Neuropsychiatric Inventory. Results Caregivers most frequently identified providing care as a problem (37.6%). Linear mixed models of caregiver coping strategies found that the use of most strategies were stable except for increasing Avoidance among adult child caregivers (β = 0.14, p = 0.048). On average, increased Wishful Thinking (β = 2.48, p < 0.001) or Blames Self (β = 1.06, p = 0.002) was associated with higher anxiety scores. Increased use of Blames Others among males (interaction, β = 0.28, p = 0.02) and greater use of Wishful Thinking among younger caregivers (interaction, β = −0.01, p = 0.01) was associated with more health conditions in the caregiver. Coping strategies were not associated with caregivers’ change in anxiety or number of health conditions over time. Conclusion Our results emphasize the importance of caregiver coping strategies on caregiver health and well-being and may identify subgroups of persons at risk for worse outcomes. PMID:25093439

  8. [New promising caregiver's psychoeducation training program: a Belgian experience in dementing disorders].

    PubMed

    Van den Berge, D; Bosman, N; Fery, P; Bier, J-C

    2010-01-01

    Facing difficulties due to dementia syndromes, systemic care is necessary. But nevertheless, caregivers are generally lacking in medical welfare. Therapies assessed specifically to caregivers are missing. Amongst these, psychoeducative steps seem to be the strongest effective's one on neuropsychiatrics symptoms. Psychoeducations tend to learn to caregivers to modify their interactions with patients via a better understanding of illnesses and patients. Our training "Pour mieux vivre avec la maladie d'Alzheimer ", done in groups of eight to twelve persons, is constituted of twelve sessions of two hours each. Complete formation includes behavioural and cognitive aspects of the disease and proposes some multidimensional approach which content at least pedagogical, psychological and cognitivo behavioural aspects. We illustrate here with the use of two peculiar cases that our program can reach its objectives. These preliminary results strongly argue for the pursuit and even extension of this kind of caregiver's management. PMID:20384050

  9. [New promising caregiver's psychoeducation training program: a Belgian experience in dementing disorders].

    PubMed

    Van den Berge, D; Bosman, N; Fery, P; Bier, J-C

    2010-01-01

    Facing difficulties due to dementia syndromes, systemic care is necessary. But nevertheless, caregivers are generally lacking in medical welfare. Therapies assessed specifically to caregivers are missing. Amongst these, psychoeducative steps seem to be the strongest effective's one on neuropsychiatrics symptoms. Psychoeducations tend to learn to caregivers to modify their interactions with patients via a better understanding of illnesses and patients. Our training "Pour mieux vivre avec la maladie d'Alzheimer ", done in groups of eight to twelve persons, is constituted of twelve sessions of two hours each. Complete formation includes behavioural and cognitive aspects of the disease and proposes some multidimensional approach which content at least pedagogical, psychological and cognitivo behavioural aspects. We illustrate here with the use of two peculiar cases that our program can reach its objectives. These preliminary results strongly argue for the pursuit and even extension of this kind of caregiver's management.

  10. Neuropsychiatric symptoms in patients with dementia in primary care: a study protocol

    PubMed Central

    2014-01-01

    Background Neuropsychiatric symptoms (NPS) frequently occur in patients with dementia. To date, prospective studies on the course of NPS have been conducted in patients with dementia in clinical centers or psychiatric services. The primary goal of this study is to investigate the course of NPS in patients with dementia and caregiver distress in primary care. We also aim to detect determinants of both the course of NPS in patients with dementia and informal caregiver distress in primary care. Methods/design This is a prospective observational study on the course of NPS in patients with dementia in primary care. Thirty-seven general practitioners (GPs) in 18 general practices were selected based on their interest in participating in this study. We will retrieve electronic medical files of patients with dementia from these general practices. Patients and caregivers will be followed for 18 months during the period January 2012 to December 2013. Patient characteristics will be collected at baseline. Time to death or institutionalization will be measured. Co-morbidity will be assessed using the Charlson index. Psychotropic drug use and primary and secondary outcome measures will be measured at 3 assessments, baseline, 9 and 18 months. The primary outcome measures are the Neuropsychiatric Inventory score for patients with dementia and the Sense of Competence score for informal caregivers. In addition to descriptive analyses frequency parameters will be computed. Univariate analysis will be performed to identify determinants of the course of NPS and informal caregiver distress. All determinants will then be tested in a multivariate regression analysis to determine their unique contribution to the course of NPS and caregiver distress. Discussion The results of this study will provide data on the course of NPS, which is clinically important for prognosis. The data will help GPs and other professionals in planning follow-up visits and in the timing for offering psycho

  11. Caring for the caregiver.

    PubMed

    Levy, Mitchell M

    2004-07-01

    There are certainly many coping behaviors that may assist ICU caregivers in the process of caring for themselves. Staff support groups,regular interdisciplinary meetings to discuss difficult cases,and bringing trained personnel into the intensive care unit (ICU)environment to offer staff training in communication and conflict resolution skills have been suggested as methods for alleviating caregiver stress. Combining these as well as other tools with a deeper look at the caregiver-patient relationship are important building blocks for creating a sane, healthy environment in the ICU. Over the next years, as the population ages, and as technologic advances continue, the critical care units will play an even more prominent role in health care. Given the threat posed by the severe nursing shortage, it becomes apparent that, to prepare for this increased need for critical care services, efforts must be directed to identify the sources of distress for ICU caregivers and develop focused training programs that alleviate the inevitably strains and pressures that arise in the process of compassionate caring for the critically ill. PMID:15183218

  12. Eldercare at Home: Caregiving

    MedlinePlus

    ... fill up all your time. This will then increase your stress and reduce your ability to give good care. Pay attention to positive ... If you do, caregiving can wear you out, increase your stress, and interfere with your ability to give good care at home. Support groups ...

  13. Care for the caregiver.

    PubMed

    Lynch, Bridget

    2002-09-01

    The issue of caring for the midwife caregiver is a complex issue when viewed within a global context. While national health-care systems vary significantly, midwives around the world are affected by the policies of economic globalisation. Caring for the caregiver must take place within the notion of a worldwide community of midwives, where caring for the caregiver is seen as caring for each other. In this address I examine the issue of caring for the caregiver from four perspectives: global, professional, workplace and personal. As midwives living and working in stressful environments, we are called upon to examine the ways in which we may be contributing to the systems that create the stresses. From the capabilities available to us through the International Confederation of Midwives to apply political pressure to global policies, to individual workplace conditions, midwives can affect change. By exploring alternative models and attitudes and challenging the status quo, we can apply our midwifery skills of caring to each other.

  14. Spousal caregiving for stroke survivors.

    PubMed

    Coombs, Ursula Eileen

    2007-04-01

    Caregiving for a spouse who has survived a stroke has multidimensional implications for both the partner and the spousal caregiver. A phenomenological study was conducted to examine the experiences of spousal caregivers for stroke survivors. Eight spouses who met the inclusion criteria participated in the study. van Manen's (1997) approach was used to examine the spousal caregivers' experiences. Data were collected through audiotapes from semistructured interviews. The interviews were transcribed to form textual descriptions of the caregivers' experiences. Six interrelated themes emerged through data analysis: experiencing a profound sense of loss, adjusting to a new relationship with a spouse, taking on new responsibilities, feeling the demands of caregiving, having to depend on the support of others, and maintaining hope and optimism. This study contributes to healthcare providers' understanding and knowledge of spousal caregivers for stroke survivors, and supports the need for continued research in this area. PMID:17477226

  15. [People's knowledge about dementia].

    PubMed

    Bogolepova, A N

    2015-01-01

    Cognitive impairment is one of the most urgent problems due to the high prevalence and disability. Timely identification and early diagnosis of dementia are the most important for successful management of patients that may be possible only if patients refer for medical care. In this connection, people's knowledge about dementia is of great importance. To study people's knowledge about problems of dementia. The survey was carried out in September 2014 in 42 regions of the Russian Federation (130 survey sites) and comprised 1600 respondents. The survey has revealed that 48% of participants are afraid to have dementia, 47% are not aware of signs and symptoms of marked cognitive impairment and 54% have concerns about age-related memory impairment. A low percent of people who refer for medical care may be explained by the widespread opinion (37% of Russians) that dementia is not curable; 42% believe that there are no drugs for treatment of dementia. Only 5% of respondents would visit a doctor if their relative has dementia. The results of this survey highlighted the necessity of using special programs to improve people's knowledge about problems of dementia.

  16. Lewy body dementias.

    PubMed

    Walker, Zuzana; Possin, Katherine L; Boeve, Bradley F; Aarsland, Dag

    2015-10-24

    The broad importance of dementia is undisputed, with Alzheimer's disease justifiably getting the most attention. However, dementia with Lewy bodies and Parkinson's disease dementia, now called Lewy body dementias, are the second most common type of degenerative dementia in patients older than 65 years. Despite this, Lewy body dementias receive little attention and patients are often misdiagnosed, leading to less than ideal management. Over the past 10 years, considerable effort has gone into improving diagnostic accuracy by refining diagnostic criteria and using imaging and other biomarkers. Dementia with Lewy bodies and Parkinson's disease dementia share the same pathophysiology, and effective treatments will depend not only on successful treatment of symptoms but also on targeting the pathological mechanisms of disease, ideally before symptoms and clinical signs develop. We summarise the most pertinent progress from the past 10 years, outlining some of the challenges for the future, which will require refinement of diagnosis and clarification of the pathogenesis, leading to disease-modifying treatments. PMID:26595642

  17. Dealing with Dementia

    MedlinePlus

    ... an NIH-supported Alzheimer’s disease center at the University of Wisconsin. “Symptoms of dementia can include problems with memory, thinking, and language, along with impairments to social skills and some behavioral symptoms.” Several factors can raise your risk for developing dementia. These ...

  18. Living With Semantic Dementia

    PubMed Central

    Sage, Karen; Wilkinson, Ray; Keady, John

    2014-01-01

    Semantic dementia is a variant of frontotemporal dementia and is a recently recognized diagnostic condition. There has been some research quantitatively examining care partner stress and burden in frontotemporal dementia. There are, however, few studies exploring the subjective experiences of family members caring for those with frontotemporal dementia. Increased knowledge of such experiences would allow service providers to tailor intervention, support, and information better. We used a case study design, with thematic narrative analysis applied to interview data, to describe the experiences of a wife and son caring for a husband/father with semantic dementia. Using this approach, we identified four themes: (a) living with routines, (b) policing and protecting, (c) making connections, and (d) being adaptive and flexible. Each of these themes were shared and extended, with the importance of routines in everyday life highlighted. The implications for policy, practice, and research are discussed. PMID:24532121

  19. [Hearing impairment and dementia].

    PubMed

    Kilimann, I; Óvari, A; Hermann, A; Witt, G; Pau, H W; Teipel, S

    2015-07-01

    The World Health Organization (WHO) burden of disease study identified dementia and hearing problems as leading causes of loss of quality of life in the industrial world. The prevalence of dementia and hearing problems increases in aging societies. Comorbidity of these two diseases causes increasing demands on healthcare systems. The similarity and possible interaction of symptoms renders diagnosis and therapy of dementia and hearing loss a challenge for neurologists, psychiatrists, ear, nose and throat (ENT) and hearing specialists. Knowledge of both diseases enables an early intervention and helps preserve participation in society and thereby reducing the risk of developing dementia. This paper focuses on the characteristics of the diagnosis and therapy of hearing problems and dementia.

  20. Caring for elderly people at home: the consequences to caregivers

    PubMed Central

    Grunfeld, E; Glossop, R; McDowell, I; Danbrook, C

    1997-01-01

    The emphasis on home-based care is one important aspect of health services restructuring initiatives in Canada. Fundamental to the preference for home-based care over institutional care is the expectation that family caregivers will be available in the home to support patients who would otherwise be in an institution. The authors explore the potential impact of this devolution of services from institutions to the home in 2 vulnerable patient populations--elderly patients with dementia and elderly patients with terminal illnesses. Community-based surveillance strategies are needed to determine the true health, quality-of-life and economic outcomes of these restructuring initiatives. PMID:9347781

  1. Dealing with mild cognitive impairment: help for patients and caregivers.

    PubMed

    Courtney, Donald L

    2013-11-01

    Mild cognitive impairment (MCI) is a unique entity in the spectrum of syndromes of cognitive loss. Many patients referred for evaluation of memory loss come with an assumption that they already have dementia. When patients are diagnosed with MCI, they and their caregivers have to deal with the challenge of uncertainties. Patient and family education must stress the uncertainty of whether the deficits will progress. This article aims to guide the clinician who has reached a diagnosis of MCI and is working with the patient and family on coping with the uncertainties of MCI.

  2. [Hospitalization and dementia: what was new in 2012?: literature review].

    PubMed

    Hofmann, W

    2013-04-01

    The present work provides a review of literature published in 2012 that were found in a PubMed search with the terms "hospitalization and dementia. Further information was obtained from personal contacts. The rate of publications was ten times higher in 2012 as in previous years. Frequency of dementia, hospital admission, acute coronary syndrome, femoral neck fracture, stroke, complications during hospital stay, outcomes after hospitalization, prediction, rehabilitation, and training are the common topics.

  3. Assessment of attachment behaviour to human caregivers in wolf pups (Canis lupus lupus).

    PubMed

    Hall, Nathaniel J; Lord, Kathryn; Arnold, Anne-Marie K; Wynne, Clive D L; Udell, Monique A R

    2015-01-01

    Previous research suggested that 16-week old dog pups, but not wolf pups, show attachment behaviour to a human caregiver. Attachment to a caregiver in dog pups has been demonstrated by differential responding to a caregiver compared to a stranger in the Ainsworth Strange Situation Test. We show here that 3-7 week old wolf pups also show attachment-like behaviour to a human caregiver as measured by preferential proximity seeking, preferential contact, and preferential greeting to a human caregiver over a human stranger in a modified and counterbalanced version of the Ainsworth Strange Situation Test. In addition, our results show that preferential responding to a caregiver over a stranger is only apparent following brief isolation. In initial episodes, wolf pups show no differentiation between the caregiver and the stranger; however, following a 2-min separation, the pups show proximity seeking, more contact, and more greeting to the caregiver than the stranger. These results suggest intensive human socialization of a wolf can lead to attachment--like responding to a human caregiver during the first two months of a wolf pup's life.

  4. Assessment of attachment behaviour to human caregivers in wolf pups (Canis lupus lupus).

    PubMed

    Hall, Nathaniel J; Lord, Kathryn; Arnold, Anne-Marie K; Wynne, Clive D L; Udell, Monique A R

    2015-01-01

    Previous research suggested that 16-week old dog pups, but not wolf pups, show attachment behaviour to a human caregiver. Attachment to a caregiver in dog pups has been demonstrated by differential responding to a caregiver compared to a stranger in the Ainsworth Strange Situation Test. We show here that 3-7 week old wolf pups also show attachment-like behaviour to a human caregiver as measured by preferential proximity seeking, preferential contact, and preferential greeting to a human caregiver over a human stranger in a modified and counterbalanced version of the Ainsworth Strange Situation Test. In addition, our results show that preferential responding to a caregiver over a stranger is only apparent following brief isolation. In initial episodes, wolf pups show no differentiation between the caregiver and the stranger; however, following a 2-min separation, the pups show proximity seeking, more contact, and more greeting to the caregiver than the stranger. These results suggest intensive human socialization of a wolf can lead to attachment--like responding to a human caregiver during the first two months of a wolf pup's life. PMID:25447510

  5. Depression, Dementia, and Social Supports.

    ERIC Educational Resources Information Center

    Esser, Sally R.; Vitaliano, Peter P.

    1988-01-01

    Reviews recent literature on the relationships among dementia, depression, and social support, emphasizing the diagnostic differentiation of dementia and depression, and the role of these three entities in elderly with cognitive impairment. Discusses dementia-like symptoms arising in depression and the coexistence of dementia and depression.…

  6. Quality of relationships as a predictor of psychosocial functioning in patients with dementia.

    PubMed

    Ball, Valdesha; Snow, A Lynn; Steele, Avila B; Morgan, Robert O; Davila, Jessica A; Wilson, Nancy; Kunik, Mark E

    2010-06-01

    This prospective cohort study evaluated the quality of caregiver and care-recipient relationship, or mutuality, and its relationship to psychosocial functioning among patients with dementia. Patients older than 59 years of age with newly diagnosed dementia between 2001 and 2004 were identified from the Michael E. DeBakey Veterans Affairs Medical Center in Houston, Texas. Among these patients, we identified patients who were under the care of a caregiver in the community setting for at least 8 hours per week. A Mutuality Scale was used to measure the quality of relationships between family caregivers and care recipients. The effect of relationship quality on the following dependent variables was assessed: depression, psychosis, pain, caregiver burden, social stimulation, and aggression. Based on the sample of 171 patients, high mutuality scores predicted decreased patient depression and caregiver burden. Increased mutuality scores also correlated with increased number and frequency of pleasant events (social stimulation) 4 months later. There was no relationship between total mutuality scores and patients' pain levels, psychotic symptoms, or aggression. Improvement in mutuality over 4-month periods was associated with increased social stimulation, decreased caregiver burden, and decreased aggression over time.

  7. Targeted case finding for dementia in primary care: Surrey Downs dementia diagnosis project.

    PubMed

    Kallumpuram, Sen; Sudhir Kumar, C T; Khan, Bilal; Gavins, Victoria; Khan, Aalia; Iliffe, Steve

    2015-01-01

    Currently less than half of the estimated number of people with dementia in England receive a formal diagnosis of dementia or have contact with specialist dementia services. Case finding focused on high risk groups may be an effective way to identify the undiagnosed. This joint Surrey Downs Clinical Commissioning Group and Surrey and Borders NHS Foundation Trust quality improvement project aimed to increase the rate of dementia diagnosis across Surrey Downs using specialist link nurses (SLNs). Thirty three GP surgeries covering the entire Surrey Downs area took part in the project. Individuals at high risk of developing dementia were identified from GP electronic disease registers, and were offered screening at their GP practices by SLNs, using a combination of mini cognitive test (Mini-Cog) and functional assessment questionnaire (FAQ). Suitable individuals who screened positive were seen by their GP and where appropriate referred to secondary care services for further evaluation. Based on the presence of risk factors, 6657 (11.9%) people were identified from a total population of 55 845 over 65s, and 1980 (29.7%) completed the screening assessment. Three hundred and fifty eight (18.1%) individuals screened positive and were referred to their GP, who referred 205 (57.2%) of them to the memory services for further assessment. Of those referred, 164 (80%) had a comprehensive specialist assessment. Forty one (20%) declined further assessment, and their GPs were informed. The mean age of the cohort who completed the comprehensive assessment was 82.3 years (SD=4.26), and were predominantly white and male. Fifty four (32.9%) had mild cognitive disorder (MCD), and 101 (61.6%) patients were diagnosed with dementia. The most common dementia was mixed type (43; 42.6%), followed by Alzheimer's dementia (32; 31.7%). The most common risk factor among patients with cognitive impairment (MCD or dementia) was hypertension (69; 44.5 %), followed by ischemic heart disease (64, 41

  8. Auditory hedonic phenotypes in dementia: A behavioural and neuroanatomical analysis.

    PubMed

    Fletcher, Phillip D; Downey, Laura E; Golden, Hannah L; Clark, Camilla N; Slattery, Catherine F; Paterson, Ross W; Schott, Jonathan M; Rohrer, Jonathan D; Rossor, Martin N; Warren, Jason D

    2015-06-01

    Patients with dementia may exhibit abnormally altered liking for environmental sounds and music but such altered auditory hedonic responses have not been studied systematically. Here we addressed this issue in a cohort of 73 patients representing major canonical dementia syndromes (behavioural variant frontotemporal dementia (bvFTD), semantic dementia (SD), progressive nonfluent aphasia (PNFA) amnestic Alzheimer's disease (AD)) using a semi-structured caregiver behavioural questionnaire and voxel-based morphometry (VBM) of patients' brain MR images. Behavioural responses signalling abnormal aversion to environmental sounds, aversion to music or heightened pleasure in music ('musicophilia') occurred in around half of the cohort but showed clear syndromic and genetic segregation, occurring in most patients with bvFTD but infrequently in PNFA and more commonly in association with MAPT than C9orf72 mutations. Aversion to sounds was the exclusive auditory phenotype in AD whereas more complex phenotypes including musicophilia were common in bvFTD and SD. Auditory hedonic alterations correlated with grey matter loss in a common, distributed, right-lateralised network including antero-mesial temporal lobe, insula, anterior cingulate and nucleus accumbens. Our findings suggest that abnormalities of auditory hedonic processing are a significant issue in common dementias. Sounds may constitute a novel probe of brain mechanisms for emotional salience coding that are targeted by neurodegenerative disease.

  9. [Diabetes mellitus and dementia].

    PubMed

    Kopf, D

    2015-05-01

    Diabetes mellitus, particularly type 2 diabetes, is a risk factor for dementia and this holds true for incident vascular dementia and Alzheimer's disease. Cerebrovascular complications of diabetes and chronic mild inflammation in insulin resistant states partly account for this increased risk. In addition, cellular resistance to the trophic effects of insulin on neurons and glial cells favor the accumulation of toxic metabolic products, such as amyloid and hyperphosphorylated tau protein (pTau). Weight loss frequently precedes overt cognitive symptoms of Alzheimer's disease. This results in an increased risk of hypoglycemic episodes in stable diabetic patients who are on suitably adjusted doses of oral insulin or insulinotropic antidiabetic drugs. In turn, hypoglycemic episodes may induce further damage in the vulnerable brains of type 2 diabetes patients. Patients with unexplained weight loss, hypoglycemic episodes and subjective memory complaints must be screened for dementia. Once dementia has been diagnosed the goals of diabetes management must be reevaluated as prevention of hypoglycemia becomes more important than tight metabolic control. As weight loss accelerates the rate of cognitive decline, nutritional goals must aim at stabilizing body weight. There is no available evidence on whether drug treatment of diabetes in middle-aged persons can help to prevent dementia; however, physical exercise, mental activity and higher education have preventive effects on the risk of dementia in later life. In addition, nutritional recommendations that are effective in preventing cardiovascular events have also been shown to reduce the risk of dementia.

  10. Mononuclear cells in dementia.

    PubMed

    Mandas, Antonella; Dessì, Sandra

    2014-04-20

    According to the World Health Organization statistics, dementias are the largest contributors to disease burden in advanced market economies, and the leading cause of disability and dependence among older people worldwide. So far, several techniques have been developed to identify dementias with reasonable accuracy while the patient is still alive, however, no single of them has proven to be ideal, especially if you need to have a satisfactory early diagnosis. Studies of early onset dementia are largely limited by the inaccessibility to direct examination of the living human brain: it appears therefore that for a correct biochemical and molecular characterization of dementias, potential surrogate tissues must be identified. In this context, peripheral blood mononuclear cells (PBMCs) appear particularly attractive because they can be obtained in a minimally invasive manner and can be easily analyzed. This review focuses on the most representative methodologies and strategies in detecting and quantifying fluctuation in dementia that are currently being developed. In addition it provides a comprehensive evaluation of the diagnostic sensitivity of PBMCs in patients with dementia. Finally, it discusses the data supporting the use of the determination of neutral lipids (NLs) in PBMCs by Oil Red O (ORO) staining, which is a minimally invasive, cheap, easy and fast procedure, as the promising method for early detection of dementia and to search for new effective treatments.

  11. Does the informal caregiver notice HIV associated mild cognitive impairment in people living with HIV?

    PubMed

    Murray, Kenneth J; Cummins, Denise; Batterham, Marijka; Trotter, Garry; Healey, Loretta; O'Connor, Catherine C

    2016-01-01

    HIV associated minor neurocognitive disorder (MND) may be difficult to identify as key signs and symptoms (S & S) may be due to other clinical conditions. Using a self-assessment booklet "HIV and associated MND" we recruited 123 people living with HIV (PLHIV) from three sites: two hospital HIV clinics and a sexual health clinic in Sydney, Australia. Patients may down play S & S. Caregivers may notice subtle changes. By including caregivers, we aimed to find whether the caregivers noticed S & S undetected by the PLHIV. This is a sub-study of a prospective observational multi-site study aimed to validate the usefulness of a patient self-assessment tool (HIV-associated MND booklet). Using the booklet, participants and their caregivers subsequently identified S & S of MND. Sixty-four per cent (79) did not nominate a caregiver to be contacted. Participants from 2 sites 44 (36%) nominated caregivers to be contacted. Twenty-five caregivers identified more than four S & S of MND. S & S reported most by caregivers related to participants being more tired at the end of the day (76%). Participants agreed (77%). Participants also reported that they found it more difficult to remember things such as taking medications or attending medical appointments (67%). The most agreed on symptom was the requirement for increased concentration to get the same things done (Kappa P 0.599 <0.001 and McNemar 0.289). For each question at least one caregiver identified a symptom when the PLHIV did not. Caregivers were more likely than participants to report irritability and communication difficulties. It is important to include caregivers when investigating PLHIV for MND, as caregivers may validate the experience of the patient, and may also be uniquely placed to identify S & S not otherwise identified. PMID:26489931

  12. Does the informal caregiver notice HIV associated mild cognitive impairment in people living with HIV?

    PubMed

    Murray, Kenneth J; Cummins, Denise; Batterham, Marijka; Trotter, Garry; Healey, Loretta; O'Connor, Catherine C

    2016-01-01

    HIV associated minor neurocognitive disorder (MND) may be difficult to identify as key signs and symptoms (S & S) may be due to other clinical conditions. Using a self-assessment booklet "HIV and associated MND" we recruited 123 people living with HIV (PLHIV) from three sites: two hospital HIV clinics and a sexual health clinic in Sydney, Australia. Patients may down play S & S. Caregivers may notice subtle changes. By including caregivers, we aimed to find whether the caregivers noticed S & S undetected by the PLHIV. This is a sub-study of a prospective observational multi-site study aimed to validate the usefulness of a patient self-assessment tool (HIV-associated MND booklet). Using the booklet, participants and their caregivers subsequently identified S & S of MND. Sixty-four per cent (79) did not nominate a caregiver to be contacted. Participants from 2 sites 44 (36%) nominated caregivers to be contacted. Twenty-five caregivers identified more than four S & S of MND. S & S reported most by caregivers related to participants being more tired at the end of the day (76%). Participants agreed (77%). Participants also reported that they found it more difficult to remember things such as taking medications or attending medical appointments (67%). The most agreed on symptom was the requirement for increased concentration to get the same things done (Kappa P 0.599 <0.001 and McNemar 0.289). For each question at least one caregiver identified a symptom when the PLHIV did not. Caregivers were more likely than participants to report irritability and communication difficulties. It is important to include caregivers when investigating PLHIV for MND, as caregivers may validate the experience of the patient, and may also be uniquely placed to identify S & S not otherwise identified.

  13. Diagnosing dementia in Dutch general practice: a qualitative study of GPs’ practices and views

    PubMed Central

    Prins, Agnes; Hemke, Feia; Pols, Jeannette; van Charante, Eric P Moll

    2016-01-01

    Background GPs play an important role in recognising the symptoms of dementia; however, little is known about how they perceive their actual and future role in diagnosing dementia. Aim To explore Dutch GPs’ perceptions of their current position in diagnosing dementia, their reasons for referral to secondary care, and views on the future diagnostic role of GPs. Design and setting A qualitative study among Dutch GPs. Method Eighteen GPs participated in a semi-structured interview that ranged from 20 to 60 minutes. Interviews were transcribed verbatim and thematic analysis was performed. Results GPs reported that their role in the diagnostic phase of identifying people with suspected dementia is limited to recognising cognitive problems and deciding whether a patient needs to be referred for further investigation, or whether care could be organised without specialist diagnosis. GPs indicated that they were likely to refer patients if patients/caregivers or dementia case managers requested it, or if they thought it could have consequences for treatment. Typically, GPs do not see the need for referral when their patients are very old and declining slowly. GPs would welcome a more prominent role in diagnosing dementia in their own practice. Conclusion Diagnosing dementia involves a complex balance between patient and carer preferences, the consequences for treatment and care, and the burden of referral. Dutch GPs favour a stronger involvement in diagnosing dementia provided that both resources and diagnostic algorithms are improved. PMID:27114209

  14. [Psychiatric distress and related risk factors of family caregivers who care for the demented elderly at home].

    PubMed

    Doi, Y; Ogata, K

    2000-01-01

    The objectives of our study were to assess psychiatric distress of caregivers who had been caring for the demented elderly at home and to examine the association of caregivers' psychiatric distress with putative risk factors. Subjects were 294 caregivers living in Amakusa, Kumamoto Prefecture of Japan, whose spouses, parents or other family members were registered at Amakusa Public Health Center as demented elderly. In 1998, Survey on Caregivers' Mental Health was conducted using the General Health Questionnaire (GHQ12) as a measurement for general psychiatric state of caregivers. Two hundred and eighty-two caregivers responded to interviews with complaints of the following psychological symptoms: feelings of unhappiness (55.7%), of stress (41.8%), insomnia (29.4%) and depressed mood (29.1%). Seventy-six caregivers (27.2%) were identified as being above the cut-off point 4 for psychiatric distress caseness. Multivariate logistic regression analysis indicated caregivers' psychiatric distress was statistically associated with caregivers' age, the caregivers' perception of the severity of dementia, the number of years devoted to caregiving at home and perceived financial state. Being 50 to 69 years (OR = 0.37, 95% CI: 0.17-0.81) and being 70 years or older (OR = 0.35, 95% CI: 0.14-0.83) were negatively associated with caseness as compared to being 20 to 49 years. Caseness was positively related to the severity of the elderly's demented state (OR = 6.93, 95% CI: 1.99-24.19), 1 year to 2 years devoted to caregiving at home (OR = 3.26, 95% CI: 1.02-10.38), no family or social support (OR = 2.99, 95% CI: 1.12-7.96) and lower perceived financial state (always OR = 6.99, 95% CI: 2.77-17.64, sometimes OR = 2.41, 95% CI: 1.19-4.85). Reduction of caregivers' psychiatric distress is important for not merely the enhancement of quality of care for demented elders and caregivers' life but for the prevention of elder abuse or neglect. Our study suggests that a comprehensive

  15. Lifestyle-related factors in predementia and dementia syndromes.

    PubMed

    Solfrizzi, Vincenzo; Capurso, Cristiano; D'Introno, Alessia; Colacicco, Anna Maria; Santamato, Andrea; Ranieri, Maurizio; Fiore, Pietro; Capurso, Antonio; Panza, Francesco

    2008-01-01

    Cognitive decline and dementia have a deep impact on the health and quality of life of older subjects and their caregivers. Since the therapeutic options currently available have demonstrated limited efficacy, the search for preventive strategies for cognitive decline and dementia are mandatory. A possible role of lifestyle-related factors was recently proposed for age-related changes of cognitive function, predementia syndromes and the cognitive decline of degenerative (Alzheimer's disease [AD]) or vascular origin. At present, cumulative evidence suggests that vascular risk factors may be important in the development of mild cognitive impairment (MCI), dementia and AD. Moderate alcohol drinking has been proposed as a protective factor against MCI and dementia in several longitudinal studies, but contrasting findings also exist. The Mediterranean diet could therefore be an interesting model with which to further study the association between dietary patterns and cognitive functioning, given the suggested role of many components of this diet (monounsaturated fatty acids, polyunsaturated fatty acids, cereals and red wine) in contrasting cognitive impairment and dementia. The association between low education and predementia and dementia syndromes is supported by the majority of studies, but very few studies have investigated whether this association may be attributed with lifestyle factors that covary with education. Studies in the literature seem to identify in physical exercise one promising strategy in decreasing cognitive decline, but some of the limitations of these studies do not allow us to draw definite conclusions. At present, in older subjects, healthy diets, antioxidant supplements, the prevention of nutritional deficiencies, and moderate physical activity could be considered the first line of defense against the development and progression of predementia and dementia syndromes. However, in most cases, these were only observational studies, and results are

  16. "I Do the Best I Can": Caregivers' Perceptions of Informal Caregiving for Older Adults in Belize

    ERIC Educational Resources Information Center

    Vroman, Kerryellen; Morency, Jamme

    2011-01-01

    In this first study of informal caregiving for older adults in Belize, 29 caregivers described their experiences of caregiving, how they perceived and managed the role, and what critical resources they needed. The three main themes identified in the caregiver interviews were "the experiences of caregivers, the rewards of caregiving, and navigating…

  17. Dementia-friendly neighbourhoods.

    PubMed

    Duffin, Christian

    2014-03-01

    Six research projects that will improve understanding of dementia are to receive £20 million in funding from the UK government. The projects, which will be overseen by the National Institute for Health Research and the Economic and Social Research Council, include investigations into creating dementia-friendly neighbourhoods; the lifestyle changes that can reduce the risk of developing the condition; training care home staff to support patients who become agitated; improving predictions of the future financial costs of dementia; living well with the condition; and the effects of visual aids on wellbeing and quality of life.

  18. [Esquirol and dementia].

    PubMed

    Albou, Philippe

    2012-01-01

    Jean Etienne Dominique Esquirol (1772-1840), after Pinel (1745-1826), stated precisely the symptoms of dementia according to the new medical definition of the word: a disease including all the states of intellectual weakness for various reasons. For example Esquirol clearly distinguished dementia from mania--that is to say our present psychoses--, and also from mental deficiency. In the same time Esquirol became more and more conscious, from 1814 (cf. his contributions to the Dictionnaire des sciences médicales, in 58 volumes, dir. Panckoucke) and 1838 (his famous work Des maladies mentales), of the very nature of senile insanity compared with other kinds of dementia.

  19. Ethical Dimensions and Filial Caregiving

    PubMed Central

    McCarty, Ellen F.; Hendricks, Constance S.; Hendricks, Denisha L.; McCarty, Kathleen M.

    2013-01-01

    The elderly are growing rapidly today as life expectancy increases. As this longevity has increased, so has the need for filial caregivers. While much has been written about caregiving stress, little has been written regarding the ethical dimensions of filial responsibility and daughter and son caregivers’ perceptions of responsibility and moral demands. This paper will address the concept of family caregiving and contextual family characteristics. Family characteristics will expand awareness of the interrelationship value between the nature of the prior filial relationship, image of caregiving, and ethical views that underscore acceptance of the filial obligation. An explanation of both the interview process and selected measurements that speak to ethical perspective, sense of caregiving image, and expectations of filial caregiving will also be addressed. Therefore, the purpose of this paper is to elucidate how adult children may be helped in an anticipatory and proactive manner as more and more adult children take on parent care for longer durations of time. PMID:23459516

  20. REMCARE: Pragmatic Multi-Centre Randomised Trial of Reminiscence Groups for People with Dementia and their Family Carers: Effectiveness and Economic Analysis

    PubMed Central

    Orrell, Martin; Bruce, Errollyn; Edwards, Rhiannon T.; Hounsome, Barry; Keady, John; Orgeta, Vasiliki; Rees, Janice

    2016-01-01

    Background Joint reminiscence groups, involving people with dementia and family carers together, are popular, but the evidence-base is limited. This study aimed to assess the effectiveness and cost-effectiveness of joint reminiscence groups as compared to usual care. Methods This multi-centre, pragmatic randomised controlled trial had two parallel arms: intervention group and usual-care control group. A restricted dynamic method of randomisation was used, with an overall allocation ratio of 1:1, restricted to ensure viable sized intervention groups. Assessments, blind to treatment allocation, were carried out at baseline, three months and ten months (primary end-point), usually in the person's home. Participants were recruited in eight centres, mainly through NHS Memory Clinics and NHS community mental health teams. Included participants were community resident people with mild to moderate dementia (DSM-IV), who had a relative or other care-giver in regular contact, to act as informant and willing and able to participate in intervention. 71% carers were spouses. 488 people with dementia (mean age 77.5)were randomised: 268 intervention, 220 control; 350 dyads completed the study (206 intervention, 144 control). The intervention evaluated was joint reminiscence groups (with up to 12 dyads) weekly for twelve weeks; monthly maintenance sessions for further seven months. Sessions followed a published treatment manual and were held in a variety of community settings. Two trained facilitators in each centre were supported by volunteers. Primary outcome measures were self-reported quality of life for the person with dementia (QoL-AD), psychological distress for the carer (General Health Questionnaire, GHQ-28). Secondary outcome measures included: autobiographical memory and activities of daily living for the person with dementia; carer stress for the carer; mood, relationship quality and service use and costs for both. Results The intention to treat analysis (ANCOVA

  1. Predictors of Inpatient Utilization among Veterans with Dementia

    PubMed Central

    Godwin, Kyler M.; Morgan, Robert O.; Walder, Annette; Bass, David M.; Judge, Katherine S.; Wilson, Nancy; Snow, A. Lynn; Kunik, Mark E.

    2014-01-01

    Dementia is prevalent and costly, yet the predictors of inpatient hospitalization are not well understood. Logistic and negative binomial regressions were used to identify predictors of inpatient hospital utilization and the frequency of inpatient hospital utilization, respectively, among veterans. Variables significant at the P < 0.15 level were subsequently analyzed in a multivariate regression. This study of veterans with a diagnosis of dementia (n = 296) and their caregivers found marital status to predict hospitalization in the multivariate logistic model (B = 0.493, P = 0.029) and personal-care dependency to predict hospitalization and readmission in the multivariate logistic model and the multivariate negative binomial model (B = 1.048, P = 0.007, B = 0.040, and P = 0.035, resp.). Persons with dementia with personal-care dependency and spousal caregivers have more inpatient admissions; appropriate care environments should receive special care to reduce hospitalization. This study was part of a larger clinical trial; this trial is registered with ClinicalTrials.gov NCT00291161. PMID:24982674

  2. [Vascular factors in dementia].

    PubMed

    Bidzan, Leszek

    2005-01-01

    Cerebrovascular factors are a common cause of dementia or contribute to cognitive decline in other dementias. Studies showing that cerebrovascular factors are the risk factors for neurodegenerative dementias, especially Alzheimer's disease. Practically all neurodegenerative dementias have a vascular component that reduces cerebral perfusion and has great impact on the clinical picture. Recent data support the view that the neurodegenerative process is caused by cerebrovascular mechanisms. The results showed that patients with vascular cognitive impairment have a typical clinical picture. Various important non-cognitive features are caused by cerebrovascular factors and are associated with a more rapid course of illness. On the other hand the term vascular diseases or cerebrovascular factors include a variety of vascular pathologies. PMID:16358596

  3. [Dementia and otorhinolaryngologic practice].

    PubMed

    Eichhorn, S; Hesse, G; Laubert, A

    2014-09-01

    The interaction between sensorial registration of peripheral stimuli and their central cognitive processing is not yet understood. The role of sensory deficits such as olfactory deterioration or hearing loss in the development of dementia is currently a focus of concern, with hopes of finding new diagnostic aspects and therapeutic options for multimodal treatment concepts in patients with dementia. The expertise of ENT specialists in the diagnostic and therapeutic fields of dysphagia, vestibular dysfunction and olfactory or hearing loss could make an important contribution to the development of future strategies for dealing with dementia. In this report we present up-to-date basic knowledge and ENT-specific aspects relating to the diagnostics and treatment of dementia. PMID:25103990

  4. Young-Onset Dementia

    PubMed Central

    Kuruppu, Dulanji K; Matthews, Brandy R

    2014-01-01

    Young-onset dementia (YOD) is an neurological syndrome that affects behavior and cognition of patients younger than 65 years of age. Although frequently misdiagnosed, a systematic approach, reliant upon attainment of detailed medical history, collateral history from an informant, neuropsychological testing, laboratory studies, and neuroimaging, may facilitate earlier and more accurate diagnosis with subsequent intervention. The differential diagnosis of YOD is extensive and includes early-onset forms of adult neurodegenerative conditions including Alzheimer's disease, vascular dementia, frontotemporal dementia, Lewy body dementias, Huntington's disease, and prion disease. Late-onset forms of childhood neurodegenerative conditions may also present as YOD and include mitochondrial disorders, lysosomal storage disorders, and leukodystrophies. Potentially reversible etiologies including inflammatory disorders, infectious diseases, toxic/metabolic abnormalities, transient epileptic amnesia, obstructive sleep apnea, and normal pressure hydrocephalus also represent important differential diagnostic considerations in YOD. This review will present etiologies, diagnostic strategies, and options for management of YOD with comprehensive summary tables for clinical reference. PMID:24234358

  5. Sociopathic behavior and dementia.

    PubMed

    Cipriani, Gabriele; Borin, Gemma; Vedovello, Marcella; Di Fiorino, Andrea; Nuti, Angelo

    2013-06-01

    The maintenance of appropriate social behavior is a very complex process with many contributing factors. Social and moral judgments rely on the proper functioning of neural circuits concerned with complex cognitive and emotional processes. Damage to these systems may lead to distinct social behavior abnormalities. When patients present with dysmoral behavior for the first time, as a change from a prior pervasive pattern of behavior, clinicians need to consider a possible, causative brain disorder. The aim is to explore sociopathy as a manifestation of dementia. We searched electronic databases and key journals for original research and review articles on sociopathy in demented patients using the search terms "sociopathy, acquired sociopathy, sociopathic behavior, dementia, and personality". In conclusion, dementia onset may be heralded by changes in personality including alteration in social interpersonal behavior, personal regulation, and empathy. The sociopathy of dementia differs from antisocial/psychopathic personality disorders. PMID:23180469

  6. Personality change in dementia.

    PubMed

    Aitken, L; Simpson, S; Burns, A

    1999-09-01

    This study examined the prevalence and nature of personality change in 99 patients with dementia of the Alzheimer type and multi-infarct dementia. Personality was assessed using an informant-rated inventory of the patient's personality before and after the onset of dementia, with the difference equating to a change in personality. Personality characteristics were related to the patients' age and sex, duration of illness, degree of cognitive impairment, the presence of a grasp reflex, and extrapyramidal signs. Personality change was found to be almost universal and negative in nature and was particularly associated with severity of cognitive impairment, longer duration of illness, and neurological signs. The findings reflect those from other studies and emphasize the biological basis of personality changes in dementia.

  7. Dementia - home care

    MedlinePlus

    ... help improve communication skills and prevent wandering. Calming music may reduce wandering and restlessness, ease anxiety, and improve sleep and behavior. People with dementia should have their eyes and ...

  8. Preventing and diagnosing dementia.

    PubMed

    Keenan, Bernie; Jenkins, Catharine; Ginesi, Laura

    While dementia is an umbrella term for a range of degenerative brain disorders, many share similar presentations. Nurses are ideally placed to identify those at risk and empower them to access treatment and plan and prepare for their future needs--as such, they need up-to-date knowledge of the signs and symptoms of the different types of dementia to identify risk factors and make an informed diagnosis. This article, the third in a four-part series on dementia, examines the risk factors, signs, symptoms and diagnosis of dementia, as well as outlining lifestyle factors such as diet and exercise that may help to prevent the development of the condition. PMID:27544960

  9. Dementia and driving

    MedlinePlus

    ... has dementia , deciding when they can no longer drive may be difficult. They may react in different ... that the person may not be able to drive safely, such as: Forgetting recent events Mood swings ...

  10. Dementia - daily care

    MedlinePlus

    ... recs.pdf . Accessed on June 27, 2016. Budson AE, Solomon PR. Life adjustments for memory loss, Alzheimer's disease, and dementia. In: Budson AE, Solomon PR, eds. Memory Loss, Alzheimer's Disease, and ...

  11. Collaborative transdisciplinary team approach for dementia care

    PubMed Central

    Galvin, James E; Valois, Licet; Zweig, Yael

    2015-01-01

    SUMMARY Alzheimer's disease (AD) has high economic impact and places significant burden on patients, caregivers, providers and healthcare delivery systems, fostering the need for an evaluation of alternative approaches to healthcare delivery for dementia. Collaborative care models are team-based, multicomponent interventions that provide a pragmatic strategy to deliver integrated healthcare to patients and families across a wide range of populations and clinical settings. Healthcare reform and national plans for AD goals to integrate quality care, health promotion and preventive services, and reduce the impact of disease on patients and families reinforcing the need for a system-level evaluation of how to best meet the needs of patients and families. We review collaborative care models for AD and offer evidence for improved patient- and family-centered outcomes, quality indicators of care and potential cost savings. PMID:25531688

  12. Frontotemporal dementia: diagnosis, deficits and management

    PubMed Central

    Bott, Nicholas T; Radke, Anneliese; Stephens, Melanie L; Kramer, Joel H

    2016-01-01

    Summary Frontotemporal dementia (FTD) is a progressive neurologic syndrome with diverse clinical presentations and attendant underlying pathologies. Psychiatric prodrome, neuropsychiatric symptoms and language difficulties are common in FTD, but the diversity of presentation raises unique diagnostic challenges that can significantly impact patient care and counsel for caregivers regarding clinical status and prognosis. While neuropsychiatric symptom measures are helpful, more sensitive assessments delineating the specific behavioral and linguistic deficits accompanying FTD are needed. Comprehensive clinical assessment in combination with evaluation of language, socio-emotional functioning, cognition and neuroimaging aid in accurate and early diagnosis and treatment planning. In what follows, we review each of the FTD syndromes, highlight current research investigating the cognitive, behavioral and socio-emotional deficits observed with this disease, address common diagnostic challenges and summarize best practices associated with management of FTD. PMID:25531687

  13. Frontotemporal dementia: diagnosis, deficits and management.

    PubMed

    Bott, Nicholas T; Radke, Anneliese; Stephens, Melanie L; Kramer, Joel H

    2014-01-01

    Frontotemporal dementia (FTD) is a progressive neurologic syndrome with diverse clinical presentations and attendant underlying pathologies. Psychiatric prodrome, neuropsychiatric symptoms and language difficulties are common in FTD, but the diversity of presentation raises unique diagnostic challenges that can significantly impact patient care and counsel for caregivers regarding clinical status and prognosis. While neuropsychiatric symptom measures are helpful, more sensitive assessments delineating the specific behavioral and linguistic deficits accompanying FTD are needed. Comprehensive clinical assessment in combination with evaluation of language, socio-emotional functioning, cognition and neuroimaging aid in accurate and early diagnosis and treatment planning. In what follows, we review each of the FTD syndromes, highlight current research investigating the cognitive, behavioral and socio-emotional deficits observed with this disease, address common diagnostic challenges and summarize best practices associated with management of FTD. PMID:25531687

  14. [Is frontotemporal dementia a disease of identity?].

    PubMed

    Lebert, Florence

    2009-06-01

    Patients with frontotemporal dementia (FTD) have major behavioral troubles and a loss of insight. These factors contribute to reduce self-awareness and recognition of identify of others and by others. Autobiographical amnesia, loss of insight and executive dysfunctions are the major reasons of vulnerable "self" in FTD. Mind representation deficits, decrease of perception of emotions and semantic amnesia contribute to reduced recognition of the relative's identity. Alterations of body expressions, social disinhibition, changes in social and religious values decrease the recognition of patient's identity by the relatives. Different psychological components of identity are modified by the FTD such as feeling of unity, of consistency, of temporality and of affiliation. The fact that brain lesions of FTD are focalized can contribute to understand the biological knowledge of "identity". To know the neurological substrate of alterations of identity, this can help to improve the empathy of the suffering caregivers for the patient. PMID:19473950

  15. El Portal Latino Alzheimer's Project: model program for Latino caregivers of Alzheimer's disease-affected people.

    PubMed

    Aranda, Maria P; Villa, Valentine M; Trejo, Laura; Ramírez, Rosa; Ranney, Martha

    2003-04-01

    The article describes the El Portal Latino Alzheimer's Project--a dementia-specific outreach and services program targeting Latino caregivers in the Los Angeles County area. The project is an example of an interorganizational community-based collaborative developed to provide an array of coordinated, ethnic-sensitive services to Latino dementia-affected adults and their family caregivers, using culturally specific outreach and services delivery strategies. Results of an evaluation of service utilization indicate a reduction in barriers to care and an increase in services utilization. Los Angeles County provides a natural urban laboratory to study the special needs and circumstances of older Latinos dealing with chronic and debilitating illnesses. Implications for social work practice are discussed.

  16. Neuroimaging and dementia

    SciTech Connect

    Benson, D.F.

    1986-05-01

    The tremendous increase in dementia has created a need for improved diagnostic techniques, and each of the newly established brain imaging techniques has been applied to this problem. Several, particularly computerized tomography (CT), magnetic resonance imaging (MRI), and isotope emission tomography, have proved valuable. Each procedure has strengths--specific disorders that can be diagnosed--and weaknesses--types of dementia that cannot be demonstrated.

  17. The University of California at Los Angeles Alzheimer's and Dementia Care program for comprehensive, coordinated, patient-centered care: preliminary data.

    PubMed

    Reuben, David B; Evertson, Leslie C; Wenger, Neil S; Serrano, Katherine; Chodosh, Joshua; Ercoli, Linda; Tan, Zaldy S

    2013-12-01

    Dementia is a chronic disease that requires medical and social services to provide high-quality care and prevent complications. As a result of time constraints in practice, lack of systems-based approaches, and poor integration of community-based organizations (CBOs), the quality of care for dementia is poorer than that for other diseases that affect older persons. The University of California at Los Angeles (UCLA) Alzheimer's and Dementia Care (UCLA ADC) program partners with CBOs to provide comprehensive, coordinated, patient-centered care for individuals with Alzheimer's disease and other dementias. The goals of the program are to maximize function, independence, and dignity; minimize caregiver strain and burnout; and reduce unnecessary costs. The UCLA ADC program consists of five core components: recruitment and a dementia registry, structured needs assessments of individuals in the registry and their caregivers, creation and implementation of individualized dementia care plans based on needs assessments and input from the primary care physicians, monitoring and revising care plans as needed, and around-the-clock access for assistance and advice. The program uses a comanagement model with a nurse practitioner Dementia Care Manager working with primary care physicians and CBOs. Based on the first 150 individuals served, the most common recommendations in the initial care plans were referrals to support groups (73%) and Alzheimer's Association Safe Return (73%), caregiver training (45%), and medication adjustment (41%). The program will be evaluated on its ability to achieve the triple aim of better care for individuals, better health for populations, and lower costs.

  18. Use of social commitment robots in the care of elderly people with dementia: a literature review.

    PubMed

    Mordoch, Elaine; Osterreicher, Angela; Guse, Lorna; Roger, Kerstin; Thompson, Genevieve

    2013-01-01

    Globally, the population of elderly people is rising with an increasing number of people living with dementias. This trend is coupled with a prevailing need for compassionate caretakers. A key challenge in dementia care is to assist the person to sustain communication and connection to family, caregivers and the environment. The use of social commitment robots in the care of people with dementia has intriguing possibilities to address some of these care needs. This paper discusses the literature on the use of social commitment robots in the care of elderly people with dementia; the contributions to care that social commitment robots potentially can make and the cautions around their use. Future directions for programs of research are identified to further the development of the evidence-based knowledge in this area.

  19. Thinking about my grandparent: How dementia influences adolescent grandchildren's perceptions of their grandparents.

    PubMed

    Celdrán, Montserrat; Villar, Feliciano; Triadó, Carme

    2014-04-01

    The study aims to examine how grandchildren perceive their grandparents who suffer from dementia. Grandchildren living in Barcelona, Spain, participated in the study (n=145). The data, based on qualitative information extracted from three incomplete questions (referring to the grandparent's best and worst qualities, and to the best memory that the participant has of this grandparent), showed that grandchildren mentioned the same best and worst qualities of the grandparent as those reported in other normative studies. Nevertheless, dementia had a strong influence on the responses regarding the grandparent's worst qualities, which reflected characteristics of the disease rather than personal characteristics. Regarding the best memories, participants remembered their grandparent's roles as funseekers and caregivers in the past, emphasizing the importance of this older person during their childhood. In the discussion, we stress the importance of the figure of the grandchild in intervention plans for dementia and the role that grandchildren can play in maintaining the identity of the person with dementia. PMID:24655668

  20. Caring for Alzheimer's Patients. Supplement to Caregivers' Practical Help to Assist Those Who Care for Patients with Dementia Related Diseases = El Cuidado de los Pacientes de Alzheimer. Suplemento de Ayuda Practica para las Personas Encargadas para Ayudar a los que Cuidan a Pacientes que Sufren de Enfermedades Relacionadas con la Demencia.

    ERIC Educational Resources Information Center

    New York State Office for the Aging, Albany.

    This manual is intended for caregivers of homebound patients with Alzheimer's disease and others who are mentally impaired. It deals with the nature of Alzheimer's, the decline in a patient's abilities, information about available services, and legal and financial issues. The manual provides guidance and suggestions to lessen the daily stress…

  1. Caring for the Caregivers: Patterns of Organizational Caregiving.

    ERIC Educational Resources Information Center

    Kahn, William A.

    1993-01-01

    Offers a system-level perspective on job burnout among human service workers, focusing on their internal networks of caregiving relationships. Defines and illustrates five recurring caregiving patterns characterizing agency members' relationships, ranging from supervisor support to mutual withdrawal between supervisors and subordinates. Discusses…

  2. [Post Stroke Dementia].

    PubMed

    Ihara, Masafumi

    2016-07-01

    Post-stroke dementia (PSD) is a clinical entity that encompasses all types of dementia following an index stroke. Current evidence suggests that 25-30% of ischemic stroke survivors develop immediate or delayed vascular cognitive impairment or vascular dementia. The type of stroke can be either ischemic, hemorrhagic or hypoperfusive. There are multiple risk factors for PSD including older age, family history, genetic variants, low educational status, vascular comorbidities, prior transient ischemic attack or recurrent stroke and depressive illness. Pre-stroke dementia refers to the occurrence of cognitive impairment before the index stroke, which may be caused by a vascular burden as well as insidious neurodegenerative changes. Neuroimaging determinants of dementia after stroke include silent brain infarcts, white matter changes, lacunar infarcts and medial temporal lobe atrophy. Published clinical trials have not been promising and there is little information on whether PSD can be prevented using pharmacological agents. Control of vascular disease risk and prevention of recurrent strokes are key to reducing the burden of cognitive decline and post-stroke dementia. Modern imaging and analysis techniques will help to elucidate the mechanism of PSD and establish better treatment. PMID:27395459

  3. Early Dementia Screening

    PubMed Central

    Panegyres, Peter K.; Berry, Renee; Burchell, Jennifer

    2016-01-01

    As the population of the world increases, there will be larger numbers of people with dementia and an emerging need for prompt diagnosis and treatment. Early dementia screening is the process by which a patient who might be in the prodromal phases of a dementing illness is determined as having, or not having, the hallmarks of a neurodegenerative condition. The concepts of mild cognitive impairment, or mild neurocognitive disorder, are useful in analyzing the patient in the prodromal phase of a dementing disease; however, the transformation to dementia may be as low as 10% per annum. The search for early dementia requires a comprehensive clinical evaluation, cognitive assessment, determination of functional status, corroborative history and imaging (including MRI, FDG-PET and maybe amyloid PET), cerebrospinal fluid (CSF) examination assaying Aβ1–42, T-τ and P-τ might also be helpful. Primary care physicians are fundamental in the screening process and are vital in initiating specialist investigation and treatment. Early dementia screening is especially important in an age where there is a search for disease modifying therapies, where there is mounting evidence that treatment, if given early, might influence the natural history—hence the need for cost-effective screening measures for early dementia. PMID:26838803

  4. Autophagy in dementias.

    PubMed

    Kragh, Christine Lund; Ubhi, Kiren; Wyss-Coray, Tony; Wyss-Corey, Tony; Masliah, Eliezer

    2012-01-01

    Dementias are a varied group of disorders typically associated with memory loss, impaired judgment and/or language and by symptoms affecting other cognitive and social abilities to a degree that interferes with daily functioning. Alzheimer's disease (AD) is the most common cause of a progressive dementia, followed by dementia with Lewy bodies (DLB), frontotemporal dementia (FTD), (VaD) and HIV-associated neurocognitive disorders (HAND). The pathogenesis of this group of disorders has been linked to the abnormal accumulation of proteins in the brains of affected individuals, which in turn has been related to deficits in protein clearance. Autophagy is a key cellular protein clearance pathway with proteolytic cleavage and degradation via the ubiquitin-proteasome pathway representing another important clearance mechanism. Alterations in the levels of autophagy and the proteins associated with the autophagocytic pathway have been reported in various types of dementias. This review will examine recent literature across these disorders and highlight a common theme of altered autophagy across the spectrum of the dementias. PMID:22150925

  5. Young onset dementia.

    PubMed

    Draper, B; Withall, A

    2016-07-01

    Young onset dementia (YOD), where symptoms of dementia have an onset before the age of 65, has become more prominent due to the population increase from the Baby Boomer generation. This clinical perspective examines key issues in the assessment, diagnosis and management of YOD. Challenges in the assessment and diagnosis of YOD are partly due to the diverse range of types of YOD, where degenerative dementias are less common and secondary dementias more common than in late onset dementia. Early symptoms are broad and include depression, behavioural change, neurological disorders, systemic disorders and mild cognitive impairment (MCI). Perceived diagnostic delay may result in frustration and distress in people with YOD and their families. Chronic depression and MCI are associated with longer time to diagnosis, and in these situations, clinicians need to establish appropriate review processes and communicate clearly. A diagnosis of YOD may have marked consequences for a younger person, including early retirement, financial impacts and the psychological challenge of coming to grips with cognitive decline. Partners, children and other supporters often have unmet needs, feel burdened by care and are at high risk of physical and emotional consequences. Concerns about the heritability of dementia may add to family distress. Recent community service developments in Australia for YOD are outlined and the challenges of residential care described. PMID:27405890

  6. Update on Frontotemporal Dementia

    PubMed Central

    Arvanitakis, Zoe

    2013-01-01

    Background Frontotemporal dementia has recently been recognized as a common cause of young-onset dementia. Objective To review the current approach to the clinical evaluation, understanding of pathophysiology, and management of frontotemporal dementia. Results Two main clinical presentations are: 1) behavioral, with impulsive behaviors and disinhibition, change in personality such as apathy and indifference, and poor judgment, and 2) language, with a non-fluent aphasia with anomia (primary progressive aphasia), or a fluent aphasia with early loss of word meaning (semantic dementia). The differential diagnosis includes other neurodegenerative dementias, vascular and other conditions affecting the brain, and psychiatric diseases. Investigations, including neuropsychological testing, and structural and functional brain imaging, may help support the diagnosis. Recent advances in understanding the pathophysiology have suggested that most cases have underlying ubiquitin-positive inclusions, while some have tau-positive inclusions. Genetic mutations, particularly on chromosome 17 in the tau or progranulin genes, have been identified. Management includes a trial of symptomatic medications and a multi-faceted approach, including environmental modification and long-term care planning. Conclusion Medical researchers studying frontotemporal dementia aim to identify disease-modifying drugs and, ultimately, a cure for this devastating disease. PMID:20065792

  7. Availability and Primary Health Care Orientation of Dementia-Related Services in Rural Saskatchewan, Canada

    PubMed Central

    Morgan, Debra G.; Kosteniuk, Julie G.; Stewart, Norma J.; O’Connell, Megan E.; Kirk, Andrew; Crossley, Margaret; Dal Bello-Haas, Vanina; Forbes, Dorothy; Innes, Anthea

    2015-01-01

    Community-based services are important for improving outcomes for individuals with dementia and their caregivers. This study examined: (a) availability of rural dementia-related services in the Canadian province of Saskatchewan, and (b) orientation of services toward six key attributes of primary health care (i.e., information/education, accessibility, population orientation, coordinated care, comprehensiveness, quality of care). Data were collected from 71 rural Home Care Assessors via cross-sectional survey. Basic health services were available in most communities (e.g., pharmacists, family physicians, palliative care, adult day programs, home care, long-term care facilities). Dementia-specific services typically were unavailable (e.g., health promotion, counseling, caregiver support groups, transportation, week-end/night respite). Mean scores on the primary health care orientation scales were low (range 12.4 to 17.5/25). Specific services to address needs of rural individuals with dementia and their caregivers are limited in availability and fit with primary health care attributes. PMID:26496646

  8. Self-perceived competence among medical residents in skills needed to care for patients with advanced dementia versus metastatic cancer.

    PubMed

    Manu, Erika; Marks, Adam; Berkman, Cathy S; Mullan, Patricia; Montagnini, Marcos; Vitale, Caroline A

    2012-06-01

    To examine medical residents' perceived competence in caring for patients with dementia we conducted an online survey of all 120 second, third and fourth-year residents in Internal Medicine, Medicine/Pediatrics, and Family Medicine at University of Michigan. A structured survey elicited residents' training, experience, confidence, and perceived career needs for skills in estimating prognosis, symptom management, and communication in caring for patients with dementia, compared to patients with metastatic cancer. Among the 61 (51 %) respondents, a majority report lower confidence in assessing prognosis and eliciting treatment wishes in patients with dementia (vs. metastatic cancer), and in performing skills integral to the care of patients with dementia, including the ability to assess caregiver needs, decisional capacity, advise on place of care, and manage agitation, despite viewing these skills as important to their future careers. These findings support the need for enhanced education on optimal care of patients with advanced dementia.

  9. Self-perceived competence among medical residents in skills needed to care for patients with advanced dementia versus metastatic cancer.

    PubMed

    Manu, Erika; Marks, Adam; Berkman, Cathy S; Mullan, Patricia; Montagnini, Marcos; Vitale, Caroline A

    2012-06-01

    To examine medical residents' perceived competence in caring for patients with dementia we conducted an online survey of all 120 second, third and fourth-year residents in Internal Medicine, Medicine/Pediatrics, and Family Medicine at University of Michigan. A structured survey elicited residents' training, experience, confidence, and perceived career needs for skills in estimating prognosis, symptom management, and communication in caring for patients with dementia, compared to patients with metastatic cancer. Among the 61 (51 %) respondents, a majority report lower confidence in assessing prognosis and eliciting treatment wishes in patients with dementia (vs. metastatic cancer), and in performing skills integral to the care of patients with dementia, including the ability to assess caregiver needs, decisional capacity, advise on place of care, and manage agitation, despite viewing these skills as important to their future careers. These findings support the need for enhanced education on optimal care of patients with advanced dementia. PMID:22477667

  10. ACNP White Paper: Update on Use of Antipsychotic Drugs in Elderly Persons with Dementia

    PubMed Central

    Jeste, Dilip V.; Blazer, Dan; Casey, Daniel; Meeks, Thomas; Salzman, Carl; Schneider, Lon; Tariot, Pierre; Yaffe, Kristine

    2008-01-01

    In elderly persons, antipsychotic drugs are clinically prescribed off-label for a number of disorders outside of their Food and Drug Administration (FDA)-approved indications (schizophrenia and bipolar disorder). The largest number of antipsychotic prescriptions in older adults is for behavioral disturbances associated with dementia. In April 2005, the FDA, based on a meta-analysis of 17 double-blind randomized placebo-controlled trials among elderly people with dementia, determined that atypical antipsychotics were associated with a significantly (1.6−1.7 times) greater mortality risk compared with placebo, and asked that drug manufacturers add a ‘black box’ warning to prescribing information for these drugs. Most deaths were due to either cardiac or infectious causes, the two most common immediate causes of death in dementia in general. Clinicians, patients, and caregivers are left with unclear choices of treatment for dementia patients with psychosis and/or severe agitation. Not only are psychosis and agitation common in persons with dementia but they also frequently cause considerable caregiver distress and hasten institutionalization of patients. At the same time, there is a paucity of evidence-based treatment alternatives to antipsychotics for this population. Thus, there is insufficient evidence to suggest that psychotropics other than antipsychotics represent an overall effective and safe, let alone better, treatment choice for psychosis or agitation in dementia; currently no such treatment has been approved by the FDA for these symptoms. Similarly, the data on the efficacy of specific psychosocial treatments in patients with dementia are limited and inconclusive. The goal of this White Paper is to review relevant issues and make clinical and research recommendations regarding the treatment of elderly dementia patients with psychosis and/or agitation. The role of shared decision making and caution in using pharmacotherapy for these patients is

  11. Information and Resources for Caregivers: Sickle Cell Disease

    MedlinePlus

    ... Decisions Find Help Caregiver Stress NYC Services National Resources Specific Illness E- Newsletter What's New Beth Israel ... Advance Directives Frequently Asked Questions Caregiver Guides Caregiver Resource Directory Asian Family Caregiver Handbook Asian Family Caregiver ...

  12. Patients' and Caregivers' Attributes in a Meaningful Care Encounter: Similarities and Notable Differences

    PubMed Central

    Snellman, Ingrid; Gustafsson, Christine; Gustafsson, Lena-Karin

    2012-01-01

    In today's healthcare system, there is an imbalance between what patients expect of caregivers' care and their perception of the care they get. How is it possible to reduce this imbalance? The aim of this paper was to describe attributes associated with meaningful encounters in the Swedish healthcare system based on patients' and caregivers' written narratives and to note the differences and similarities between the attributes identified by the two groups. This paper is a qualitative descriptive study. The analysis was guided by qualitative content analyses. Based on patients' narratives, attributes associated with a meaningful encounter fell into four categories: the kind-hearted caregiver, the thoughtful caregiver, the mutually oriented caregiver, and the helpful caregiver. Based on caregivers' narratives, the attributes were categorized as being humane, caring through physical contact, caring by nurturing communication, joy and laughter in care, and a sense of mutuality. The results show that there are both similarities and differences in patients' and caregivers' opinions about the attributes of a meaningful encounter. Knowing more about the attributes associated with meaningful encounters makes it possible for caregivers to individualize care for patients and makes it easier to help and support patients in what they most need support with. PMID:22701802

  13. Childhood Obesity: The Caregiver's Role.

    ERIC Educational Resources Information Center

    Haschke, Bernadette

    2003-01-01

    Describes the role caregivers play in helping young children dealing with obesity. Examines: (1) causes of childhood obesity; (2) caregiver's position; (3) learning nutrition concepts; (4) preparing and serving healthy foods; (5) encouraging physical activity; (6) working with parents; and (7) assisting an obese child. (SD)

  14. Emotional Availability: Foster Caregiving Experience

    ERIC Educational Resources Information Center

    Nelson, Dean R.

    2012-01-01

    The purpose of the study was to investigate if the emotional availability of caregivers is explanatory for successful adolescent foster care placement--from initial placement of an adolescent to age eighteen or emancipation from foster care, as mandated by the state of Colorado. Emotional availability of foster caregivers and the phenomenon's…

  15. Resurgence of Infant Caregiving Responses

    ERIC Educational Resources Information Center

    Bruzek, Jennifer L.; Thompson, Rachel H.; Peters, Lindsay C.

    2009-01-01

    Two experiments were conducted to identify the conditions likely to produce resurgence among adult human participants. The preparation was a simulated caregiving context, wherein a recorded infant cry sounded and was terminated contingent upon targeted caregiving responses. Results of Experiment 1 demonstrated resurgence with human participants in…

  16. Caregivers--Who Copes How?

    ERIC Educational Resources Information Center

    Chappell, Neena L.; Dujela, Carren

    2009-01-01

    Within gerontological caregiving research, there is a major emphasis on stresses and burdens of this role. Yet there has been little attention directed toward the coping strategies that caregivers engage in to cope with this role and the factors that influence their adoption of different coping strategies. This article examines coping strategies…

  17. Selected Resources on Dementia and Alzheimer's Disease: An Annotated Bibliography for Educators and Consumers. Special Reference Briefs.

    ERIC Educational Resources Information Center

    Frazier, Billie H.; And Others

    This annotated bibliography provides information on Alzheimer's disease and other forms of dementia in older adults. Written for both educators and consumers, citations especially appropriate for family caregivers, friends, neighbors, and other family members are identified with an asterisk (*). A brief introduction discusses the incidence of…

  18. Translation of Two Evidence-Based Programs for Training Families to Improve Care of Persons with Dementia

    ERIC Educational Resources Information Center

    Teri, Linda; McKenzie, Glenise; Logsdon, Rebecca G.; McCurry, Susan M.; Bollin, Salli; Mead, Jennifer; Menne, Heather

    2012-01-01

    The need for evidence-based non-pharmacological community programs to improve care of older adults with dementia is self-evident, considering the sheer numbers of affected individuals; the emotional, physical, and financial toll on affected individuals and their caregivers; the impact on our health care system; and the growing availability of…

  19. Recommendations for the diagnosis and management of Alzheimer's disease and other disorders associated with dementia: EFNS guideline.

    PubMed

    Waldemar, G; Dubois, B; Emre, M; Georges, J; McKeith, I G; Rossor, M; Scheltens, P; Tariska, P; Winblad, B

    2007-01-01

    The aim of this international guideline on dementia was to present a peer-reviewed evidence-based statement for the guidance of practice for clinical neurologists, geriatricians, psychiatrists, and other specialist physicians responsible for the care of patients with dementia. It covers major aspects of diagnostic evaluation and treatment, with particular emphasis on the type of patient often referred to the specialist physician. The main focus is Alzheimer's disease, but many of the recommendations apply to dementia disorders in general. The task force working group considered and classified evidence from original research reports, meta-analysis, and systematic reviews, published before January 2006. The evidence was classified and consensus recommendations graded according to the EFNS guidance. Where there was a lack of evidence, but clear consensus, good practice points were provided. The recommendations for clinical diagnosis, blood tests, neuroimaging, electroencephalography (EEG), cerebrospinal fluid (CSF) analysis, genetic testing, tissue biopsy, disclosure of diagnosis, treatment of Alzheimer's disease, and counselling and support for caregivers were all revised when compared with the previous EFNS guideline. New recommendations were added for the treatment of vascular dementia, Parkinson's disease dementia, and dementia with Lewy bodies, for monitoring treatment, for treatment of behavioural and psychological symptoms in dementia, and for legal issues. The specialist physician plays an important role together with primary care physicians in the multidisciplinary dementia teams, which have been established throughout Europe. This guideline may contribute to the definition of the role of the specialist physician in providing dementia health care.

  20. Depressive Mood, Anger, and Daily Cortisol of Caregivers on High- and Low-Stress Days

    PubMed Central

    Zarit, Steven H.; Kim, Kyungmin; Almeida, David M.; Klein, Laura Cousino

    2015-01-01

    Objectives. This study examines the association of daily cortisol with depressive mood and anger. Method. Depressive mood, anger and 2 markers of cortisol, area under the curve (AUC), and cortisol awakening response (CAR) were examined for caregivers (N = 164) of individuals with dementia (IWDs) across 8 days, some of which IWDs attended an adult day service (ADS) program. Caregivers were primarily female (86.7%) with a mean age of 61.99. First, multilevel models were run with CAR and AUC each as separate covariates of anger and depressive mood. A second set of models examined contextual factors of caregivers (i.e., care-related stressors and amount of ADS use) were added to the models for anger and depressive mood (Model 2). Results. On days where caregivers had AUCs below their average they expressed higher anger scores. However in Model 2, anger was associated with more care-related stressors, but not ADS use or daily cortisol. Caregivers who on average had smaller CARs were more likely to be depressed. In Model 2, depressed mood was associated with more care-related stressors and a low average CAR. Discussion. We found that hypocortisol patterns, reflective of chronic stress experienced by caregivers, are associated with negative mood. PMID:24924160