Validation of the Caregiver Guilt Questionnaire (CGQ) in a sample of British dementia caregivers.

PubMed

Roach, Louise; Laidlaw, Ken; Gillanders, David; Quinn, Kathryn

2013-12-01

Depression is well documented as a key outcome variable for dementia caregivers; however, guilt has been under-researched, which may be in part due to the lack of an appropriate measure. The Caregiver Guilt Questionnaire (CGQ) was originally developed and piloted with a Spanish population but has not yet been tested in an English-speaking population. A cross-sectional postal survey was undertaken with a sample of 221 dementia caregivers in the UK, as part of a larger study of dementia caregiver outcome measures. The five-factor structure identified for the CGQ in the Spanish sample was replicated in this study. The five factors, "guilt about doing wrong by the care recipient," "guilt about failing to meet the challenges of caregiving," 'guilt over experience of negative emotions in relation to caregiving," "guilt about self-care," and "guilt about neglecting other relatives" accounted for 60% of the variance. Internal consistencies for the whole scale and factors were acceptable, and convergent validity was established with the Zarit Burden Interview guilt factor. A higher score on the CGQ was associated with a higher score on the Center for Epidemiological Studies Depression scale (CES-D) and a new cut-off score of 22 was established, which predicted a clinical score on the CES-D with 80.0% sensitivity and 61.5% specificity. The replication of the five-factor structure suggests that these are relevant themes within the feelings of guilt to both Hispanic and British dementia caregivers. The CGQ has been demonstrated to be a valid measure for use with British dementia caregivers and is likely to be of use in clinical and research settings.

Dementia -- involving patients and their caregivers in a drama programme: the caregivers' experiences.

PubMed

Lepp, Margret; Ringsberg, Karin C; Holm, Ann-Kristin; Sellersjö, Gunilla

2003-11-01

A cultural drama programme was designed for patients with dementia and was led by teachers trained in drama in education and storytelling. The focus was on dance, rhythm, song, storytelling and conversations. The aim of this study was to describe how a drama programme for patients with dementia and their caregivers was experienced by the caregivers. Twelve strategically selected patients, 10 women and two men, with moderate and severe dementia, and their seven female caregivers participated in the programme. Sessions were held for one and a half hour, weekly once for 2 months. A focus group interview was held with the caregivers 1 month after the programme had ended. The interview and analysis of data were carried out according to the principles of phenomenography. Two categories, 'interaction' and 'professional growth', and five subcategories emerged in the analysis. In these, the caregivers described how fellowship developed between the participants and how they shared joy and sorrow. The patients communicated with each other and the leaders, and the programme seemed to help the patients to remember and make associations with situations experienced earlier in their lives. The patients also showed knowledge and ability in things about which the caregivers were unaware until the time of the drama programme. In other daily life situations, the patients showed their feelings, both joy and sorrow, more openly, their self-confidence grew and they showed greater interest in their surroundings. The caregivers furthermore expressed that they felt confirmed in their roles as caregivers. The programme prompted them to reflect upon their roles as caregivers. In conclusion, a drama programme with cultural features seems to increase the quality of life in patients with dementia and strengthen the caregivers in their profession.

The Thoughts Questionnaire (TQ) for family caregivers of people with dementia.

PubMed

Sullivan, Karen A; Beattie, Elizabeth; Khawaja, Nigar G; Wilz, Gabriele; Cunningham, Lauren

2016-11-01

To develop a new measure of dysfunctional thoughts for family caregivers of people living with dementia. These thoughts can contribute to negative outcomes, but they may be modifiable. A stepwise process was used to develop the Thoughts Questionnaire, commencing with item generation, concept mapping, and pilot testing in a sample of professional and nonprofessional caregivers of people with dementia (n = 18). Next, an independent sample of 35 family caregivers of people with dementia (30 female; M age  = 64.30, standard deviation = 10.65) completed: (a) the Thoughts Questionnaire; (b) an existing measure of dysfunctional thoughts, the Dementia Thoughts Caregivers Questionnaire; and (c) separate validated measures of depressive symptoms, caregiver stress, and coping, respectively. The level of agreement with dysfunctional thought statements from the Dementia Thoughts Caregivers Questionnaire and Thoughts Questionnaire was low. However, a small number of Thoughts Questionnaire statements were strongly endorsed by over 85% of the sample. Both dysfunctional thought measures had adequate reliability, but total scores were not significantly intercorrelated (r = .287, p = .095). Only the Thoughts Questionnaire was significantly, positively correlated with most caregiver stress measures. Thoughts Questionnaire items required a much lower reading level than the Dementia Thoughts Caregivers Questionnaire items. This study provides preliminary data on a tool for assessing the negative role-related thoughts that family caregivers of people with dementia may experience. Given that these thoughts are implicated in depression but they may be modified, the capacity to identify dysfunctional thoughts may prove useful in caregiver support programs. © The Author(s) 2014.

Emotional reactivity to daily life stress in spousal caregivers of people with dementia: An experience sampling study

PubMed Central

2018-01-01

Introduction Caregivers differ in their emotional response when facing difficult situations during the caregiving process. Individual differences in vulnerabilities and resources could play an exacerbating or buffering role in caregivers’ reactivity to daily life stress. This study examines which caregiver characteristics modify emotional stress reactivity in dementia caregivers. Methods Thirty caregivers collected momentary data, as based on the experience sampling methodology, to assess (1) appraised subjective stress related to events and minor disturbances in daily life, and (2) emotional reactivity to these daily life stressors, conceptualized as changes in negative affect. Caregiver characteristics (i.e. vulnerabilities and resources) were administered retrospectively. Results Caregivers who more frequently used the coping strategies ‘seeking distraction’, ‘seeking social support’, and ‘fostering reassuring thoughts’ experienced less emotional reactivity towards stressful daily events. A higher educational level and a higher sense of competence and mastery lowered emotional reactivity towards minor disturbances in daily life. No effects were found for age, gender, and hours of care and contact with the person with dementia. Discussion Caregiver resources can impact emotional reactivity to daily life stress. Interventions aimed at empowerment of caregiver resources, such as sense of competence, mastery, and coping, could help to reduce stress reactivity in dementia caregivers. PMID:29617373

Caregiver burden in Alzheimer-type dementia and psychosis: A comparative study from India.

PubMed

Sinha, P; Desai, N G; Prakash, O; Kushwaha, S; Tripathi, C B

2017-04-01

Caregiver burden in dementia is an important area of research. Providing care for a relative can be a potent source of chronic stress and can have deleterious consequences for both the physical and emotional health of caregivers. This study aims to evaluate the burden of care in caregivers of patients with Alzheimer-type dementia and compare it with elderly psychosis; and to also study the factors that influence burden of care in Alzheimer's dementia. Thirty-two caregiver-patient dyads of Alzheimer-type dementia were compared with thirty-two caregiver-patient dyads of psychosis. Cognitive assessment, abilities to perform activities of daily living and severity of dementia was assessed in the patients. Zarit Burden Interview was used to study the caregiver burden in both groups. The mean burden score in dementia caregivers was high at 47.7, whereas the mean burden score for elderly psychosis caregivers was lesser at 33.6, and this difference in mean burden scores was found to be statistically significant. Spouses had the highest mean burden scores of 53.48. Caregiver burden in dementia was positively correlated with cognitive impairment and inability to carry out ADLs. Presence of psychological distress in caregivers was also an indicator for greater caregiver burden in dementia. The study revealed that dementia carries a greater caregiver burden when compared with elderly patients with psychosis. Innovative interventions are needed to remove burden from caregiving, making it a meaningful practice integral to the Indian society. Copyright © 2017 Elsevier B.V. All rights reserved.

Characteristics of informal caregivers of patients with dementia in Alicante province.

PubMed

Toribio-Díaz, M E; Medrano-Martínez, V; Moltó-Jordá, J M; Beltrán-Blasco, I

2013-03-01

Informal caregivers provide care to dementia patients, and this service prolongs their stay at home. To describe characteristics of dementia patients in the province of Alicante, as well as the profiles and roles of caregivers who assist them. Multi-centre prospective study carried out in 4 neurology departments in Alicante (June 2009 to January 2010). Dementia patients' relatives/caregivers were included in sequential order. The following variables were analysed: a) Demographic information pertaining to the patient and caregivers (age, sex, marital and employment status, educational level, relationship to patient); b) patient's family unit; c) motivating factor for primary caregiver (PC); d) secondary caregiver (SC) roles; e) country of citizenship of formal caregiver (FC) and source of remuneration (private/public); f) caregivers' knowledge of dementia. Most of our patients live at home (74.8%), and are female (69%) with Alzheimer's disease (78.4%) in a moderately severe stage (GDS level 4-5, 71.6%). PCs and SCs are mainly women (72.1% and 60.5% respectively), middle-aged and directly related to the patient (sons/daughters account for 64.3% of the PCs and 54.4% of the SCs); most are homemakers with a low educational level. Caregivers in the first category (PC) provide care due to moral obligation (75%), while those in the second (SC) involve patients in leisure or other stimulating activities (82.3%). Absent caregivers tend to be males (73.3%) residing long distances from the relative (52.4%). The FC tends to be female (91.7%), Spanish (81.8%) and privately remunerated. Women dominate the network of caregivers for dementia patients, whether as principal caregivers, supporting caregivers or formal caregivers (in all cases, they have only limited training in dementia management). Males are largely absent. Better knowledge of the care structure supporting dementia patients may be helpful in the overall management of these patients. Copyright © 2012 Sociedad Espa

Psychosocial impact of early onset dementia among caregivers.

PubMed

Kimura, Nathália R S; Maffioletti, Virgínia L R; Santos, Raquel L; Baptista, Maria Alice Tourinho; Dourado, Marcia C N

2015-01-01

There is growing recognition of early onset dementia (EOD) as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD) and their caregivers. To analyze the psychosocial impact of EOD in family caregivers. The study design was qualitative. Nine EOD caregivers (7 women) were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.

Spousal caregivers and persons with dementia: Increasing participation in shared leisure activities among hospital-based dementia support program participants.

PubMed

DiLauro, Michelle; Pereira, Amanda; Carr, Jennifer; Chiu, Mary; Wesson, Virginia

2015-02-20

Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses' participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimization with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognizing and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers' needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions. © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

Caregivers' resilience is independent from the clinical symptoms of dementia.

PubMed

Dias, Rachel; Simões-Neto, José Pedro; Santos, Raquel Luiza; Sousa, Maria Fernanda Barroso de; Baptista, Maria Alice Tourinho; Lacerda, Isabel Barbeito; Kimura, Nathalia Ramos Santos; Dourado, Marcia Cristina Nascimento

2016-12-01

Resilience is the capacity for successful adaptation when faced with the stress of adversity. We aimed to investigate the relationship between caregivers' resilience and the sociodemographic and clinical factors of people with dementia. Cross-sectional assessment of 58 people with dementia and their caregiver dyads showed that most caregivers were female adult children. The caregivers reported moderate to higher levels of resilience, lower levels of anxiety and depressive symptoms and moderate levels of burden. Resilience was not related to the caregiver's gender (p = 0.883), nor clinical (p = 0.807) or emotional problems (p = 0.420). The regression showed that resilience was related to the caregiver's quality of life (p < 0.01) and inversely associated with their depressive symptoms (p < 0.01). There was no relationship between caregivers' resilience and the sociodemographic and clinical characteristics of people with dementia. We can assume that resilience is an individual characteristic. Support groups should also focus on the factors that may increase resilience among caregivers.

A multinational review of recent trends and reports in dementia caregiver burden.

PubMed

Torti, Frank M; Gwyther, Lisa P; Reed, Shelby D; Friedman, Joëlle Y; Schulman, Kevin A

2004-01-01

This systematic review of the literature focuses on the influence of ethnic, cultural, and geographic factors on the caregivers of patients with dementia. In particular, we explore the impact of cultural expectations on five important questions: 1) Do the characteristics of dementia affect caregiver burden? 2) Do characteristics of the caregiver independently predict burden? 3) Does the caregiver affect patient outcomes? 4) Does support or intervention for caregiver result in reduced caregiver burden or improved patient outcomes? 5) Finally, do patient interventions result in reduced caregiver burden or improved patient outcomes? Our findings suggest that noncognitive, behavioral disturbances of patients with dementia result in increased caregiver burden and that female caregivers bear a particularly heavy burden across cultures, particularly in Asian societies. Caregiver burden influences time to medical presentation of patients with dementia, patient condition at presentation, and patient institutionalization. Moreover, interventions designed to reduce caregiver burden have been largely, although not universally, unsuccessful. Pharmacological treatments for symptoms of dementia were found to be beneficial in reducing caregiver burden. The consistency of findings across studies, geographic regions, cultural differences, and heathcare delivery systems is striking. Yet, there are critical differences in cultural expectations and social resources. Future interventions to reduce caregiver burden must consider these differences, identify patients and caregivers at greatest risk, and develop targeted programs that combine aspects of a number of interventional strategies.

Randomized Trial of the Family Intervention: Telephone Tracking-Caregiver for Dementia Caregivers: Use of Community and Healthcare Resources.

PubMed

Tremont, Geoffrey; Davis, Jennifer D; Ott, Brian R; Galioto, Rachel; Crook, Cara; Papandonatos, George D; Fortinsky, Richard H; Gozalo, Pedro; Bishop, Duane S

2017-05-01

To examine the effects of a telephone-delivered intervention, Family Intervention: Telephone Tracking-Caregiver (FITT-C), on community support and healthcare use by dementia caregivers. Randomized, controlled trial. Academic medical center. Dyads (n = 250) of distressed informal dementia caregivers and care recipients. Caregivers were randomly assigned to receive the FITT-C (n = 133) or telephone support (TS; n = 117). Both groups received 16 telephone contacts from a master's-level therapist over 6 months. The FITT-C intervention provided psychoeducation, problem solving, and other directive approaches based on assessment of critical areas (e.g., mood, behavior, family functioning, social support). TS provided supportive therapeutic strategies. Outcome variables were caregiver report of community support service use, number of visits to the emergency department (ED) for caregivers and care recipients, and hospital stays for caregivers during the interventions. Intervention groups did not differ in demographic characteristics, use of support services, or use of healthcare resources at baseline. Caregivers who received the FITT-C used community support services at end of treatment significantly more than those receiving TS (P = .02). FITT-C caregivers had a significantly lower rate of ED visits (rate difference 9.5%, P = .048) and hospital stays (rate difference 11.4%, P = .01) over the 6-month course of the intervention than TS caregivers. Care recipient use of community or medical resources did not differ according to group. An entirely telephone-delivered intervention was effective in increasing caregiver engagement in community resources and reducing caregiver use of hospital-based healthcare resources. Results highlight the potential effect of FITT-C on healthcare use. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

Korean American dementia caregivers' attitudes toward caregiving: the role of social network versus satisfaction with social support.

PubMed

Lee, Youjung; Choi, Sunha

2013-06-01

The purpose of this study was to explore how Korean American family caregivers view the services they offer to patients with dementia. It also investigated the roles of social networks and satisfaction with social support on attitudes toward caregiving. Social network, satisfaction with social support, demographic characteristics, caregiving-related stress factors, and cultural factors were examined. We used a convenience sample of 85 Korean American dementia caregivers. The results from hierarchical multiple regression models show that the level of satisfaction with social support significantly contributed to Korean American caregivers' attitudes toward working with patients with dementia, while no statistically significant associate was found for social network. Higher levels of satisfaction with social support were associated with greater positive attitudes toward caregiving among Korean American caregivers (b = 0.26, p = .024). The implications for mental health professionals and policy makers are discussed.

Factors Underpinning Caregiver Burden in Frontotemporal Dementia Differ in Spouses and their Children

PubMed Central

Kaizik, Cassandra; Caga, Jashelle; Camino, Julieta; O’Connor, Claire M.; McKinnon, Colleen; Oyebode, Jan R.; Piguet, Olivier; Hodges, John R.; Mioshi, Eneida

2017-01-01

The objectives of this observational study were to (1) compare spousal and child caregiver burden; (2) compare co-resident and live-out child caregiver burden; and (3) investigate factors influencing spousal and child caregiver burden. Data was collected from 90 caregivers of people with frontotemporal degeneration (FTD) recruited from the Frontotemporal Dementia Research Group (Frontier) at Neuroscience Research, Australia. Of this caregiver group, 43 were spousal caregivers and 47 were child caregivers. Caregiver burden and emotional state were evaluated using the short Zarit Burden Interview and the short version of the Depression, Anxiety and Stress Scale-21. The Social Network Index was applied to ascertain the social network of the caregiver, while the Intimate Bond Measure was used to evaluate the current quality of the relationship between the caregiver and the person with dementia. The Frontotemporal Dementia Rating Scale was used to assess severity of dementia. Spousal and child caregivers experienced similar levels of burden, depression, anxiety, and stress, regardless of disease severity. Co-resident child caregivers had smaller social networks and greater burden than live-out caregivers. Dementia severity was key in spousal caregiver burden, whereas caregiver depression was most important in child caregiver burden. Child and spousal caregivers of individuals with FTD share similar levels of burden, influenced by different factors. Future interventions need to account for these differences. PMID:28106550

Feasibility of central meditation and imagery therapy for dementia caregivers.

PubMed

Jain, Felipe A; Nazarian, Nora; Lavretsky, Helen

2014-08-01

Family dementia caregivers are at high risk of depression and burnout. We assessed the feasibility of Central Meditation and Imagery Therapy for Caregivers (CMIT-C), a novel 8-week group meditation and guided imagery group therapy program, for dementia caregivers reporting stress because of caregiving responsibilities. Twelve family dementia caregivers enrolled in CMIT-C. Primary outcomes included depression and anxiety, and secondary outcomes included insomnia, quality of life, and mindfulness. Changes over the study and 3 month follow-up were analyzed with non-parametric related samples tests. Correlations of feeling state changes from meditation diaries at 1 week were made with symptom changes post meditation training. Ten participants completed the study. Completers came to an average of 7 ± 1 sessions out of a possible 8 sessions, and turned in home practice logs of 90 ± 10% of the time. Anxiety, depression, and insomnia symptoms decreased, and mindfulness ratings improved with large effects (all p < 0.05 and Cohen's d ≥ 0.7). Gains were stable at 3 months. Early response during the first week of meditation practice was associated with subsequent home meditation practice, anxiety change at 8 weeks, and endpoint satisfaction with CMIT-C. Central Meditation and Imagery Therapy for Caregivers is a feasible intervention for dementia caregivers. Results suggest that this therapeutic technique can reduce symptoms of anxiety, depression, and insomnia, and increase levels of mindfulness. Early response to meditation practice predicted those with the greatest short-term benefits, and this may inform future studies of meditation. Larger controlled efficacy studies of CMIT-C for dementia caregivers are warranted. Copyright © 2014 John Wiley & Sons, Ltd.

Dementia caregivers' responses to 2 Internet-based intervention programs.

PubMed

Marziali, Elsa; Garcia, Linda J

2011-02-01

The aim of this study was to examine the impact on dementia caregivers' experienced stress and health status of 2 Internet-based intervention programs. Ninety-one dementia caregivers were given the choice of being involved in either an Internet-based chat support group or an Internet-based video conferencing support group. Pre-post outcome measures focused on distress, health status, social support, and service utilization. In contrast to the Chat Group, the Video Group showed significantly greater improvement in mental health status. Also, for the Video Group, improvements in self-efficacy, neuroticism, and social support were associated with lower stress response to coping with the care recipient's cognitive impairment and decline in function. The results show that, of 2 Internet-based intervention programs for dementia caregivers, the video conferencing intervention program was more effective in improving mental health status and improvement in personal characteristics were associated with lower caregiver stress response.

Feasibility of Central Meditation and Imagery Therapy for Dementia Caregivers

PubMed Central

Jain, Felipe A.; Nazarian, Nora; Lavretsky, Helen

2014-01-01

Objectives Family dementia caregivers are at high risk of depression and burnout. We aimed to assess the feasibility of Central Meditation and Imagery Therapy for Caregivers (CMIT-C), a novel 8-week group meditation and guided imagery group therapy program, for dementia caregivers reporting stress due to caregiving responsibilities. Methods 12 family dementia caregivers enrolled in CMIT-C. Primary outcomes included depression and anxiety, and secondary included insomnia, quality of life, and mindfulness. Changes over the study and three month follow-up were analyzed with non-parametric related samples tests. Correlations of feeling state changes from meditation diaries at 1 week were made with symptom changes post meditation training. Results 10 participants completed the study. Completers came to an average of 7 ± 1 sessions out of a possible 8, and turned in home practice logs 90 ± 10% of the time. Anxiety, depression and insomnia symptoms decreased, and mindfulness ratings improved with large effects (all p < 0.05 and Cohen's d ≥ 0.7). Gains were stable at 3 months. Early response during the first week of meditation practice was associated with subsequent home meditation practice, anxiety change at eight weeks, and endpoint satisfaction with CMIT-C. Conclusions CMIT-C is a feasible intervention for dementia caregivers. Results suggest that this therapeutic technique can reduce symptoms of anxiety, depression, and insomnia, and increase levels of mindfulness. Early response to meditation practice predicted those with the greatest short-term benefits, and this may inform future studies of meditation. Larger, controlled efficacy studies of CMIT-C for dementia caregivers are warranted. PMID:24477920

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…

Predictors of Desire to Institutionalization in Dementia Caregivers From a Developing Country.

PubMed

Sinha, Preeti; Yohannan, Sherin; Thirumoorthy, A; Sivakumar, Palanimuthu Thangaraju

2017-08-01

Older adults with dementia have higher rates of institutionalization than those without dementia. Desire to institutionalization (DTI) is an important factor influencing the actual institutionalization but is less well studied. This cross-sectional study examines the DTI with the scale of same name developed by Morycz, in 1985, in a sample of 50 caregivers of patients with dementia in a tertiary clinical care setting in a developing country. Caregiver burden associated with personal strain (by factor analyzed Zarit Burden Interview scale), and stress perceived out of caregiving (by Perceived Stress Scale) predicted higher DTI. Besides, those who were married had lower DTI scores. The factors which didn't affect DTI were total caregiver burden, family and social support, age of patient and caregiver, education of caregiver, severity and duration of dementia, and treatment duration. These results were different from those of developed country-based DTI studies and may indicate sociocultural differences.

Does Dementia Caregiving Accelerate Frailty? Findings From the Health and Retirement Study.

PubMed

Dassel, Kara B; Carr, Dawn C

2016-06-01

Numerous studies have discovered negative health consequences associated with spousal caregiving at the end of life; however, little is known about how care-recipient cognitive status impacts caregiver health outcomes, specifically in the area of frailty, and whether health consequences remain over time. This study examines differences in frailty between spousal caregivers of persons with and without a dementia diagnosis. Using 7 biannual waves of the Health and Retirement Study data (1998-2010), we examined odds of becoming frailer among surviving spouses of individuals who died between 2000 and 2010 (N = 1,246) with and without dementia. To assess increased frailty, we used a Frailty Index, which assesses chronic diseases, mobility, functional status, depressive symptoms, and subjective health. Logistic regression was used to examine the relationship between care-recipient cognitive status and whether, compared with the wave prior to death of the care-recipient, spousal caregivers were frailer: (1) in the wave the death was reported and (2) 2 years after the death was reported. Dementia caregivers had 40.5% higher odds of experiencing increased frailty by the time the death was reported and 90% higher odds in the following wave compared with non-dementia caregivers. Given our findings, we discuss public health implications regarding the health and well-being of caregivers of persons with dementia. Given projected increases in dementia diagnoses as the population ages, we propose a need for interventions that provide enhanced support for dementia caregivers. © The Author 2014. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Respite service use among caregivers of older people: comparative analysis of family dementia caregivers with musculoskeletal and circulatory system disorder caregivers.

PubMed

Vecchio, Nerina; Fitzgerald, Janna A; Radford, Katrina; Kurrle, Susan

2018-01-01

To identify the main drivers of the use of respite services and the need for respite services among caregivers of people experiencing dementia relative to family caregivers of people with other health conditions. Based on nationally representative secondary data regression analysis was used to test the association between selected health conditions and the utilisation of and need for respite services. For a person living with dementia the odds of using respite care are higher than for a person with either a musculoskeletal or circulatory condition. Family caregivers of people living with dementia report the odds of the need for more respite as 5.3 times higher than for family caregivers of people with musculoskeletal conditions and 7.7 times higher than for family caregivers of people with circulatory conditions. The main reason for never using respite services is largely driven by the type of health condition, age of care recipient, existence of a spouse, and level of disability. Respite services that cater to the specific needs of families experiencing dementia at home should become a higher priority within the aged care sector. Alternative models of respite care that focus on prevention and early intervention would be cost effective.

Professional discipline and support recommendations for family caregivers of persons with dementia.

PubMed

Gaugler, Joseph E; Westra, Bonnie L; Kane, Robert L

2016-06-01

Family caregivers of persons with dementia often require support services to help ease the challenges of providing care. Although the efficacy of some dementia caregiver interventions seems apparent, evidence indicating which types of protocols can best meet the diverse needs of individual families is not yet available. Because of this gap, families must often turn to professionals for such guidance, but it remains unknown whether professionals from different disciplines are more inclined to recommend particular types of services than others. This study assessed whether recommendations of supportive interventions to hypothetical dementia family caregivers differed by professional discipline. In a cross-sectional survey design, a convenience sample of 422 dementia care professionals across the USA viewed up to 24 randomly selected, hypothetical scenarios that systematically varied characteristics of persons with dementia and their caregivers. For each scenario, 7 possible intervention recommendations were rated. A total of 6,890 scenarios were rated and served as the unit of analysis. General linear models revealed that discipline was often a stronger predictor of how likely professionals were to recommend dementia caregiver interventions than caregiver, care recipient, or other professional characteristics. Psychotherapists tended to recommend psychoeducation more than other professionals, while those in medicine were more likely to recommend training of the person with dementia and psychotherapy. The heterogeneity in recommendations suggests that the professional source of information influences the types of support families are directed toward. Empirical evidence should inform these professional judgments to better achieve person-centered care for families.

Knowledge management in dementia care networks: a qualitative analysis of successful information and support strategies for people with dementia living at home and their family caregivers.

PubMed

Heinrich, S; Laporte Uribe, F; Roes, M; Hoffmann, W; Thyrian, J R; Wolf-Ostermann, K; Holle, B

2016-02-01

Stakeholders involved in community dementia support services often work on their own and without coordination with other services. These circumstances can result in a lack of information and support for people with dementia and their family caregivers at home. To increase the coordination between existing support services, so-called 'Dementia Care Networks' (DCNs) have been established. Most of the tasks that are performed in DCNs are based on communication strategies. Therefore, knowledge management (KM) is a key process in these networks. However, few studies have focused on this topic. This study attempted to evaluate KM strategies in DCNs across Germany as part of the DemNet-D study. A qualitative interview study design was used. Qualitative data were collected during single and group interviews with key persons associated with thirteen DCNs. Interviews were audiotaped and transcribed, and a structured content analysis was conducted. The framework for the analysis was derived from a KM model. Information dissemination strategies for people with dementia and their informal caregivers based on actively established contacts appear to be more successful than passive strategies. General practitioners often play a key role as external gatekeepers in initiating contact between a network and a person affected by dementia. In this context, case managers can help integrate external stakeholders, such as general practitioners or pharmacists, into DCNs using different KM strategies. The systematic development of common objectives under an agency-neutral leadership seems to be an important aspect of successful KM within DCNs. The findings reported here can help DCNs optimize their KM strategies for generating tailored information and support services for people with dementia living at home and their family caregivers. In particular, the identified potential knowledge distribution barriers and facilitators will be of practical use to DCN stakeholders. Copyright © 2015 The

Do spouse caregivers of young and older persons with dementia have different needs? A comparative study.

PubMed

Wawrziczny, Emilie; Pasquier, Florence; Ducharme, Francine; Kergoat, Marie-Jeanne; Antoine, Pascal

2017-09-01

The aim of this study was to explore the needs of spouse caregivers of persons with dementia (PWD) and then to compare them based on the PWD's age at disease onset. This data could be used to adapt support programmes to address differences between the two groups. Thirty-eight spouse caregivers of persons with late-onset dementia and 40 spouse caregivers of persons with early-onset dementia (PEOD) agreed to participate in the study. The mean ± SD age of the PEOD was 57.6 ± 4.0 years, whereas it was 80.9 ± 5.3 years for the persons with late-onset dementia. Interviews were conducted in the spouse caregivers' homes with only the spouse caregiver. The semi-structured interviews were based on the French version of the Carers Outcome Agreement Tool. The interviews were analyzed in two steps. The first step was qualitative to identify needs. The data were thematically analyzed using QSR NVivo 10. The second step was quantitative to compare the needs depending on the PWD's age at onset. The comparison between the two groups was performed using the χ 2 test. The results demonstrated that the majority of needs are the same for the two groups of spouse caregivers. All caregivers need to unwind, to stimulate and pay attention to the PWD, to break the isolation, and to be more prepared and confident. However, some differences emerge, with the spouse caregivers of PEOD expressing a greater number of needs. The caregivers of PEOD seem to have a greater need to interact and maintain contacts with other people (P = 0.001), have more general care-related needs (P = 0.005), require more appropriate care structures (P = 0.037), and need greater assistance with administrative procedures (P = 0.004). To improve spouse caregivers' well-being and sense of efficiency, it would be interesting to develop a support programme with a common framework and specific modules depending on the PWD's age at disease onset. © 2017 Japanese Psychogeriatric Society.

The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator.

PubMed

Liu, Hsin-Yi; Huang, Lian-Hua

2018-04-01

The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan. This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal. Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant. Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.

[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

[Resilience in caregivers of patients with dementia: A preliminary study].

PubMed

Fernández-Lansac, Violeta; Crespo López, María; Cáceres, Rebeca; Rodríguez-Poyo, María

2012-01-01

Caring for a relative with dementia often has negative effects on the caregiver's physical and psychological health. However, many caregivers successfully cope with the stress factors arising from care, and even have uplifts during their experience, showing high resilience levels. This study presents a preliminary analysis of resilience in caregivers of patients with dementia, exploring its relationship with different variables. Resilience was assessed (by CD-RISC) in 53 family caregivers of patients with dementia. Resilience was correlated to the following variables: caregiving context, stressors (e.g., cognitive impairment), appraisals (e.g., burden), moderators (e.g., personality traits and resources), and caregiving consequences (physical and psychological health). The participants showed moderate scores on resilience. Resilience was associated with poor emotional and physical status (significant inverse correlations with anxiety, depression, psycho-active drug use, health habits…). High resilience scores were significantly correlated to burden, neuroticism and extraversion, self-efficacy, self-esteem and less use of emotion focused coping strategies. Higher resilience relates to a good emotional and physical status in caregivers. Moreover, resilience is more associated with caregiver variables (e.g., appraisal and coping with care, personality features), than to situational variables. The data highlight the strengthening of these types of appraisal and coping as a way to improve caregivers' resilience and, consequently, their health. Copyright © 2011 SEGG. Published by Elsevier Espana. All rights reserved.

Exploring the use of the Dementia Management Strategies Scale in caregivers of persons with dementia in Singapore.

PubMed

Tan, Louisa; Yap, Philip; Ng, Wai Yee; Luo, Nan

2013-01-01

Well-being in persons with dementia (PWD) depends much on the quality and type of care received. The Dementia Management Strategies Scale (DMSS) is a useful instrument to appraise care styles of caregivers. The present study expanded on previous research by refining and establishing the scale's content validity and psychometric properties in the Singapore context. Five family caregivers and four dementia care professionals (nurse, occupational therapist, social worker and doctor) reviewed the DMSS for content validity. Two hundred and forty-six family caregivers completed questionnaires which assessed caregiver and patient characteristics, and dementia management strategies with DMSS. Internal consistency reliability was assessed and construct validity was evaluated through Pearson's correlation with extant instruments. Eight items from the 28-item DMSS were omitted after content review as they were deemed inappropriate in our socio-cultural setting. A factor analysis with Varimax rotation confirmed a two-factor structure (positive and negative dimensions) for the revised DMSS (rDMSS). The two subscales showed good internal consistency (Cronbach's alpha .89 and .87). Moderate to strong correlations (.35-.53) with the scales, Zarit Burden Instrument, Revised Memory and Behavioural Problems Checklist, General Health Questionnaire, Short Sense of Competence Scale, Gains in Alzheimer's Care Instrument and Positive Aspects of Caregiving established convergent and divergent construct validity of rDMSS. The shortened 20-item rDMSS is a psychometrically valid instrument which can serve as a measure of dementia care strategy from the perspective of the caregiver in Singapore.

A secondary data analysis of Internet use in caregivers of persons with dementia.

PubMed

Kim, Heejung; Rose, Karen M; Netemeyer, Richard G; Merwin, Elizabeth I; Williams, Ishan C

2014-12-01

This paper is a secondary data analysis to investigate relationships among caregiver stress appraisal, self-rated health and health-related Internet use. Cross-sectional correlation design. National Alliance for Caregiving telephone survey conducted in the USA was a primary data source collected in 2009 from 258 caregivers of persons with dementia, who used the Internet to perform care-giving tasks. Based on Pearlin's Stress Process Model, structural equation modelling was conducted. Caregivers with poor health reported higher levels of caregiver stress appraised, which was associated with more Internet use for health-related purposes. It is required to develop effective Internet-based resources to meet the needs of highly stressed caregivers of persons with dementia. However, there was no relationship between self-rated health and health-related Internet use in dementia caregiver.

Resilience in Caregivers of Partners With Young Onset Dementia: A Concept Analysis.

PubMed

Kobiske, Karie R; Bekhet, Abir K

2018-05-01

Over 200,000 Americans diagnosed with young onset dementia (YOD), dementia diagnosed prior to age 65, are cared for by family members. This can be costly to caregivers' physical and psychological health. Some adapt well to the caregiver role and are said to be resilient. Aim/Question: This paper builds on current understanding of the concept of resilience and applies this to caregivers of partners diagnosed with YOD. Concept analysis. Resilient caregivers exhibit attributes including determination, flexibility, positive thinking, self-efficacy, resourcefulness, social support and spirituality. YOD affects caregiver's health. Much research has been done on interventions for dementia caregivers. These interventions do not necessarily meet the needs of YOD caregivers as they do not account for dynamics in the family. By recognizing what is resiliency in YOD caregivers, interventions can be developed that focus on characteristics that build these attributes. Understanding the concept of resilience related to caregiving for a partner diagnosed with YOD allows for future development, measurement, and evaluation of nursing interventions. Nursing staff are in a strategic position to provide effective interventions to enhance resilience among caregivers of YOD.

Caregiver Burden in Semantic Dementia with Right- and Left-Sided Predominant Cerebral Atrophy and in Behavioral-Variant Frontotemporal Dementia.

PubMed

Koyama, Asuka; Hashimoto, Mamoru; Fukuhara, Ryuji; Ichimi, Naoko; Takasaki, Akihiro; Matsushita, Masateru; Ishikawa, Tomohisa; Tanaka, Hibiki; Miyagawa, Yusuke; Ikeda, Manabu

2018-01-01

Caregiver burden is a serious concern for family caregivers of dementia patients, but its nature is unclear in patients with semantic dementia (SD). This study aimed to clarify caregiver burden for right- (R > L) and left-sided (L > R) predominant SD versus behavioral-variant frontotemporal dementia (bvFTD) patients. Using the Japanese version of the Zarit Burden Interview (ZBI) and the Neuropsychiatric Inventory, we examined caregiver burden and behavioral and psychological symptoms of dementia (BPSD) in 43 first-visit outpatient/family caregiver dyads (bvFTD, 20 dyads; SD [L > R], 13 dyads; SD [R > L], 10 dyads). We found a significant difference in ZBI score between the 3 diagnostic groups. Post hoc tests revealed a significantly higher ZBI score in the bvFTD than in the SD (L > R) group. The ZBI scores in the SD (L > R) and SD (R > L) groups were not significantly different, although the effect size was large. Caregiver burden was significantly correlated with BPSD scores in all groups and was correlated with activities of daily living and instrumental activities of daily living decline in the bvFTD and SD (R > L) groups. Caregiver burden was highest in the bvFTD group, comparatively high in the SD (R > L) group, and lowest in the SD (L > R) group. Adequate support and intervention for caregivers should be tailored to differences in caregiver burden between these patient groups.

Characteristics of the spouse caregiving experience: Comparison between early- and late-onset dementia.

PubMed

Wawrziczny, Emilie; Berna, Guillaume; Ducharme, Francine; Kergoat, Marie-Jeanne; Pasquier, Florence; Antoine, Pascal

2017-06-20

To investigate the characteristics of the caregiving experience according to age at onset of dementia to adapt support programs. Fifty-seven spouse caregivers of persons with early-onset dementia (PEOD) and 93 spouse caregivers of persons with late-onset dementia (PLOD) participated. The characteristics of the caregiving experience were assessed using questionnaires. We compared the two groups according to age at onset of the disease using a multivariate test, Pillai's Trace test. The analysis showed that there were similarities and differences between the two groups of spouse caregivers. All spouse caregivers were confident in their caregiving role and fairly well prepared for future needs and reported mild depressive and anxious symptoms. However, they lacked informal support, had low confidence in requesting respite care and reported effects on their health. Compared to spouse caregivers of PLOD, spouse caregivers of PEOD had more severe perceptions of the cognitive disorders of persons with dementia (PWD) and had a better sense of preparedness and knowledge of services. Spouse caregivers of PLOD were more confident in their ability to control disturbing thoughts. The results suggest that programs should provide information on support networks to improve preparedness for spouse caregivers of PLOD as well as emphasizing positive coping strategies for caregivers of PEOD to maintain good-quality relationships with PWD, which influences the perception of the symptoms. For both groups, family relationships should be considered.

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…

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)…

Complaints of informal caregivers providing home care for dementia patients: the Pixel study.

PubMed

Thomas, Philippe; Chantoin-Merlet, Stéphanie; Hazif-Thomas, Cyril; Belmin, Joël; Montagne, Bernard; Clément, Jean-Pierre; Lebruchec, Marianne; Billon, Rémy

2002-11-01

Prospective study of the complaints, problems and requirements of the main caregiver providing home care for dementia patients. To determine the complaints of home caregivers, how they are interrelated and what causes them. Self-administered questionnaire of 42 questions on the patient and caregiver, including a list of complaints, given to the main caregiver. Medical questionnaire on the patient filled in by the attending physician, usually a specialist, freelance or salaried doctor. 408 sets of records were compiled, concerning 236 demented women (77.1 +/- 0.47 years) and 172 demented men (75.7 +/- 0.57 years). In two-thirds of cases, the main caregiver was a woman aged 60.6 +/- 0.79 years. Female caregivers were more vulnerable than male caregivers. The most frequent caregiver complaint, regardless of the stage of the disease, concerned loss of motivation and withdrawal. The patient's awareness of the disorder was accompanied by a reduction in motor dysfunction and aggressiveness, but associated with a higher frequency of the complaint regarding loss of motivation reported by the caregiver. The caregivers' problems concerned mainly the absence of relief and the impossibility of having any time to themselves. Caregivers' requests for information concerned medical information, care structures and day care facilities. The attending physician comes into close contact with the patient, but must take into account the patient's environment. The physician can provides a separate analysis to the caregiver and does not completely answer to certain family questions or needs. He or she is not the family's prime source of information. The caregivers' requirements relate to the areas that are the attending physician's responsibility: the development and characteristics of the disease. The caregiver is anxious about the patient's future and is trapped by his or her involvement in the care, suffering greatly from the lack of relief. It is necessary to change the focus of home

The Prince Henry Hospital dementia caregivers' training programme.

PubMed

Brodaty, H; Gresham, M; Luscombe, G

1997-02-01

To describe the theory, elements and practice of a successful caregiver training programme; and report the 8-year outcome. Prospective, randomized control trial and longitudinal follow-up over approximately 8 years. Psychiatry unit, general teaching hospital, Sydney, Australia. 96 persons less than 80 years old with mild to moderate dementia and their cohabiting caregivers. All patients received a 10-day structured memory retraining and activity programme. Caregivers in the immediate and wait-list caregiver training groups received a structured, residential, intensive 10-day training programme, boosted by follow-ups and telephone conferences over 12 months. Those in the wait-list group entered the programme after waiting 6 months. The third group of caregivers received 10 days' respite (while patients underwent their memory retraining programme) and 12 months booster sessions as for the other groups. Nursing home admission; time until patient death. 64% of patients whose caregivers were in the immediate training group, 53% of wait-list group patients and 70% of memory retraining patients had died. Nursing home admission had occurred in 79% of the immediate training, 83% of the delayed and 90% of the memory retraining group. Eight-year survival analysis indicated that patients whose caregivers received training stayed at home significantly longer (p = 0.037) and tended to live longer (p = 0.08). Caregiver training programmes demonstrably can delay institutionalization of people with dementia.

Memory and communication support in dementia: research-based strategies for caregivers.

PubMed

Smith, Erin R; Broughton, Megan; Baker, Rosemary; Pachana, Nancy A; Angwin, Anthony J; Humphreys, Michael S; Mitchell, Leander; Byrne, Gerard J; Copland, David A; Gallois, Cindy; Hegney, Desley; Chenery, Helen J

2011-03-01

Difficulties with memory and communication are prominent and distressing features of dementia which impact on the person with dementia and contribute to caregiver stress and burden. There is a need to provide caregivers with strategies to support and maximize memory and communication abilities in people with dementia. In this project, a team of clinicians, researchers and educators in neuropsychology, psychogeriatrics, nursing and speech pathology translated research-based knowledge from these fields into a program of practical strategies for everyday use by family and professional caregivers. From the available research evidence, the project team identified compensatory or facilitative strategies to assist with common areas of difficulty, and structured these under the mnemonics RECAPS (for memory) and MESSAGE (for communication). This information was adapted for presentation in a DVD-based education program in accordance with known characteristics of effective caregiver education. The resultant DVD comprises (1) information on the nature and importance of memory and communication in everyday life; (2) explanations of common patterns of difficulty and preserved ability in memory and communication across the stages of dementia; (3) acted vignettes demonstrating the strategies, based on authentic samples of speech in dementia; and (4) scenarios to prompt the viewer to consider the benefits of using the strategies. Using a knowledge-translation framework, information and strategies can be provided to family and professional caregivers to help them optimize residual memory and communication in people with dementia. Future development of the materials, incorporating consumer feedback, will focus on methods for enabling wider dissemination.

Psychometric properties of the Valued Living Questionnaire Adapted to Dementia Caregiving.

PubMed

Romero-Moreno, R; Gallego-Alberto, L; Márquez-González, M; Losada, A

2017-09-01

Caring for a relative with dementia is associated with physical and emotional health problems in caregivers. There are no studies analysing the role of personal values in the caregiver stress process. This study aims to analyse the psychometric properties of the Valued Living Questionnaire Adapted to Caregiving (VLQAC), and to explore the relationship between personal values and stressors, coping strategies and caregiver distress. A total of 253 individual interviews with caregivers of relatives with dementia were conducted, and the following variables were assessed: personal values, stressors, cognitive fusion, emotional acceptance, depression, anxiety, and satisfaction with life. An exploratory factor analysis and hierarchical regression analyses were carried out. Two factors were obtained, Commitment to Own Values and Commitment to Family Values which explain 43.42% of variance, with reliability coefficients (Cronbach's alpha) of .76 and .61, respectively. Personal values had a significant effect on emotional distress (depression and anxiety) and satisfaction with life, even when controlling for socio-demographic variables, stressors and coping strategies. Results suggest that the personal values construct of dementia caregivers is two-dimensional. The personal values of the caregivers play an important role in accounting for distress and satisfaction with life in this population.

A randomized trial using telehealth technology to link caregivers with dementia care experts for in-home caregiving support: FamTechCare protocol.

PubMed

Williams, Kristine; Blyler, Diane; Vidoni, Eric D; Shaw, Clarissa; Wurth, JoEllen; Seabold, Denise; Perkhounkova, Yelena; Van Sciver, Angela

2018-06-01

The number of persons with dementia (PWD) in the United States is expected to reach 16 million by 2050. Due to the behavioral and psychological symptoms of dementia, caregivers face challenging in-home care situations that lead to a range of negative health outcomes such as anxiety and depression for the caregivers and nursing home placement for PWD. Supporting Family Caregivers with Technology for Dementia Home Care (FamTechCare) is a multisite randomized controlled trial evaluating the effects of a telehealth intervention on caregiver well-being and PWD behavioral symptoms. The FamTechCare intervention provides individualized dementia-care strategies to in-home caregivers based on video recordings that the caregiver creates of challenging care situations. A team of dementia care experts review videos submitted by caregivers and provide interventions to improve care weekly for the experimental group. Caregivers in the control group receive feedback for improving care based on a weekly phone call with the interventionist and receive feedback on their videos at the end of the 3-month study. Using linear mixed modeling, we will compare experimental and control group outcomes (PWD behavioral symptoms and caregiver burden) after 1 and 3 months. An exploratory descriptive design will identify a typology of interventions for telehealth support for in-home dementia caregivers. Finally, the cost for FamTechCare will be determined and examined in relation to hypothesized effects on PWD behavioral symptoms, placement rates, and caregiver burden. This research will provide the foundation for future research for telehealth interventions with this population, especially for families in rural or remote locations. © 2018 Wiley Periodicals, Inc.

Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study.

PubMed

Davies, Nathan; Rait, Greta; Maio, Laura; Iliffe, Steve

2017-09-01

People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Qualitative study using in-depth interviews and analysed using thematic analysis. Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

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

Caregiving experiences of family members of persons with dementia in south India.

PubMed

Narayan, Suzanne M; Varghese, Mathew; Hepburn, Kenneth; Lewis, Marsha; Paul, Isabel; Bhimani, Rozina

2015-08-01

This study reports on the first phase of an investigation aimed at adapting The Savvy Caregiver program, a successful family caregiving curriculum developed in the United States, for application in South India. Thirty family members caring for a person with dementia were interviewed regarding their experiences as caregivers (CGs). Qualitative interviews were conducted with the family member at a geriatric clinic, while other diagnostic procedures were being carried out with the person with dementia. Findings from the study revealed that although family members understood the term CG, none could identify a word for CG in his or her language. There was little understanding of dementia as an illness. Family CGs reported feeling distressed, overwhelmed, and frustrated with caregiving. Caregivers were interested in an educational program, but many had unrealistic expectations for what they wanted to learn. The findings provide directions for adapting The Savvy Caregiver curriculum for Indian family CGs. © The Author(s) 2015.

"There isn't an easy way of finding the help that's available." Barriers and facilitators of service use among dementia family caregivers: a qualitative study.

PubMed

Macleod, Ashley; Tatangelo, Gemma; McCabe, Marita; You, Emily

2017-05-01

Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia. Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis. Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers' beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an "expert" point of contact, and having beliefs about the caregiving role that enabled the use of services. Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.

Interventions for caregivers of persons with dementia: a systematic review.

PubMed

Peacock, Shelley C; Forbes, Dorothy A

2003-12-01

The prevalence of dementia in older adults in increasing. Due to cuts in funding for formal support, many families are having to provide care for a loved one with dementia at home. This systematic review gathered and synthesized information on interventions designed to enhance the well-being of caregivers of people with dementia. A search of the literature resulted in 36 relevant studies. Of these, 11 were rated as strong, 11 as moderate, 13 as weak, and 1 as poor. This paper focuses on the strong studies. No one intervention had an overall significant impact on the well-being of caregivers. Although several interventions have been shown to be of benefit to caregivers, non-significant findings were more common. Further investigation is greatly needed. Systematic reviews are an important means of guiding consumers and practitioners in making evidence-based decisions.

Characteristics and underlying meaning of hoarding behavior in elders with Alzheimer's dementia: caregivers' perspective.

PubMed

Wang, Jing-Jy; Feldt, Karen; Cheng, Wen-Yun

2012-09-01

Dementia and its associated problem behaviors remain bothersome to family and professional caregivers. Exploring characteristics and the underlying meaning of disruptive behaviors in elders with Alzheimer's dementia can be a first step to pursuing patient-centered care. Although hoarding is relatively harmless, unattended excessive hoarding can create health and safety issues for both patients and caregivers. This study examined the characteristics and underlying meaning of hoarding behavior among Taiwanese elders with Alzheimer's dementia from the perspective of family caregivers. We used an exploratory research design and purposive sampling. A total of 12 family caregivers of elders with Alzheimer's dementia received qualitative interview. We used one-on-one in-depth interviews to collect data and content analysis to analyze data. Three main characteristics related to hoarding behavior emerged from the data were "influence of former and current symptoms," "recurrence of the original personal characteristics and habits," and "re-experiencing past economic crises." These three characteristics reflected patients' past social and family background and the current life situation. We elicited "a desire for security" as the underlying meaning of hoarding behavior. Findings of this study provide a reference for family and professional care providers to understand dementia-related problem behaviors. Improved caregiver understanding of dementia patient behaviors may help improve caregiver-patient interaction and communication and help caregivers better meet patient needs.

The Dementia Services Mini-Screen: A Simple Method to Identify Patients and Caregivers Needing Enhanced Dementia Care Services

PubMed Central

Borson, Soo; Scanlan, James M.; Sadak, Tatiana; Lessig, Mary; Vitaliano, Peter

2014-01-01

Objective The National Alzheimer’s Plan calls for targeted health system change to improve outcomes for persons with dementia and their family caregivers. We explored whether dementia-specific service needs and gaps could be predicted from simple information that can be readily acquired in routine medical care settings. Method Primary family caregivers for cognitively impaired older adults (n=215) were asked about current stress, challenging patient behaviors, and prior-year needs and gaps in 16 medical and psychosocial services. Demographic data, caregiver stress, and patient clinical features were evaluated in regression analyses to identify unique predictors of service needs and gaps. Results Caregiver stress and patient behavior problems together accounted for an average of 24% of the whole-sample variance in total needs and gaps. Across all analyses, including total, medical, and psychosocial services needs and gaps, all other variables combined (comorbid chronic disease, dementia severity, age, caregiver relationship, and residence) accounted for an accounted for a mean of 3%, with no variable yielding more than 4% in any equation. We combined stress and behavior problem indicators into a simple screen. In early/mild dementia dyads (n=111) typical in primary care settings, the screen identified gaps in total and psychosocial care in 84% and 77%, respectively, of those with high stress/high behavior problems vs. 25% and 23%, respectively, of those with low stress/low behavior problems. Medical care gaps were dramatically higher in high stress/high behavior problem dyads (66%) than all others (12%). Conclusion A simple tool (likely completed in 1–2 minutes) which combines caregiver stress and patient behavior problems, the Dementia Services Mini-Screen, could help clinicians rapidly identify high need, high gap dyads. Health care systems could use it to estimate population needs for targeted dementia services and facilitate their development. PMID:24315560

Theorizing How Art Gallery Interventions Impact People With Dementia and Their Caregivers.

PubMed

Camic, Paul M; Baker, Erin L; Tischler, Victoria

2016-12-01

Dementia refers to a variety of diseases that are characterized by cognitive difficulties and an overall decline in daily living skills. Psychologically informed arts and health programs may be particularly beneficial ways of improving the lives of people with dementia and their caregivers. This study sought to better understand how programs at contemporary and traditional art galleries might play a role in the lives of people with dementia. Participants included 12 people with mild-to-moderate dementia, their 12 caregivers and 4 gallery facilitators. Those with dementia and their caregivers were engaged in art viewing followed by art making over an 8-week period. Data, collected through postintervention interviews with participants, field notes and extensive written communication between the facilitators and research team, were analyzed using grounded theory methodology to theorize how gallery-based interventions affect people with dementia and those who care for them. The emerging theory has four primary components: the art gallery is seen as being a physically valued place that provides intellectual stimulation and offers opportunities for social inclusion that can change how dementia is perceived. These components coalesced to create positive emotional and relational effects for those with dementia and caregivers. The resulting theory has potential implications for the use of gallery-based programs in dementia care within public health, healthcare, and museum/art gallery policy and practice. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Caring for seniors living with dementia means caring for their caregivers too.

PubMed

Poirier, Annie; Voyer, Philippe; Légaré, France; Morin, Michèle; Witteman, Holly O; Kröger, Edeltraut; Martineau, Bernard; Rodríguez, Charo; Giguere, Anik Mc

2018-01-22

To improve the care of seniors living with dementia, current initiatives typically target better identification and treatment of the patient. Our recent survey, however, shows we should also focus more on the needs of the informal caregivers who care for this population in primary care settings. This three-round Delphi survey sought caregivers' views on the most frequent and difficult decisions that seniors with dementia, their informal caregivers, and health care providers face in primary care settings in the province of Quebec. Respondents consisted of 31 health care professionals, informal caregivers, managers, representatives of community-based organizations devoted to these seniors, and clinical researchers involved in the organization of care or services to seniors with dementia. When we asked respondents to rank 27 common but difficult decisions involving benefit/harm trade-offs, 83% ranked the decision to choose an option to reduce the burden of informal caregivers as one of the five most important decisions. Choosing a treatment to manage agitation, aggression or psychotic symptoms followed closely, with 79% of respondents selecting it as one of the five most important decisions. Our results point to the importance of attending to the needs of informal caregivers and improving the management of behavioural and psychological symptoms of dementia.

Gratitude and coping among familial caregivers of persons with dementia.

PubMed

Lau, Bobo Hi-Po; Cheng, Cecilia

2017-04-01

Gratitude is widely perceived as a key factor to psychological well-being by different cultures and religions. The relationship between gratitude and coping in the context of familial dementia caregiving has yet to be investigated. This study is the first to examine the associations among gratitude, coping strategies, psychological resources and psychological distress using a structural equation modelling approach. Findings with 101 Chinese familial caregivers of persons with dementia (mean age = 57.6, range = 40-76; 82% women) showed that gratitude was related to the greater use of emotion-focused coping (positive reframing, acceptance, humour, emotional social support seeking, religious coping) and psychological resources (caregiving competence and social support). Psychological resources and emotion-focused coping in turn explained the association between gratitude and lower levels of psychological distress (caregiving burden and depressive symptoms). The present results indicate the beneficial role of gratitude on coping with caregiving distress and provide empirical foundation for incorporating gratitude in future psychological interventions for caregivers.

Caregiving for Alzheimer's Disease or Other Dementia

MedlinePlus

... What's this? Submit Button Caregiving for Person with Alzheimer's Disease or a related Dementia Recommend on Facebook Tweet Share Compartir What is Alzheimer’s Disease? Alzheimer’s disease is the most common form ...

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

Characteristics and mental health of Hispanic dementia caregivers in New York City.

PubMed

Luchsinger, José A; Tipiani, Dante; Torres-Patiño, Gabriela; Silver, Stephanie; Eimicke, Joseph P; Ramirez, Mildred; Teresi, Jeanne; Mittelman, Mary

2015-09-01

Dementia prevalence and related caregiving burden are increasing, particularly among Hispanics. We studied the characteristics and mental health of Hispanic caregivers in New York City. We recruited 139 Hispanic family caregivers. We collected data on sociodemographic characteristics and predictors of caregiver burden, measured with the Zarit Caregiver Burden Scale, and depressive symptoms, measured with the Geriatric Depression Scale. The mean age was 59.3 ± 10.4 years. The majority of caregivers were daughters and earned less than US$30 000 a year. In multivariate analyses with linear regression, lower satisfaction with social networks was associated with higher caregiver burden and a greater number of depressive symptoms. Higher dementia severity was associated with higher caregiver burden, while higher caregiver comorbidities were associated with higher depressive symptoms. Caregiver comorbidities and satisfaction with social support may be targets for intervention that could improve caregiver burden and depressive symptoms among Hispanic caregivers. © The Author(s) 2015.

Living With Dementia: An Exploratory Study of Caregiving in a Chinese Family Context.

PubMed

Wong, Oi Ling; Kwong, Ping Sum; Ho, Candis Ka Yan; Chow, Susanna Miu Yee; Kwok, Timothy; Wong, Bel; Ho, Vennus; Lau, Andrew; Ho, Florence

2015-01-01

This qualitative study explored themes that described families taking care of elderly relatives with dementia in Chinese society. Ten families were invited for two in-depth family interviews involving spousal caregivers, child caregivers, and care recipients. Five themes resulted: positive affection as coping strategies, power and control in the caregiving relationship, adult children's involvement in caregiving, sibling rivalry, and intergenerational conflicts. The ways these themes functioned and helped in dementia care, the research implications, and limitations are discussed.

Need for Resourcefulness Training for Women Caregivers of Elders with Dementia.

PubMed

Zauszniewski, Jaclene A; Lekhak, Nirmala; Yolpant, Wichiya; Morris, Diana L

2015-01-01

Nearly ten million American women are caregivers of elders with dementia and may experience overwhelming stress that adversely affects their mental health. Interventions to teach them resourcefulness skills for managing stress can promote optimal mental health and facilitate continued caregiving. However, effectiveness of resourcefulness training (RT) cannot be examined until its need is established. This pilot trial with 138 women caregivers of someone with dementia examined the need for RT using subjective and objective data. Data were collected before and after RT. Data analysis focused on baseline resourcefulness scores (higher scores = lower need); scores in relation to attrition; correlations among resourcefulness, stress, and depressive symptoms; and post-RT evaluation of the need for RT. Baseline resourcefulness scores were normally distributed and showed that 74% of the caregivers had a moderate to high need for RT. Reasons for attrition were unrelated to the need for RT; however, caregivers who dropped out had resourcefulness scores that averaged two points higher than those who remained in the study. Lower resourcefulness was associated greater stress (r = -.37, p < .001) and depressive symptoms (r = -.52, p < .001). Of the 63 caregivers who received RT, 82% (n = 52) reported a felt need for RT and 94% (n = 59) believed that other caregivers need RT. The results suggest a substantial need for resourcefulness training in women dementia caregivers and support moving forward to test RT's effectiveness for reducing caregiver stress and depressive symptoms.

Effectiveness of coping strategies intervention on caregiver burden among caregivers of elderly patients with dementia.

PubMed

Chen, Hui-Mei; Huang, Mei-Feng; Yeh, Yi-Chun; Huang, Wen-Hui; Chen, Cheng-Sheng

2015-03-01

Coping strategies are a potential way to improve interventions designed to manage the caregiver burden of dementia. The purpose of this study was to develop an intervention targeted towards improving coping strategies and to examine its effectiveness on reducing caregiver burden. A controlled study design was used. Fifty-seven caregivers of dementia patients were enrolled. Coping strategies were assessed with the Revised Ways of Coping Checklist (WCCL-R) and caregiver burden was assessed with the Chinese version of the Caregiver Burden Inventory. The participants were randomly divided into two groups. The intervention group was offered a series of five interventions in which problem-solving skills, knowledge of dementia, social resources, and emotional support were taught every 2 weeks, and the control group was telephoned every 2 weeks for the usual clinical management. Two weeks after the end of the intervention, we again administered the WCCL-R and the Caregiver Burden Inventory. Two-way repeated-measure anova was used to evaluate the changes in coping strategies and caregiver burden. Forty-six participants completed the study. No statistically significant differences were noted in the demographic data between the two groups. On the problem-focused coping subscale on the WCCL-R, the intervention group's mean score increased by 3.8 points, and the control group's decreased by 5.1 points (F = 7.988, P = 0.007). On the seeking social support coping subscale on the WCCL-R, the intervention group's mean score increased by 3.8 points, and the control group's decreased by 3.1 points (F = 4.462, P = 0.04). On the Caregiver Burden Inventory, the intervention group's mean score decreased by 7.2 points, and the control group's increased by 2.2 points (F = 6.155, P = 0.017). Psychosocial intervention can help caregivers to adopt more problem-focused and social support coping strategies, which are beneficial in terms of reducing the caregiver

[The internet as an information source for family caregivers of dementia patients].

PubMed

Grässel, Elmar; Bleich, Stefan; Meyer-Wegener, Klaus; Schmid, Ute; Kornhuber, Johannes; Prokosch, Hans-Ulrich

2009-04-01

What significance has the Internet as a source of information for family caregivers of dementia patients? In Middle Franconia (Germany), 391 family caregivers were requested to participate in a questionnaire-based postal survey about the significance of the Internet and other sources of information on dementia. The family caregivers in question were the relatives of patients of the Memory Clinic at Erlangen University Psychiatric Hospital, members of the Alzheimer's Society of Middle Franconia or the Nuremberg Family Counselling Society. Younger and better-educated family caregivers more often own a computer with Internet access than older ones. The Internet is in 4th place on their list of sources of information. Although doctors are by far the most important source, counselling centres and literature are rated only just before the Internet. The Internet is particularly significant for the younger better-educated family caregivers, independent of gender, as a source of information on the diagnosis and treatment of dementia.

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

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

PubMed

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

2013-10-22

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. 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. 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. 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.

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

Collaborative care management reduces disparities in dementia care quality for caregivers with less education.

PubMed

Brown, Arleen F; Vassar, Stefanie D; Connor, Karen I; Vickrey, Barbara G

2013-02-01

To examine educational gradients in dementia care and whether the effect of a dementia collaborative care management intervention varied according to the educational attainment of the informal caregiver. Analysis of data from a cluster-randomized controlled trial. Eighteen clinics in three healthcare organizations in southern California. Dyads of Medicare recipients aged 65 and older with a diagnosis of dementia and an eligible caregiver. Collaborative care management for dementia. Caregiver educational attainment, adherence to four dimensions of guideline-recommended processes of dementia care (assessment, treatment, education and support, and safety) before and after the intervention, and the adjusted intervention effect (IE) for each dimension stratified according to caregiver education. Each IE was estimated by subtracting the difference between pre- and postintervention scores for the usual care participants from the difference between pre- and postintervention scores in the intervention participants. At baseline, caregivers with lower educational attainment provided poorer quality of dementia care for the Treatment and Education dimensions than those with more education, but less-educated caregivers had significantly more improvement after the intervention on the assessment, treatment, and safety dimensions. The IEs for those who had not graduated from high school were 44.4 for the assessment dimension, 36.9 for the treatment dimension, and 52.7 for the safety dimension, versus 29.5, 15.7, and 40.9 respectively, for college graduates (P < .001 for all three). Collaborative care management was associated with smaller disparities in dementia care quality between caregivers with lower educational attainment and those with more education. © 2013, Copyright the Authors Journal compilation © 2013, The American Geriatrics Society.

Does working with the Veder Contact Method influence the job satisfaction of caregivers? A non-randomized controlled trial in nursing homes for people with dementia.

PubMed

Boersma, P; Dröes, R M; Lissenberg-Witte, B I; van Meijel, B; van Weert, J C M

2017-12-01

Person-centered care interventions can improve the quality of life and decrease behavioral problems of people with dementia. Although not convincingly proven, person-centered care interventions may benefit the caregivers as well. This study aims to gain insight into how working with the Veder Contact Method (VCM) - a new person-centered care method - influences the job satisfaction of caregivers. Within a quasi-experimental study, the job satisfaction of caregivers of six experimental wards (n = 75) was compared with caregivers of six control wards (n = 36) that applied Care-As-Usual. The Leiden Quality of Work Questionnaire (LQWQ) was filled in by caregivers in both conditions. Additionally, on the experimental wards, qualitative research, i.e. focus groups with 42 caregivers and interviews with 11 managers, was conducted to obtain a deeper understanding of the influence of applying VCM on caregivers' job satisfaction. The transcripts were analyzed using deductive analysis. No quantitatively significant differences were found on the subscales of the LQWQ: work and time pressure, job satisfaction, autonomous decision making, social support from colleagues, and social support from supervisors. From the qualitative research, some caregivers and managers reported that implementing VCM contributed to their job satisfaction and that applying VCM supported handling difficult behavior and depressed mood of residents and contributed to team building. No significant effects on job satisfaction were demonstrated. Qualitative findings indicate that VCM positively influences the daily work performances of nursing home caregivers. The relation between the experience of offering quality care and job satisfaction of caregivers needs further investigation.

Balancing competing needs mediates the association of caregiving demand with caregiver role strain and depressive symptoms of dementia caregivers: A cross-sectional study.

PubMed

Liu, Hsin-Yun; Yang, Ching-Tzu; Wang, Yu-Nu; Hsu, Wen-Chuin; Huang, Tzu-Hsin; Lin, Yueh-E; Liu, Chin-Yi; Shyu, Yea-Ing L

2017-12-01

To examine the role of balancing competing needs in the relationship between caregiving demand and caregiving outcomes (caregivers' role strain and depressive symptoms). Caregivers who do not balance competing needs are more likely to experience negative caregiving outcomes, suggesting that balance mediates between caregiving demand and caregiving outcomes. Identifying a mediator of negative caregiving effects may help in developing tailored interventions for family caregivers of persons with dementia. A cross-sectional, correlational design. Data were collected from family caregivers' self-completed questionnaires between March 2013 - April 2014. A convenience sample of 120 family caregivers and care receivers with dementia was enrolled. We examined whether balance mediated the relationship between caregiving demand and caregiving outcomes (caregivers' role strain and depressive symptoms) by multiple regression analysis. To evaluate the significance of the indirect effect of caregiver balance, we used the Sobel test and Monte Carlo method, an alternative approach to testing mediation. Balancing competing needs completely mediated the association of caregiving demand with depressive symptoms and partially mediated the association of caregiving demand with role strain. Assessing caregivers' self-perceived sense of balance may help to identify caregivers at high risk for role strain and depressive symptoms. Interventions to enhance caregivers' perceived sense of balance between competing needs may provide a strategy for reducing the negative effects of caregiving. © 2017 John Wiley & Sons Ltd.

Strategies for sustaining self used by family caregivers for older adults with dementia.

PubMed

Bull, Margaret J

2014-06-01

The negative health consequences of caring for an older adult family member with dementia are well documented. However, not all family caregivers experience these negative health consequences. The purposes of this study were to describe strategies family caregivers use to help them continue to provide care for an older family member with dementia despite challenges and describe these family caregivers' resilience and psychological distress. A mixed methods design was used with a narrative approach dominant and standardized scales for resilience and psychological distress used to enhance the description of the sample. Data were collected through telephone interviews with 18 family caregivers residing in an urban area. The findings indicate that family caregivers used four strategies to sustain the self: drawing on past life experiences, nourishing the self, relying on spirituality, and seeking information about dementia. Understanding strategies used by family caregivers to sustain themselves is essential for providing holistic nursing care and developing effective interventions.

At the intersection of culture: Ethnically diverse dementia caregivers' service use.

PubMed

Richardson, Virginia E; Fields, Noelle; Won, Seojin; Bradley, Evie; Gibson, Allison; Rivera, Gretchen; Holmes, Sarah D

2017-01-01

This study used an ethnocultural approach to explore how cultural factors influenced ethnically diverse dementia caregivers' experiences and use of services. A modified thematic analysis of in-depth interviews with 15 caregivers, ranging in age from 50 to 75 years, including spouses, daughters, sons, cousins, and a friend, from three minority groups-African American, Hispanic, and South Korean caregivers-was conducted by a team of multi-lingual researchers. Caregiver stress was pervasive across all subgroups. Several themes emerged that were qualitatively different across groups, including knowledge about dementia, language barriers, religion and spirituality, and cultural differences in attitudes about caring and formal services. A two-pronged intervention model that includes a generic intervention to reduce caregiver stress along with a culturally targeted intervention tailored to a family's language, food preferences, religious practices, gender norms, and other values was recommended to more successfully reach and support these caregivers.

Compassion Fatigue in Adult Daughter Caregivers of a Parent with Dementia

PubMed Central

Day, Jennifer R.; Anderson, Ruth A.; Davis, Linda L.

2015-01-01

Adult daughters face distinct challenges caring for parents with dementia and may experience compassion fatigue: the combination of helplessness, hopelessness, an inability to be empathic, and a sense of isolation resulting from prolonged exposure to perceived suffering. Prior research on compassion fatigue has focused on professional healthcare providers and has overlooked filial caregivers. This study attempts to identify and explore risk factors for compassion fatigue in adult daughter caregivers and to substantiate further study of compassion fatigue in family caregivers. We used content analysis of baseline interviews with 12 adult daughter caregivers of a parent with dementia who participated in a randomized trial of homecare training. Four themes were identified in adult daughter caregiver interviews: (a) uncertainty; (b) doubt; (c) attachment; and (d) strain. Findings indicated adult daughter caregivers are at risk for compassion fatigue, supporting the need for a larger study exploring compassion fatigue in this population. PMID:25259643

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…

Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia.

PubMed

Jokinen, Nancy; Gomiero, Tiziano; Watchman, Karen; Janicki, Matthew P; Hogan, Mary; Larsen, Frode; Beránková, Anna; Heloísa Santos, Flávia; Service, Kathy; Crowe, Jim

2018-01-01

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the "diagnostic phase," (2) the "explorative phase," (3) the "adaptive phase," and (4) the "closure phase." The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.

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…

Beyond Strain: Personal Strengths and Mental Health of Mexican and Argentinean Dementia Caregivers.

PubMed

Sutter, Megan; Perrin, Paul B; Peralta, Silvina Victoria; Stolfi, Miriam E; Morelli, Eliana; Peña Obeso, Leticia Aracely; Arango-Lasprilla, Juan Carlos

2016-07-01

Life expectancy is increasing in Latin America resulting in the need for more family caregivers for older adults with dementia. The purpose of the current study was to examine the relationships between personal strengths (optimism, sense of coherence [SOC], and resilience) and the mental health of dementia caregivers from Latin America. Primary family dementia caregivers (n = 127) were identified via convenience sampling at the Instituto de Neurociencias de San Lucas, Argentina, and CETYS University, in Baja California, Mexico and completed measures of these constructs. Personal strengths explained between 32% and 50% of the variance in caregiver mental health. In a series of hierarchical multiple regressions, more manageability (β = -.38, p = .001), general resilience (β = -.24, p = .012), and social competence (β = -.21, p = .034) were uniquely associated with lower depression. Greater comprehensibility (β = -.28, p = .008) was uniquely associated with decreased burden, and manageability was marginally related (β = -.21, p< .10). Greater optimism (β = .37, p< .001) and manageability (β = .27, p = .004) were uniquely associated with increased life satisfaction. The personal strengths of caregivers in Latin America may be particularly important for their mental health because of the culturally imbedded sense of duty toward older family members. Incorporating strengths-based approaches into research on caregiver interventions in regions where caregiving is a highly culturally valued role such as Latin America may have the potential to improve the mental health of dementia caregivers. © The Author(s) 2015.

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…

Modeling the Distress of Spousal Caregivers of People with Dementia.

PubMed

Wawrziczny, Emilie; Berna, Guillaume; Ducharme, Francine; Kergoat, Marie-Jeanne; Pasquier, Florence; Antoine, Pascal

2017-01-01

The progressive mobilization of spouse caregivers who take care of a person with dementia (PWD) can lead to situations of distress. The current study sought to investigate the influence of the characteristics of the caregiving context on spousal caregiver distress. 125 spousal caregivers participated in this study. The characteristics of the caregiving context were assessed using questionnaires. We examined a moderated-mediator model (Step 1) in which we hypothesized that PWD and caregiver characteristics and dyadic determinants contribute to spousal caregiver distress. This model was compared based on the age at onset of the disease and the gender of the caregiver (Step 2). The model revealed that poor self-rated health and a lack of family support accentuated spousal caregiver distress, whereas the feeling of being prepared and level of confidence decreased spousal caregiver distress. Moreover, the quality of couple adjustment affected spousal caregiver distress, and this effect was mediated by the severity of the PWD's symptoms. Regarding the age at onset of the disease, the path between Couple Adjustment and the Care recipient's impairments was more important for caregivers of person with early-onset dementia (PEOD). Female caregivers who reported poor self-rated health experienced greater distress. It would be interesting to create a support program that would incorporate these three areas of intervention regarding the progression of the disease: first, "preparedness modules"; second, "dyadic modules" (especially for caregivers of PEOD); and third, "family modules". Specific attention should be given to female caregivers who report poor self-rated health.

Association between caregiver depression and individual behavioral and psychological symptoms of dementia in Taiwanese patients.

PubMed

Huang, Si-Sheng; Liao, Yi-Cheng; Wang, Wen-Fu

2015-09-01

The aim of this study was to investigate caregiver depression associated with neuropsychiatric symptoms in Taiwanese people. A cross-sectional design was used in this study. Two hundred seventy-six pairs of patients with dementia and their caregivers who visited the memory clinic of a general hospital from July 2001 to October 2008 were recruited. Caregiver depression was evaluated with the Center for Epidemiologic Studies Depression Scale (CES-D); the behavioral and psychological symptoms of dementia were evaluated using the Neuropsychiatric Inventory. Demographic data of the patients and caregivers, including cognitive functions and clinical dementia ratings, were collected. In addition to descriptive statistics, we examined the relationship between each parameter and caregiver depression using Pearson correlation, independent t-test, or analysis of variance. The results showed a statistically significant positive correlation between the total Neuropsychiatric Inventory score and CES-D score (r = 0.345, P < 0.001) in the bivariate analyses. For individual behavioral and psychological symptoms of dementia, agitation/aggression, anxiety, nighttime behavior disturbances, irritability/lability, and hallucinations were the five leading symptoms significantly associated with caregiver depression (CES-D). Carefully managing these symptoms is likely to reduce depression in dementia caregivers. © 2015 Wiley Publishing Asia Pty Ltd.

Modification of dysfunctional thoughts about caregiving in dementia family caregivers: description and outcomes of an intervention programme.

PubMed

Márquez-González, M; Losada, A; Izal, M; Pérez-Rojo, G; Montorio, I

2007-11-01

Among the diverse group of interventions developed to help dementia family caregivers cognitive-behavioural approaches show especially promising results. This study describes a cognitive-behavioural group intervention aimed principally at the modification of dysfunctional thoughts associated with caregiving (MDTC). The efficacy of the MDTC intervention in reducing caregivers' depressive symptomatology, together with the frequency and appraisal of problem behaviours, is compared to that of a waiting-list control group (WL). Furthermore, the potential mediating role of the dysfunctional thoughts in the relationship between this intervention and caregivers' depressive symptomatology is analyzed. Of the 74 dementia caregivers who were randomized to one of two conditions (MDTC and WL), 39 completed the post-intervention assessment. Statistical analyses were performed on an intention-to-treat basis, using last observation carried forward. The results reveal that the MDTC intervention is successful in reducing caregivers' level of depressive symptomatology and dysfunctional thoughts about caregiving, as well as in modifying their appraisal of their relative's problem behaviours. Furthermore, a mediating role for dysfunctional thoughts was found in the relationship between the MDTC intervention and levels of depressive symptomatology. The relevance of addressing dysfunctional thoughts and cognitive distortions in group interventions with caregivers is highlighted.

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

Linking family dynamics and the mental health of Colombian dementia caregivers.

PubMed

Sutter, Megan; Perrin, Paul B; Chang, Yu-Ping; Hoyos, Guillermo Ramirez; Buraye, Jaqueline Arabia; Arango-Lasprilla, Juan Carlos

2014-02-01

This cross-sectional, quantitative, self-report study examined the relationship between family dynamics (cohesion, flexibility, pathology/ functioning, communication, family satisfaction, and empathy) and mental health (depression, burden, stress, and satisfaction with life [SWL]) in 90 dementia caregivers from Colombia. Hierarchical multiple regressions controlling for caregiver demographics found that family dynamics were significantly associated with caregiver depression, stress, and SWL and marginally associated with burden. Within these regressions, empathy was uniquely associated with stress; flexibility with depression and marginally with SWL; and family communication marginally with burden and stress. Nearly all family dynamic variables were bivariately associated with caregiver mental health variables, such that caregivers had stronger mental health when their family dynamics were healthy. Family-systems interventions in global regions with high levels of familism like that in the current study may improve family empathy, flexibility, and communication, thereby producing better caregiver mental health and better informal care for people with dementia.

The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives

PubMed Central

Roberts, Emily; Struckmeyer, Kristopher M.

2018-01-01

Family members with a relative with dementia often experience what has been called the “unexpected career of caregiver” and face multifaceted, complex, and stressful life situations that can have important consequences. This exploratory study was designed to address this major public health challenge through the lens of caregiver resilience and caregiver respite programming. While many caregivers report that they derive significant emotional and spiritual rewards from their caregiving role, many also experience physical and emotional problems directly related to the stress and demands of daily care. One way to alleviate these demands is the growing respite care field, providing services in a variety of settings for caregiver. Through qualitative analysis from face-to-face interviews with 33 family caregivers of individuals with dementia, several themes emerged describing the path to caregiver resilience which include family dynamics, isolation, financial struggles, seeking respite, and acceptance. While much research focuses on a caregiving burden perspective, the innovation of the present study is applying the resilience framework to outcomes from respite programming. PMID:29424252

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.

"The Church of Online Support": Examining the Use of Blogs Among Family Caregivers of Persons With Dementia.

PubMed

Anderson, Joel G; Hundt, Elizabeth; Dean, Morgan; Keim-Malpass, Jessica; Lopez, Ruth Palan

2017-02-01

Many individuals, including dementia caregivers, use blogs to share their experiences. These blogs contain rich narratives representing an untapped resource for understanding the psychosocial impact of caring for a person with dementia at the family level. The present study used blogs written by caregivers of persons with dementia to explore how these individuals leveraged this medium as part of the caregiving experience. Blogs written by self-identified informal caregivers of persons with dementia were identified using a systematic search method, and data were analyzed using a qualitative thematic analysis. Four themes emerged from the narratives: social support through communication and engagement, information gathering and seeking, reminiscing and legacy building, and altruism. By understanding the ways in which individuals providing care for persons with dementia use social media as part of the caregiving experience, family nurses can develop interventions and services aimed at improving caregiver burden and quality of life.

Exploring conflict between caregiving and work for caregivers of elders with dementia: a cross-sectional, correlational study.

PubMed

Wang, Yu-Nu; Shyu, Yea-Ing Lotus; Tsai, Wen-Che; Yang, Pei-Shan; Yao, Grace

2013-05-01

To report the moderating effects of work-related conditions and interactive family-care-giving variables, including mutuality and preparedness, on caregiver role strain and mental health for family caregivers of patients with dementia. Few studies have examined the interrelationships among caregivers' working conditions, care-giving dynamics and caregiver well-being. Cross-sectional, correlational study. Data were collected by self-completed questionnaires from 176 primary family caregivers of patients with dementia in Taiwan from May 2005-January 2006. Caregiver role strain and mental health were analysed by multiple regressions using a hierarchical method to enter independent variables and two- and three-way interaction terms after controlling for caregiver age and gender, employment status, and work flexibility and the simple effect of each independent variable. More preparedness was associated with less role strain for family caregivers with less work/care-giving conflict. More care-giving demand was associated with poorer mental health only for caregivers with low work/care-giving conflict and with average and low preparedness, but not high preparedness. For family caregivers with less work/care-giving conflict, more preparedness decreased role strain and maintained mental health even when care-giving demand was high. These results provide a knowledge base for understanding complex family caregiver phenomena and serve as a guide for developing interventions. Future studies with longitudinal follow-ups are suggested to explore actual causal relationships. © 2012 Blackwell Publishing Ltd.

Evaluation of a Telephone-Delivered, Community-Based Collaborative Care Management Program for Caregivers of Older Adults with Dementia.

PubMed

Mavandadi, Shahrzad; Wray, Laura O; DiFilippo, Suzanne; Streim, Joel; Oslin, David

2017-09-01

To evaluate whether a community-based, telephone-delivered, brief patient/caregiver-centered collaborative dementia care management intervention is associated with improved caregiver and care recipient (CR) outcomes. Longitudinal program evaluation of a clinical intervention; assessments at baseline and 3- and 6-month follow-up. General community. Caregivers (N = 440) of older, community-dwelling, low-income CRs prescribed a psychotropic medication by a primary care provider who met criteria for dementia and were enrolled in the SUpporting Seniors Receiving Treatment And INtervention (SUSTAIN) program for older adults. Dementia care management versus clinical evaluation only. Perceived caregiving burden and caregiver general health (primary outcomes); CR neuropsychiatric symptoms and caregiver distress in response to CRs' challenging dementia-related behaviors (secondary outcomes). Caregivers were, on average, 64.0 (SD: 11.8) years old and 62.6% provided care for the CR for 20 or more hours per week. The majority of the sample was female (73.2%), non-Hispanic White (90.2%), and spousal caregivers (72.5%). Adjusted longitudinal models of baseline and 3- and 6-month data suggest that compared with caregivers receiving clinical evaluation only, caregivers receiving care management reported greater reductions in burden over time. Subgroup analyses also showed statistically significant reductions in caregiver-reported frequency of CR dementia-related behaviors and caregiver distress in response to those symptoms at 3-month follow-up. A community-based, telephone-delivered care management program for caregivers of individuals with dementia is associated with favorable caregiver and CR-related outcomes. Findings support replication and further research in the impact of tailored, collaborative dementia care management programs that address barriers to access and engagement. Published by Elsevier Inc.

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…

Mental health and morbidity of caregivers and co-residents of individuals with dementia: a quasi-experimental design.

PubMed

Maguire, Aideen; Rosato, Michael; O'Reilly, Dermot

2017-10-01

To determine if providing informal care to a co-resident with dementia symptoms places an additional risk on the likelihood of poor mental health or mortality compared with co-resident non-caregivers. A quasi-experimental design of caregiving and non-caregiving co-residents of individuals with dementia symptoms provides a natural comparator for the additive effects of caregiving on top of living with an individual with dementia symptoms. Census records, providing information on household structure, intensity of caregiving, presence of dementia symptoms and self-reported mental health were linked to mortality records over the following 33 months. Multi-level regression models were constructed to determine the risk of poor mental health and death in co-resident caregivers of individuals with dementia symptoms compared with co-resident non-caregivers, adjusting for the clustering of individuals within households. The cohort consisted of 10 982 co-residents (55.1% caregivers), with 12.1% of non-caregivers reporting poor mental health compared with 8.4% of intense caregivers (>20 h of care per week). During follow-up, the cohort experienced 560 deaths (245 to caregivers). Overall, caregiving co-residents were at no greater risk of poor mental health but had lower mortality risk than non-caregiving co-residents (adjusted odds ratio (ORadj) = 0.93, 95% confidence interval (CI) 0.79, 1.10 and ORadj = 0.67, 95% CI 0.56, 0.81, respectively); this lower mortality risk was also seen amongst the most intensive caregivers (ORadj = 0.65, 95% CI 0.53, 0.79). Caregiving poses no additional risk to mental health over and above the risk associated with merely living with someone with dementia and is associated with a lower mortality risk compared with non-caregiving co-residents. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

[The support system for dementia patient and their caregiver with Skype and webcam].

PubMed

Hori, Miyako; Kubota, Masakazu; Kinoshita, Ayae

2008-12-01

The increase in the number of people suffering from dementia because of aging is a serious problem for caregivers since the feature of this pathology is irreversible and advancing. We designed an intervention study with Skype and webcam for patient with dementia being cared at home by their caregiver to prevent a further memory deterioration (seriousness of dementia) and to reduce a care burden as well. For a period of 12 weeks, a 4-patient-caregiver pair communicated with a hospital nurse through the computer for 30 minutes once a week. The patient and the caregiver worked as a pair. From the beginning of the intervention period, the intervention group and control group (n = 4) were assessed with cognitive scale, ADL scale, care burden scale and depression scale for the caregiver, and the like once in 4 weeks for 12 weeks. The initial report on the 8th week showed signs of improvement on the intervention group in HDS-R, also it improved the scale of moral of the caregiver as their scale of depression decreased.

Transitioning from caregiver to visitor in a long-term care facility: the experience of caregivers of people with dementia.

PubMed

Crawford, K; Digby, R; Bloomer, M; Tan, H; Williams, A

2015-01-01

Transitioning from the primary caregiver to the visitor in a long-term care facility may be challenging for the caregiver; they are required to surrender their caring duties to the medical and nursing staff. The aim of this study was to explore the experiences of caregivers during their transition from day-to-day caregiver of a person with dementia to a visitor in a long-term care facility. This study utilised a qualitative descriptive design. Twenty caregivers of people with dementia were recruited from the one Aged Rehabilitation and Geriatric Evaluation and Management facility, located in Victoria, Australia. Semi-structured interviews were used to explore the caregiver's experiences. Interviews were analysed using thematic analysis. The interview data revealed that the participants were undergoing similar experiences. The findings revealed that it was difficult for the caregiver to transition to their new role of visitor; negative reactions of grief, loss of motivation and loneliness were also coupled with positive feelings of relief and the reassurance that their relative or friend would be well cared for and safe within the long-term care facility. The findings offer insight into the experiences felt by caregivers when their relative or friend with dementia is admitted to hospital. Implications of this study include the need to improve the transition process for the caregiver by allowing them to be involved in the decision-making process, keeping them informed of care decisions, and importantly, providing emotional support to help the caregiver positively adapt to this transition.

Helping Dementia Caregivers Manage Medical Problems: Benefits of an Educational Resource.

PubMed

Zimmerman, Sheryl; Sloane, Philip D; Ward, Kimberly; Beeber, Anna; Reed, David; Lathren, Christine; Matchar, Bobbi; Gwyther, Lisa

2018-05-01

Family caregivers of people with dementia must attend to medical care needs of their relative, yet few available resources address comorbidities in dementia. Consequently, caregivers feel ill-equipped when medical concerns arise. In response, an educational resource-Alzheimer's Medical Advisor ( AlzMed)-was developed in 2 forms (website and book) and evaluated. Family caregivers (143 website and 51 book) used an educational resource that provides information on medical problems, vital signs, pain, dehydration, and the healthcare system. Data were collected at baseline, 3 months, and 6 months regarding confidence in sign/symptom management, burden, depression, and anxiety. Caregivers reported significantly improved confidence and (for website users) decreased role strain. Anxiety and depression also decreased, although not significantly. Improved confidence related to a reduction in role strain and anxiety, and care recipients did not experience adverse events. An educational resource focusing on care of comorbid illness may benefit caregiver outcomes.

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. © The Author(s) 2015.

Enhancing caregivers' understanding of dementia and tailoring activities in frontotemporal dementia: two case studies.

PubMed

O'Connor, Claire M; Clemson, Lindy; Brodaty, Henry; Gitlin, Laura N; Piguet, Olivier; Mioshi, Eneida

2016-01-01

The purpose of this study is to describe the intervention process and results of the Tailored Activities Program (TAP) in two people diagnosed with Frontotemporal Dementia (FTD). TAP is an occupational therapy (OT) community-based intervention program that prescribes personalised activities to reduce difficult behaviours of dementia. The OT works with carers over a 4-month period (assessment, activity prescription and generalisation of strategies). Study measures were collected (blind researcher) pre- and post-intervention: cognition, functional disability, behavioural symptoms and Caregiver Confidence and Vigilance. A 51-year-old woman with behavioural-variant FTD could consistently engage in more activities post-intervention, with scores indicating improvements to behaviour, function and caregiver confidence. A 63-year-old man with semantic variant FTD engaged well in the prescribed activities, with scores reflecting reduced carer distress regarding challenging behaviours and improved caregiver vigilance. TAP is efficacious in FTD, allowing for differences in approach for FTD subtype, where behavioural symptoms are very severe and pervasive. The Tailored Activities Program is an intervention which can be tailored to account for unique behavioural and language profiles inherent across frontotemporal dementia (FTD) subtypes. Maintaining a flexible approach when applying an intervention in FTD allows for tailoring to individual case variability within FTD subtypes.

Leisure Activities, Caregiving Demands, and Catecholamine Levels in Dementia Caregivers

PubMed Central

Chattillion, Elizabeth A.; Mausbach, Brent T.; Roepke, Susan K.; von Känel, Roland; Mills, Paul J.; Dimsdale, Joel E.; Allison, Matthew; Ziegler, Michael G.; Patterson, Thomas L.; Ancoli-Israel, Sonia; Grant, Igor

2012-01-01

This study examined whether satisfaction from leisure activities moderates the relationship between caregiving demands (i.e., hours per day spent caring for a spouse with dementia) and resting levels of the catecholamines norepinephrine (NE) and epinephrine (EPI). Spousal caregivers (N=107; mean age 73.95±8.12 years) were assessed in home for plasma levels of NE and EPI, amount of care provided, and leisure satisfaction. Regression was used to determine whether leisure satisfaction moderated the relationship between hours providing care per day and catecholamine levels. A significant interaction was found between hours caregiving and leisure satisfaction for NE, but not for EPI. Post hoc regressions were conducted for both NE and EPI. At low leisure satisfaction, time spent caring for a spouse was positively associated with plasma NE (β = .41; p = .005) and EPI (β = .44; p = .003). In contrast, at high levels of satisfaction, time caregiving was not significantly associated with plasma NE (β = −.08; p = .57) or EPI (β = .23; p = .12). These findings suggest that leisure satisfaction may protect caregivers from increases in catecholamines, which have been implicated in cardiovascular risk. Further support for these findings may impact psychological treatments for distressed caregivers. PMID:22149759

Examining trust in health professionals among family caregivers of nursing home residents with advanced dementia.

PubMed

Boogaard, Jannie A; Werner, Perla; Zisberg, Anna; van der Steen, Jenny T

2017-12-01

In a context of increasing emphasis on shared decision-making and palliative care in dementia, research on family caregivers' trust in health professionals in advanced dementia is surprisingly scant. The aim of the present study was to assess trust in nursing home health professionals of family caregivers of nursing home residents with advanced dementia, and possible correlates, such as family caregivers' satisfaction, involvement in care, care burden and patients' symptom burden. A cross-sectional study was carried out using structured questionnaires administered through the telephone. Generalized estimating equation analyses with adjustment for nursing home clustering were applied to assess the most important associations with family caregivers' trust. A total of 214 family caregivers of persons with dementia residing in 25 nursing homes participated in the study. The majority of the participants (67%) were women and adult children (75%). The majority of the family caregivers trusted physicians, nurses and nurses' aides at a moderate-to-high level. Approximately half to one-third reported moderate-to-low levels of trust. Higher levels of trust were associated with more positive care outcomes, such as higher family satisfaction with care and more positive evaluations of physician-family communication. The present study showed the importance of family caregivers trusting nursing home health professionals for their experiences as caregivers. Although causation cannot be established, increased family caregivers' trust in nursing home health professionals by improving communication and exchange of information might provide a good basis for providing optimal palliative care in advanced dementia. Geriatr Gerontol Int 2017; 17: 2466-2471. © 2017 Japan Geriatrics Society.

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…

Unravelling positive aspects of caregiving in dementia: An integrative review of research literature.

PubMed

Yu, Doris S F; Cheng, Sheung-Tak; Wang, Jungfang

2018-03-01

Family caregiving is the crucial informal care resource to lessen the burdens associated with dementia. Research in this field has focused on reducing the caregiver's burden, but little attention has been given to promoting the positive aspects of caregiving. To conduct a systematic critical review of research on the nature of positive aspects of caregiving, and the factors predicting this phenomenon among family caregivers of dementia patients, with the ultimate purpose of gaining insights to explain how and why it emerges. A systematic search of the literature was undertaken in the databases OvidMedline, CINAHL, PsycINFO, Web of Science and Scopus, using the keywords 'care* AND Alzheimer OR dementia AND 'positive aspect' OR 'positive experience' OR 'positive perceptions' OR reward OR gain OR 'satisfaction with care*' OR 'care* satisfaction' OR benefit OR uplift OR meaning OR enjoyment OR pleasure OR growth OR hope OR gratification. The Critical Appraisal Skills Programme checklists for qualitative and cohort studies were used to evaluate data quality. Narrative data synthesis was undertaken using the five-stage Whittermore and Knafl method. A total of 3862 articles were identified, of which 41 were included in this review. The key findings are that positive aspects of caregiving among family caregivers of dementia patients form a multi-dimensional construct which covers four key domains: a sense of personal accomplishment and gratification, feelings of mutuality in a dyadic relationship, an increase of family cohesion and functionality, and a sense of personal growth and purpose in life. By integrating the findings about the nature and conditions predicting positive aspects of caregiving, the presence of three conditions was identified as promoting the emergence of such qualities i) personal and social affirmation of role fulfilment, ii) effective cognitive emotional regulation and iii) contexts which favour finding meaning in the caregiving process. The findings

The longitudinal effects of early behavior problems in the dementia caregiving career.

PubMed

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

2005-03-01

Using multiregional, 3-year data from early career dementia caregivers, this study determines how behavior problems that occur early in the caregiving career influence time to nursing home placement and change in burden and depression over time. A Cox proportional hazards model indicated that caregivers who managed frequent behavior problems earlier are more likely to institutionalize. After controlling for important time-varying covariates in a series of growth-curve models, caregivers who were faced with severe, early behavior problems reported greater increases in burden and depression over the 3-year study period. The findings suggest the need to consider experiences early in the dementia caregiving career when accounting for key longitudinal outcomes and also emphasize the importance of attrition when attempting to model the health implications of informal long-term care over time.

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. Copyright 2009. Published by Elsevier Ireland Ltd.

Care to Plan: An Online Tool That Offers Tailored Support to Dementia Caregivers.

PubMed

Gaugler, Joseph E; Reese, Mark; Tanler, Richard

2016-12-01

Even with the advent of evidence-based interventions, an ongoing concern in clinical practice is how to help dementia caregivers determine what type of support is best for them absent a laborious process of trial and error. To help address this practice gap, the present study developed and tested the feasibility of "Care to Plan" (CtP), an online resource for dementia caregivers (e.g., relatives or unpaid nonrelatives) that generates tailored support recommendations. Care to Plan was developed using an iterative prototype and testing process with the assistance of a 29-member Community Advisory Board. A parallel-convergent mixed methods design (quan + QUAL) was used that included a post-CtP survey and a brief semistructured interview to capture in-depth information on the utility and feasibility of CtP. The sample included 30 caregivers of persons with dementia. The integrated qualitative and quantitative data indicated that CtP was simple and easy to understand, the streamlined visual layout facilitated utility, and the individualized recommendations could meet the needs of users. Key barriers to use included the need for additional features (e.g., video introductions of caregiver support types) to further guide dementia caregivers' potential use of tailored support. The multiple data sources underscore the high feasibility and utility of CtP. By describing, identifying, and prioritizing support, CtP could help to improve the care planning process for dementia caregivers. Future dissemination efforts should aim to demonstrate how CtP can be implemented seamlessly within current family caregiver support systems. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Stress and burden among caregivers of patients with Lewy body dementia.

PubMed

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

2011-02-01

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 problems are likely to affect caregivers' subjective burden. The present study used data from an Internet survey conducted by the Lewy Body Dementia Association. Respondents were 611 people who indicated that they were currently involved in the care of their relative with LBD. Subjective burden was assessed with a 12-item short version of the Zarit Burden Interview. A factor analysis revealed 3 dimensions of burden: role strain, personal strain, and worry about performance. Multiple regressions were used to examine predictors of these dimensions. BEPs, ADL disability, isolation, caregiver age, and patient gender were significant predictors of specific factors. Falls, formal service use, difficulty finding a physician, and evaluation of the physician had no significant associations with burden. These findings highlight burden experiences by caregivers of patients with LBD and the impact of BEPs, ADL assistance, and awareness about LBD on subjective burden.

Family caregiving to those with dementia in rural Alabama: racial similarities and differences.

PubMed

Kosberg, Jordan I; Kaufman, Allan V; Burgio, Louis D; Leeper, James D; Sun, Fei

2007-02-01

This study explored differences and similarities in the experiences of African American and White family caregivers of dementia patients living in rural Alabama. This cross-sectional survey used a caregiving stress model to investigate the interrelationships between caregiving burden, mediators, and outcomes. Random-digit-dialing telephone interviews were used to obtain data on a probability sample of 74 non-Hispanic White and 67 African American caregivers. White caregivers were more likely to be married and older, used acceptance and humor as coping styles, and had fewer financial problems. African American caregivers gave more hours of care, used religion and denial as coping styles, and were less burdened. The authors have developed a methodology for obtaining a representative sample of African American and White rural caregivers. Further investigations are needed of the interactions between urban/rural location and ethnic/racial backgrounds of dementia caregivers for heuristic and applied reasons.

The needs of people with dementia living at home from user, caregiver and professional perspectives: a cross-sectional survey.

PubMed

Miranda-Castillo, Claudia; Woods, Bob; Orrell, Martin

2013-02-04

Few reports have been published about differences in perspectives on perceived needs among community-residing people with dementia, their family caregivers, and professionals. The aim of this study was to compare these perspectives. During 2006 and 2007, one-hundred and fifty two interviews of people with dementia and their caregivers about the needs of the person with dementia were performed by four professionals using The Camberwell Assessment of Need for the Elderly (CANE). Professionals' views on met and unmet needs of people with dementia were obtained for the total sample, family caregivers' perspectives were gained for 125 people with dementia, and people with dementia's views on their own needs were obtained for 125 persons with dementia. People with dementia reported fewer needs compared with the reports of their caregivers and the professionals. The most frequent unmet needs reported by people with dementia, caregivers and professionals were in the areas of daytime activities, company, and psychological distress; however, people with dementia rated psychological distress as the commonest unmet need. Since the priorities of people with dementia can be different from those of caregivers and professionals, it is important to consider all perspectives when making care plans. Thus, compliance with treatment of people with dementia and also their quality of life could be potentially improved by a more collaborative partnership with them.

Social Representation of Dementia and Its Influence on the Search for Early Care by Family Member Caregivers.

PubMed

Juárez-Cedillo, Teresa; Jarillo-Soto, Edgar C; Rosas-Carrasco, Oscar

2014-06-01

Social representations (SRs) contain 3 dimensions: information, attitude, and field. These affect the recognition of the first symptoms of dementia by the patient's caregiver. This study focused on the period from the first signs of cognitive difficulties to the diagnosis of dementia. Eight caregivers of elderly patients with dementia were interviewed to construct their SRs regarding dementia and how this influences seeking medical treatment during the first stages of the disease. Social representations were analyzed through a structural focus, based on the content analysis. Decision making is related to knowledge about dementia, attitude (emotions and sensitivity), and the concept of the caregiver about the relative with dementia. The results confirm the importance of the symbolic dimension of personal experience in managing care and seeking medical treatment. The presence of dementia in the family creates interpersonal dilemmas that caregivers experience. The solutions are framed in the sociocultural context. © The Author(s) 2013.

Usages of Computers and Smartphones to Develop Dementia Care Education Program for Asian American Family Caregivers.

PubMed

Lee, Jung-Ah; Nguyen, Hannah; Park, Joan; Tran, Linh; Nguyen, Trang; Huynh, Yen

2017-10-01

Families of ethnic minority persons with dementia often seek help at later stages of the disease. Little is known about the effectiveness of various methods in supporting ethnic minority dementia patients' caregivers. The objective of the study was to identify smartphone and computer usage among family caregivers of dementia patients (i.e., Korean and Vietnamese Americans) to develop dementia-care education programs for them. Participants were asked various questions related to their computer or smartphone usage in conjunction with needs-assessment interviews. Flyers were distributed at two ethnic minority community centers in Southern California. Snowball recruitment was also utilized to reach out to the families of dementia patients dwelling in the community. Thirty-five family caregivers, including 20 Vietnamese and 15 Korean individuals, participated in this survey. Thirty participants (30 of 35, 85.7%) were computer users. Among those, 76.7% (23 of 30) reported daily usage and 53% (16 of 30) claimed to use social media. A majority of the participants (31 of 35, 88.6%) reported that they owned smartphones. More than half of smartphone users (18 of 29, 62%) claimed to use social media applications. Many participants claimed that they could not attend in-class education due to caregiving and/or transportation issues. Most family caregivers of dementia patients use smartphones more often than computers, and more than half of those caregivers communicate with others through social media apps. A smartphone-app-based caregiver intervention may serve as a more effective approach compared to the conventional in-class method. Multiple modalities for the development of caregiver interventions should be considered.

Caregiver burden of Mexican dementia patients: the role of dysexecutive syndrome, sleep disorders, schooling and caregiver depression.

PubMed

Rosas-Carrasco, Óscar; Guerra-Silla, María de Guadalupe; Torres-Arreola, Laura Del Pilar; García-Peña, Carmen; Escamilla-Jiménez, Cristopher Isaac; González-González, César

2014-01-01

As a result of the accelerated growth of the elderly population, reconfiguration of families and member roles, and the increase of mental disorders, it is necessary to investigate the effects of this set of factors on the caregivers of patients with dementia in Mexico. Mental disorders of individuals have a negative impact on their physical and emotional quality of life, leading to greater dependence and making the caring experience a heavy burden. Several studies (none in Mexico) have used either the characteristics of the patient or caregiver to determine the burden, but few studies have included both profiles within a single study. The objective of the present study was to analyze the characteristics of the patients and caregivers associated with caregiver burden. A multicenter study was carried out in six health institutions located in Mexico City, including 175 patients (and their caregivers) diagnosed with different types of dementia. We used the Spanish Caregiver Burden Screen. Descriptive analysis and logistic regressions were used to estimate the effect of the covariates on the caregiver burden. The results showed that patient variables have a greater impact on caregiver burden than caregiver-associated variables. Dysexecutive syndrome, sleep disorders, schooling and caregiver depression are associated with a higher level of caregiver burden. Caregiver burden is a complex phenomenon. The results of the present study showed the need to implement multifactorial interventions targeting the caregiver to reduce the burden, strengthen the skills for patient management to avoid depression, improve patient health, and diminish functional dependence and future hospitalization. © 2013 Japan Geriatrics Society.

Memory and communication support strategies in dementia: effect of a training program for informal caregivers.

PubMed

Liddle, Jacki; Smith-Conway, Erin R; Baker, Rosemary; Angwin, Anthony J; Gallois, Cindy; Copland, David A; Pachana, Nancy A; Humphreys, Michael S; Byrne, Gerard J; Chenery, Helen J

2012-12-01

People with dementia have a range of needs that are met by informal caregivers. A DVD-based training program was developed using research-based strategies for memory and communication in dementia. The effectiveness of the training on the caregiver experience and the well-being of the person with dementia was evaluated. A pre-test/post-test controlled trial was undertaken with caregiver-care-recipient dyads living in the community. Measures of the carers' knowledge of memory and communication strategies, burden, positive perceptions of caregiving, and perceptions of problem behaviors were taken pre- and three months post-intervention. The depression and well-being of the person with dementia were also evaluated. Satisfaction with the training and feedback were measured. Twenty-nine dyads (13 training group, 16 control group) participated. Bonferroni's correction was made to adjust for multiple comparisons, setting α at 0.00385. A significant improvement was found in caregivers' knowledge for the training group compared to the control group (p = 0.0011). The training group caregivers reported a reduction in the frequency of care recipient disruptive behaviors (p = 0.028) and increased perceptions of positive aspects of caregiving (p = 0.039), both at a level approaching significance. The training group care recipients had increased frequency of verbally communicated depressive behaviors at a level approaching significance (p = 0.0126). The frequency of observed depressive behaviors was not significantly different between groups. This approach to training for caregivers of people with dementia appears promising for its impact on knowledge and the caregiving experience. Further research could monitor the impact of the training on broader measures of depression and well-being, with a larger sample.

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…

Online support and education for dementia caregivers: overview, utilization, and initial program evaluation.

PubMed

Glueckauf, Robert L; Ketterson, Timothy U; Loomis, Jeffrey S; Dages, Pat

2004-01-01

Family caregivers of older adults with progressive dementia (e.g., Alzheimer's disease) are confronted with a variety of challenges in providing assistance to their loved ones, such as dealing with persistent, repetitive questions, managing episodes of agitation and aggressive responding, as well as monitoring hygiene and self-care activities. Although professional and governmental organizations have called for the creation of community-based education and support programs, a significant proportion of dementia caregivers in the United States continue to receive little or no formal instruction in responding effectively to these anxiety-provoking situations. This paper describes the development and implementation of Alzheimer's Caregiver Support Online (also known as AlzOnline), an Internet- and telephone-based education and support network for caregivers of individuals with progressive dementia. An outcome analysis of a Robert Wood Johnson Foundation-funded strategic marketing initiative to promote the use of AlzOnline is reviewed, followed by a presentation of the findings of an initial program evaluation. Finally, future directions for online caregiver evaluation research are proposed.

Empowering older people with early dementia and family caregivers: a participatory action research study.

PubMed

Nomura, Michie; Makimoto, Kiyoko; Kato, Motoko; Shiba, Tamami; Matsuura, Chieko; Shigenobu, Kazue; Ishikawa, Tomohisa; Matsumoto, Naomi; Ikeda, Manabu

2009-04-01

The increase in the number of people suffering from dementia is of increasing global concern. A survey on the living conditions of the elderly in a Japanese rural community revealed a high prevalence of early dementia and the necessity for interventions not only for the elderly with early dementia but also for their families. To describe the implementation and process evaluation of a programme based on cognitive rehabilitation aimed at empowering the elderly with early dementia and education and counselling programmes aimed at likewise empowering their family caregivers. This study used a community health action research model. Participatory action research (PAR) was conducted through a cycle of planning, action, and reflection to identify effective interventions to empower participants with dementia (PsWD) and their caregivers. A rural town in Japan. This project involved 37 community-dwelling elderly with early or mild dementia and 31 family caregivers. A focus group interview was used for assessment. A monthly activity-based programme based on cognitive rehabilitation was developed to improve cognitive function. Three types of data were collected: observational data collected during the activities, written comments from the caregivers, the record of phone interviews and counsellings with caregivers. These data were compiled in chronological order into a portfolio for analysis. To empower family caregivers, educational and counselling programmes were offered. The PAR lasted for 5 years and evolved over three cycles: individual, group and community. In the first cycle, the major focus of the intervention was to regain procedural skills for each PWD through a cooking programme. In the second cycle, to increase interactions with family members and with other PsWD, group activities that promoted communication among family members as well as among PsWD were implemented. The collective values and the beliefs of the PsWD's generation were validated by a series of trips

Positive psychology outcome measures for family caregivers of people living with dementia: a systematic review.

PubMed

Stansfeld, Jacki; Stoner, Charlotte R; Wenborn, Jennifer; Vernooij-Dassen, Myrra; Moniz-Cook, Esme; Orrell, Martin

2017-08-01

Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice. A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties. Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory. There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being.

Determinants of medication adherence in older people with dementia from the caregivers' perspective.

PubMed

El-Saifi, Najwan; Moyle, Wendy; Jones, Cindy; Alston-Knox, Clair

2018-05-11

ABSTRACTBackground:Adherence to treatment is a primary determinant of treatment success. Caregiver support can influence medication adherence in people with cognitive impairment. This study sought to characterize medication adherence in older people with dementia from the caregivers' perspective, and to identify influencing factors. Caregivers caring for a person with dementia and living in the community were eligible to complete the survey. Bayesian profile regression was applied to identify determinants of medication adherence measured using the Adherence to Refills and Medication Scale. Out of the 320 caregivers who participated in the survey, Bayesian profile regression on 221 participants identified two groups: Profile 1 (55 caregivers) with a mean adherence rate of 0.69 (80% Credible Interval (CrI): 0.61-0.77), and Profile 2 (166 caregivers) with a mean adherence rate of 0.80 (80% CrI: 0.77-0.84). Caregivers in Profile 1 were characterized with below data average scores for the following: cognitive functioning, commitment or intention, self-efficacy, and health knowledge, which were all above the data average in Profile 2, except for health knowledge. Caregivers in Profile 1 had a greater proportion of care recipients taking more than five medications and with late-stage dementia. Trade, technical, or vocational training was more common among the caregivers in Profile 1. Profile 2 caregivers had a better patient-provider relationship and less medical problems. Bayesian profile regression was useful in understanding caregiver factors that influence medication adherence. Tailored interventions to the determinants of medication adherence can guide the development of evidence-based interventions.

Healthcare use and cost in dementia caregivers: Longitudinal results from the Predictors Caregiver Study

PubMed Central

Zhu, Carolyn W.; Scarmeas, Nikolaos; Ornstein, Katherine; Albert, Marilyn; Brandt, Jason; Blacker, Deborah; Sano, Mary; Stern, Yaakov

2014-01-01

OBJECTIVE: To examine the effects of caregiver and patient characteristics on caregivers’ medical care use and cost. METHODS: 147 caregiver/patient dyads were followed annually for 6 years in 3 academic AD centers in the US. Logistic, negative binomial, and generalized linear mixed models were used to examine overall effects of caregiver/patient characteristics on caregivers’ hospitalizations, doctor visits, outpatient tests and procedures, and prescription and over-the-counter medications. RESULTS: Patients’ comorbid conditions and dependence were associated with increased healthcare use and costs of caregivers. Increases in caregiver depressive symptoms are associated with increases in multiple domains of caregivers’ healthcare use and costs. DISCUSSION: Findings suggest that we should expand our focus on dementia patients to include family caregivers to obtain a fuller picture of effects of caregiving. Primary care providers should integrate caregivers’ needs in healthcare planning and delivery. Clinical interventions that treat patients and caregivers as a whole will likely achieve the greatest beneficial effects. PMID:24637299

Predicting desire for institutional placement among racially diverse dementia family caregivers: the role of quality of care.

PubMed

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

2013-06-01

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. 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. 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. 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.

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

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…

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

ERIC Educational Resources Information Center

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

2005-01-01

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…

Quality of life in dementia: do professional caregivers focus on the significant domains?

PubMed

Gerritsen, Debby L; Ettema, Teake P; Boelens, Ellen; Bos, Joke; Hoogeveen, Frans; de Lange, Jacomine; Meihuizen, Lucinda; Schölzel-Dorenbos, Carla J M; Dröes, Rose-Marie

2007-01-01

The domains of quality of life that are considered important by people with dementia and professional caregivers are not in agreement. This explorative study addresses the question, "To what degree do professional caregivers, in their daily working routine, focus on the quality-of-life domains that people with dementia consider essential?" Study participants were nursing assistants who work in 24-hour nursing home care and professionals who offer daytime activities. Three hundred and seventy-four caregivers working on 29 units and 3 day care facilities of 13 nursing homes and in 12 meeting centers filled out a questionnaire. The caregivers reported to focus at least to some degree on most domains considered important by people with dementia. However, relatively little attention was paid to "financial situation" and "being useful/giving meaning to life." Professionals who offer daytime activities focused more than 24-hour care staff on "attachment," "enjoyment of activities," "sense of aesthetics," and "being useful/giving meaning to life."

Experimental Evaluation of the Effectiveness of Group Intervention for Dementia Caregivers.

ERIC Educational Resources Information Center

Haley, William E.; And Others

1987-01-01

Evaluated the effectiveness of group interventions for caregivers of elderly dementia patients. Indicated that, although caregivers rated the groups as quite helpful, group participation did not lead to improvements on objective measures of depression, life satisfaction, social support, or coping variables. (Author/ABB)

Caregiver burden and fatigue in caregivers of people with dementia: Measuring human herpesvirus (HHV)-6 and -7 DNA levels in saliva.

PubMed

Osaki, Tohmi; Morikawa, Takako; Kajita, Hiroyuki; Kobayashi, Nobuyuki; Kondo, Kazuhiro; Maeda, Kiyoshi

2016-01-01

We examined chronic fatigue, which has not been investigated in detail, in family caregivers for people with dementia. Forty-four community-dwelling family caregivers (the caregiver group: CG) and 50 elderly control participants (the non-caregiver group: NCG) participated in this study. We measured salivary human herpesvirus (HHV)-6 and -7 DNA levels and the Chalder fatigue scale (CFS) to assess levels of fatigue; we also measured the Center for Epidemiologic Studies-Depression Scale, Physical Activity Scale for the Elderly, Zarit Caregiver Burden Interview, Mini-Mental State Examination, Assessment of Motor and Process Skills, and Dementia Behavior Disturbance Scale. For CG, the salivary HHV-6 DNA levels and CFS scores were significantly higher than those in NCG. The salivary HHV-6 DNA levels in CG were significantly correlated with depressive symptoms, the cognitive function of the patients, and the activities of daily living/instrumental activities of daily living (ADL/IADL) abilities of the patients. The CFS scores in CG significantly correlated with caregiver burden, depression symptoms, leisure physical activity, the number of other family caregivers, and the hours spent for caregiving per week, as well as with behavior disturbances and ADL/IADL abilities. The salivary HHV-6 DNA levels may be added as a new biomarker for caregiver exhaustion. We concluded that fatigue assessments should be performed by not only a questionnaire, such as the CFS, but also by a biomarker search, such as HHV-6, when estimating the caregiver burden for family caregivers of people with dementia. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

The TECH@HOME study, a technological intervention to reduce caregiver burden for informal caregivers of people with dementia: study protocol for a randomized controlled trial.

PubMed

Malmgren Fänge, Agneta; Schmidt, Steven M; Nilsson, Maria H; Carlsson, Gunilla; Liwander, Anna; Dahlgren Bergström, Caroline; Olivetti, Paolo; Johansson, Per; Chiatti, Carlos

2017-02-09

It is estimated that global dementia rates will more than triple by 2050 and result in a staggering economic burden on families and societies. Dementia carries significant physical, psychological and social challenges for individuals and caregivers. Informal caregiving is common and increasing as more people with dementia are being cared for at home instead of in nursing homes. Caregiver burden is associated with lower perceived health, lower social coherence, and increased risk of morbidity and mortality. The aim of this trial is to evaluate the effects of information and communication technology (ICT) on caregiver burden among informal caregivers of people with dementia by reducing the need for supervision. This randomized controlled trial aims to recruit 320 dyads composed of people with dementia living in community settings and their primary informal caregivers. In the intervention group, people with dementia will have a home monitoring kit installed in their home while dyads in the control group will receive usual care. The ICT kit includes home-leaving sensors, smoke and water leak sensors, bed sensors, and automatic lights that monitor the individual's behavior. Alerts (text message and/or phone call) will be sent to the caregiver if anything unusual occurs. All study dyads will receive three home visits by project administrators who have received project-specific training in order to harmonize data collection. Home visits will take place at enrollment and 3 and 12 months following installation of the ICT kit. At every home visit, a standardized questionnaire will be administered to all dyads to assess their health, quality of life and resource utilization. The primary outcome of this trial is the amount of informal care support provided by primary informal caregivers to people with dementia. This is the first randomized controlled trial exploring the implementation of ICT for people with dementia in a large sample in Sweden and one of the first at the

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,…

Worksite-based internet multimedia program for family caregivers of persons with dementia.

PubMed

Beauchamp, Natasha; Irvine, A Blair; Seeley, John; Johnson, Brian

2005-12-01

Our goal was to evaluate the efficacy of a multimedia support program delivered over the Internet to employed family caregivers of persons with dementia. The evaluation of this program involved 299 employed family caregivers participating in a pretest-posttest randomized clinical trial with a 30-day follow-up and a waitlist control condition. Validated instruments include the Center for Epidemiologic Studies-Depression scale, the State-Trait Anxiety Inventory, the Caregiver Strain scale from Benjamin Rose, and Positive Aspects of Caregiving used in the nationwide REACH study. Those who viewed Caregiver's Friend: Dealing with Dementia 30 days postexposure demonstrated significant improvements in depression, anxiety, level and frequency of stress, caregiver strain, self-efficacy, and intention to seek help, as well as perceptions of positive aspects of caregiving. Interactive multimedia interventions delivered over the Internet appear to be uniquely suited to provide low-cost, effective, convenient, individually tailored programs that present educational information, cognitive and behavioral skills, and affective learning opportunities. This makes Web-based multimedia a promising avenue for work-life balance programs, employee-assistance providers, and organizations interested in improving family caregiver health and well-being.

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…

Resources for people with dementia

PubMed Central

Frank, Christopher; Feldman, Sid; Schulz, Mary

2011-01-01

Abstract Objective To summarize services provided by the Alzheimer Society and discuss other supports and resources available for the management of people with dementia. Sources of information Ovid MEDLINE was searched using the terms dementia, Alzheimer disease, community health services utilization, and caregiver stress. Main message Early diagnosis of dementia has been shown to be of benefit to patients and caregivers. Referral to the Alzheimer Society can help with nonpharmacologic management of dementia at the time of diagnosis and at any time during the course of the illness. Services include education about dementia, caregiver support, coordination of community services, and a variety of written resources for patients and caregivers. When available, the First Link program can assist with referral by minimizing the need for patients or caregivers to contact their local society branches. Other resources, including respite care and technological approaches to managing wandering, are discussed. Conclusion The Alzheimer Society is an important part of dementia management, and family physicians should always consider referral at the time of diagnosis, regardless of the severity of the condition. First Link, when it is available, can facilitate referral. Resources such as respite care and day programs should be considered when available. PMID:22170190

Systematic review of the effect of psychological interventions on family caregivers of people with dementia.

PubMed

Selwood, A; Johnston, K; Katona, C; Lyketsos, C; Livingston, G

2007-08-01

Caregivers of people with dementia are at high risk of psychological morbidity and associated breakdown in care. Many psychologically based interventions have been designed to help caregivers of people with dementia. More work is needed to identify which, if any, are helpful for such caregivers. We conducted a systematic review of the immediate and long term efficacy of different types of psychological interventions for the psychological health of caregivers of people with dementia, using standardized criteria, to assist clinicians in implementing rational, evidence-based management recommendations. We reviewed studies examining the effects of any therapy derived from a psychological approach that satisfied pre-specified criteria. Using the Oxford Centre for Evidence-Based Medicine criteria we rated the quality of each study, extracted data and gave overall ratings to different types of intervention. We identified 244 references in our search of which 62 met our inclusion criteria. Our findings are limited by lack of good quality evidence, with only ten level 1 studies identified. We found excellent evidence for the efficacy of six or more sessions of individual behavioral management therapy centered on the care recipient's behavior in alleviating caregiver symptoms both immediately and for up to 32 months. Teaching caregivers coping strategies either individually or in a group also appeared effective in improving caregiver psychological health both immediately and for some months afterwards. Group interventions were less effective than individual interventions. Education about dementia by itself, group behavioral therapy and supportive therapy were not effective caregiver interventions.

The Challenges of Developing a Participatory Arts Intervention for Caregivers of Persons with Dementia

PubMed Central

Gammonley, Denise; Hanna Powell, Gay; Wan, Thomas T

2017-01-01

Objective: We describe the development and challenges in implementing a web-based participatory art intervention specifically designed for caregivers of persons with dementia to use at home with their loved one.   Method: An interprofessional team, including an experienced national panel of artists, developed a participatory arts toolkit consisting of seven web-based modules involving a combination of music, singing, dancing, poetry, and painting. Participants completed a survey of demographics, caregiver needs, and caregiver burden.  Results: Thirty caregivers with high caregiver needs and a high caregiver burden volunteered to pilot the intervention. Difficulties with caregiver recruitment and compliance with lesson plans were noted. Caregivers provided positive and negative qualitative feedback.   Discussion: The challenges and possible solutions to the problems identified in the implementation and assessment of this participatory arts intervention will provide important insights for future studies linking the arts and dementia care.    PMID:28503390

The Challenges of Developing a Participatory Arts Intervention for Caregivers of Persons with Dementia.

PubMed

Golden, Adam; Gammonley, Denise; Hanna Powell, Gay; Wan, Thomas T

2017-04-11

We describe the development and challenges in implementing a web-based participatory art intervention specifically designed for caregivers of persons with dementia to use at home with their loved one.   Method: An interprofessional team, including an experienced national panel of artists, developed a participatory arts toolkit consisting of seven web-based modules involving a combination of music, singing, dancing, poetry, and painting. Participants completed a survey of demographics, caregiver needs, and caregiver burden.  Results: Thirty caregivers with high caregiver needs and a high caregiver burden volunteered to pilot the intervention. Difficulties with caregiver recruitment and compliance with lesson plans were noted. Caregivers provided positive and negative qualitative feedback.   Discussion: The challenges and possible solutions to the problems identified in the implementation and assessment of this participatory arts intervention will provide important insights for future studies linking the arts and dementia care.

Pilot testing of the "First You Should Get Stronger" program among caregivers of older adults with dementia.

PubMed

Lök, Neslihan; Bademli, Kerime

In this study, randomized controlled interventional study pattern was used to examine the effects of the "First You Should Get Stronger" program on the caregiving burden and healthy life style behavior of caregivers of dementia patients. "Zarit Caregiver Burden Scale" and "Healthy Life Style Behavior Scale" were used. The study was completed with 40 caregivers in total with 20 in the intervention group and 20 in the control group. A statistically significant difference was determined between the "Zarit Caregiving Burden Scale" and "Healthy Life Style Behavior Scale" score averages of the intervention group that participated in the "First You Should Get Stronger" program in comparison with those of the control group. It is important for the healths of caregivers to include similar programs for the caregivers of dementia patients in continuous and regular applications. The results highlight the importance of the "First You Should Get Stronger" program significantly decreased the caregiving burden and significantly developed the healthy lifestyle behaviors of caregivers in the intervention group. Since dementia is a difficult neurological syndrome with patients cared at home, it generally wears out the caregivers significantly. It is suggested that the nurses and healthcare professionals working with dementia patients are evaluated separately and that they carry out caregiving applications within the scope of the "First You Should Get Stronger" program. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

The effectiveness of dyadic interventions for people with dementia and their caregivers.

PubMed

Moon, Heehyul; Adams, Kathryn Betts

2013-11-01

The need for dyadic intervention is enhanced with increasing numbers of older adults with early-stage dementia. The purpose of this paper is to review the effects of dyadic interventions on caregivers (CGs) and care recipients (CRs) at the early stage of dementia. Four databases, AgeLine, Medline, EBSCO, and PyscINFO were searched and relevant literature from 2000 onwards was reviewed. The twelve studies identified used a variety of intervention approaches including support group, counseling, cognitive stimulation, skill training, and notebook-keeping. This review suggests that intervention programs for early-stage dementia caregiving dyads were feasible and well accepted by participants. The reviewed studies provided rich evidence of the significance of mutual understanding and communication to partners' well-being and relationship quality within the caregiving process. The findings suggest that these intervention approaches improved cognitive function of the CRs, social relations, and the relationship between the primary CG and the CR, although evidence of long-term effectiveness is lacking.

A Chronic Grief Intervention for Dementia Family Caregivers in Long-Term Care

PubMed Central

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

2017-01-01

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

Stigma, Expressed Emotion, and Quality of Life in Caregivers of Individuals with Dementia.

PubMed

Weisman de Mamani, Amy; Weintraub, Marc J; Maura, Jessica; Martinez de Andino, Ana; Brown, Caitlin A

2017-10-15

Expressed emotion (EE) is a measure of a caregiver's critical and emotionally overinvolved (EOI; e.g., intrusive, self-sacrificing) attitudes and behaviors toward a person with a mental illness. Mounting evidence indicates that high levels of these critical and EOI attitudes and behaviors (collectively termed high EE) in family members are associated with a poorer course of illness for people with a range of disorders, including dementia (Nomura et al., 2005). However, less is known about factors that might trigger high EE and how high EE might impact dementia caregivers' own mental health. In this study we propose that caregivers who perceive stigma from their relative's illness may be more likely to be critical or intrusive (high EOI) toward their relative in an attempt to control symptomatic behaviors. We further hypothesized that high EE would partially mediate the link between stigma and quality of life (QoL) as there is some evidence that high EE is associated with poorer mental health in caregivers themselves (Safavi et al., 2015). In line with study hypotheses and using a sample of 106 dementia caregivers, we found that greater caregiver stigma was associated with both high EE (for criticism and EOI) and with poorer QoL. Mediational analyses further confirmed that high EE accounts for much of the association between stigma and poorer QoL. Study results suggest that addressing caregiver stigma in therapy could reduce levels of high EE and indirectly therefore improve caregiver QoL. Intervening directly to reduce high EE could also improve caregiver QoL. © 2017 Family Process Institute.

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)…

The needs of people with dementia living at home from user, caregiver and professional perspectives: a cross-sectional survey

PubMed Central

2013-01-01

Background Few reports have been published about differences in perspectives on perceived needs among community-residing people with dementia, their family caregivers, and professionals. The aim of this study was to compare these perspectives. Method During 2006 and 2007, one-hundred and fifty two interviews of people with dementia and their caregivers about the needs of the person with dementia were performed by four professionals using The Camberwell Assessment of Need for the Elderly (CANE). Professionals’ views on met and unmet needs of people with dementia were obtained for the total sample, family caregivers’ perspectives were gained for 125 people with dementia, and people with dementia’s views on their own needs were obtained for 125 persons with dementia. Results People with dementia reported fewer needs compared with the reports of their caregivers and the professionals. The most frequent unmet needs reported by people with dementia, caregivers and professionals were in the areas of daytime activities, company, and psychological distress; however, people with dementia rated psychological distress as the commonest unmet need. Conclusions Since the priorities of people with dementia can be different from those of caregivers and professionals, it is important to consider all perspectives when making care plans. Thus, compliance with treatment of people with dementia and also their quality of life could be potentially improved by a more collaborative partnership with them. PMID:23379786

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

PubMed

Boltz, Marie; Chippendale, Tracy; Resnick, Barbara; Galvin, James E

2015-01-01

Baseline health and functional vulnerabilities increase the risk for complications in persons with dementia and predispose family caregivers (FCGs) to increased stress. This secondary analysis used a combined quantitative and qualitative approach. Regression analyses examined the contribution of patient and FCG characteristics to FCG anxiety. Interviews with FCGs explored the experiences and responses of FCGs during hospitalization of their family member with dementia. 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 FCGs. 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 multifactorial 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.

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

Family caregiver satisfaction with the nursing home after placement of a relative with dementia.

PubMed

Tornatore, Jane B; Grant, Leslie A

2004-03-01

This article examines family caregiver satisfaction after nursing home placement of a relative with Alzheimer disease or a related dementia. Determining what contributes to family caregiver satisfaction is a critical step toward implementing effective quality improvement strategies. A stress process model is used to study caregiver satisfaction among 285 family caregivers in relation to primary objective stressors (stage of dementia, length of stay, length of time in caregiving role, visitation frequency, involvement in nursing home, and involvement in hands-on care), subjective stressors (expectations for care), caregiver characteristics (education, marital status, familial relationship, workforce participation, distance from nursing home, and age), and organizational resources (rural/urban location, profit/nonprofit ownership, special care unit [SCU] designation, and custodial unit designation). SAS PROC MIXED is used in a multilevel analysis. Higher satisfaction is associated with earlier stage of dementia, greater length of time involved in caregiving prior to institutionalization, higher visitation frequency, less involvement in hands-on care, greater expectations for care, and less workforce participation. Multilevel analysis showed that primary stressors are the strongest predictors of satisfaction. Only one caregiver characteristic (work participation) and one organizational resource (rural/urban location) predict satisfaction. SCU designation was unrelated to satisfaction, perhaps because SCUs have less to offer residents in more advanced as opposed to earlier stages of Alzheimer disease. If family satisfaction is to be achieved, family presence in a nursing home needs to give caregivers a sense of positive involvement and influence over the care of their relative.

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

Resilience of caregivers of people with dementia: a systematic review of biological and psychosocial determinants.

PubMed

Dias, Rachel; Santos, Raquel Luiza; Sousa, Maria Fernanda Barroso de; Nogueira, Marcela Moreira Lima; Torres, Bianca; Belfort, Tatiana; Dourado, Marcia Cristina Nascimento

2015-01-01

Although caregivers of people with dementia may face difficulties, some positive feelings of caregiving may be associated with resilience. This study systematically reviewed the definitions, methodological approaches and determinant models associated with resilience among caregivers of people with dementia. Search for articles published between 2003 and 2014 in ISI, PubMed/MEDLINE, SciELO and Lilacs using the search terms resilience, caregivers and dementia. Resilience has been defined as positive adaptation to face adversity, flexibility, psychological well-being, strength, healthy life, burden, social network and satisfaction with social support. No consensus was found about the definition of resilience associated with dementia. We classified the determinant variables into biological, psychological and social models. Higher levels of resilience were associated with lower depression rates and greater physical health. Other biological factors associated with higher levels of resilience were older age, African-American ethnicity and female sex. Lower burden, stress, neuroticism and perceived control were the main psychological factors associated with resilience. Social support was a moderating factor of resilience, and different types of support seemed to relieve the physical and mental overload caused by stress.

A review of conceptualisation of expressed emotion in caregivers of older adults with dementia.

PubMed

Li, Chao-Yin; Murray, MaryAnne

2015-02-01

To clarify the concept of 'expressed emotion' and its application to caregivers of older adults with dementia. Expressed emotion has been a useful construct for understanding the quality of family relationships affecting patients with mental illness and their caregivers. However, this concept has been developed without precisely defining 'expressed emotion' as it pertains to dementia patients. Clarity regarding expressed emotion will enable nurses to apply knowledge of expressed emotion and provide important information for the development of new clinical interventions for this specific population. Integrative review. A review of literature on expressed emotion by caregivers of older adults with dementia. The inclusion criteria were: (1) published in English or Chinese during 1970-2012; (2) included both research and theoretical review articles on expressed emotion in nursing and other disciplines such as psychology, psychiatry and sociology. Initially, 236 articles were screened, and finally, 32 articles were evaluated for this review. Emotional expression and expressed emotion were discussed to clarify the distinctions and address overlap between these two similar terms. In addition, expressed emotion was examined further from three different aspects: trait or state, social control and cross-cultural. Finally, the results of reviewed papers for expressed emotion on dementia patients were explored and synthesised. A conceptual definition and a theoretical framework for the concept of expressed emotion are urgently needed to further our understanding of this critical phenomenon. With increasing attention to caregiving for patients with dementia, including the concept of expressed emotion in the research of this field may accelerate understanding of the importance of the family dynamics in advanced ageing caregiving. The expressed emotion concept could guide much of current clinical practice and help professional nurses understand the family's experience and

African American Dementia Caregiver Problem Inventory: Descriptive analysis and initial psychometric evaluation.

PubMed

Wells, Brittny A; Glueckauf, Robert L; Bernabe, Daniel; Kazmer, Michelle M; Schettini, Gabriel; Springer, Jane; Sharma, Dinesh; Meng, Hongdao; Willis, Floyd B; Graff-Radford, Neill

2017-02-01

The primary objectives of the present study were: (a) to develop the African American Dementia Caregiver Problem Inventory (DCPI-A) that assesses the types and frequency of problems reported by African American dementia caregivers seeking cognitive-behavioral intervention, (b) to evaluate the intercoder reliability of the DCPI-A, and (c) to measure the perceived severity of common problems reported by this caregiver population. The development of the DCPI-A was divided into 3 major steps: (a) creating an initial sample pool of caregiver problems derived from 2 parent randomized clinical trials, (b) formulating a preliminary version of the DCPI-A, and (c) finalizing the development of the DCPI-A that includes 20 problem categories with explicit coding rules, definitions, and illustrative examples. The most commonly reported caregiver problems fell into 5 major categories: (a) communication problems with care recipients, family members, and/or significant others, (b) problems with socialization, recreation, and personal enhancement time; (c) problems with physical health and health maintenance, (d) problems in managing care recipients' activities of daily living; and (e) problems with care recipients' difficult behaviors. Intercoder reliability was moderately high for both percent agreement and Cronbach's kappa. A similar positive pattern of results was obtained for the analysis of coder drift. The descriptive analysis of the types and frequency of problems of African American dementia caregivers coupled with the outcomes of the psychometric evaluation bode well for the adoption of the DCPI-A in clinical settings. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Managing Your Loved One's Health: Development of a New Care Management Measure for Dementia Family Caregivers.

PubMed

Sadak, Tatiana; Wright, Jacob; Borson, Soo

2018-05-01

The National Alzheimer's Plan calls for improving health care for people living with dementia and supporting their caregivers as capable health care partners. Clinically useful measurement tools are needed to monitor caregivers' knowledge and skills for managing patients' often complex health care needs as well as their own self-care. We created and validated a comprehensive, caregiver-centered measure, Managing Your Loved One's Health (MYLOH), based on a core set of health care management domains endorsed by both providers and caregivers. In this article, we describe its development and preliminary cultural tailoring. MYLOH is a questionnaire containing 29 items, grouped into six domains, which requires <20 min to complete. MYLOH can be used to guide conversations between clinicians and caregivers around health care management of people with dementia, as the basis for targeted health care coaching, and as an outcome measure in comprehensive dementia care management interventions.

[The Role of Resilience Factors in Informal Caregivers of Dementia Patients - A Review on Selected Factors].

PubMed

Kunzler, Angela; Skoluda, Nadine; Nater, Urs

2018-01-01

In the face of demographic change, the informal care of dementia patients is becoming increasingly important. However, due to dementia symptoms as well as persisting care demands, this subgroup of informal caregivers is confronted with a large number of stressors resulting in chronic stress and impaired physical and mental health in many caregivers. Based on the current research on resilience (i. e., maintaining or regaining health despite stress and adversities), there is increasing interest in identifying resilience factors that may serve as resources to cope with informal care and protect caregivers against health problems. The review discusses the role of resilience factors in the association between ongoing caregiving stress and health. In analyzing the current state of research on resilience factors for dementia caregivers, we focus on the factors self-efficacy, relationship quality, and social support. © Georg Thieme Verlag KG Stuttgart · New York.

Connecting health-related quality of life and mental health in dementia caregivers from Colombia, South America.

PubMed

Perrin, Paul B; Morgan, Matthew; Aretouli, Eleni; Sutter, Megan; Snipes, Daniel J; Hoyos, Guillermo Ramirez; Buraye, Jacqueline Arabia; Arango-Lasprilla, Juan Carlos

2014-01-01

Research in Caucasian populations has begun to examine the broad associations between physical and mental health in dementia caregivers. However, the examination of this relationship in Latin America is largely absent from the literature despite the fact that the region will see a major increase in dementia cases over the next 20 years. The current study examined the associations between health-related quality of life (HRQOL) and mental health in 90 dementia caregivers from Colombia, South America. A canonical correlation found that higher caregiver HRQOL was related to better mental health, as expected. Caregivers with high vitality and low role limitations due to physical problems tended to have low depression and high satisfaction with life. Follow-up multiple regressions found that caregiver role limitations due to physical problems was uniquely associated with satisfaction with life, whereas vitality, role limitations due to physical problems, and pain were uniquely associated with burden (although the pain effect was likely error due to a suppressor effect). Additionally, vitality and social functioning were uniquely negatively related to depression. Because of the extremely high overlap between these two sets of variables, dementia interventions are needed in Latin America that target both caregiver mental and physical health, as both likely operate in unison and influence each other.

Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial.

PubMed

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

2015-01-01

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. 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. 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). 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 affordable. The findings are even more promising

Dyadic relational resources and role strain in family caregivers of persons living with dementia at home: A cross-sectional survey.

PubMed

Yang, Ching-Tzu; Liu, Hsin-Yun; Shyu, Yea-Ing Lotus

2014-04-01

Family caregivers of older persons with dementia face negative impacts such as heightened role strain due to care receivers' incremental loss of cognitive function. Dyadic relational resources were found to protect caregivers against negative caregiving outcomes while caring for cancer patients, but had not been explored in caregivers of patients with dementia. To explore whether the impact of caregiving demand/care receivers' cognitive functioning on caregiver role strain is moderated by dyadic relational resources. Cross-sectional correlational survey. The neurological clinics of a 3700-bed medical centre, neurological ward, and day care centre affiliated with a regional hospital in northern Taiwan. A convenience sample of 219 family caregivers and care receivers with dementia was enrolled, with 197 (90%) completing the study questionnaires. Data were collected from family caregivers' self-completed questionnaires from December 2010 to November 2011. We examined the moderating effects of caregiving demand/care receiver dementia severity and dyadic relational resources (mutuality, preparedness and predictability) on caregiving outcome (role strain) using hierarchical multiple regression analyses. Moderating effects were examined according to two- and three-way interaction terms in the regressions. We also explored the simple effect of each independent variable on role strain. The dyadic relational resources of mutuality and preparedness moderated the effects of caregiving demand on caregivers' role strain. That is, a high level of mutuality and preparedness protected caregivers from high levels of role strain, even when caregiving demand was high. Another important factor was a high level of predictability, which tended to decrease role strain. Finally, the association between care receiver cognitive functioning and caregiver role strain was influenced by the level of mutuality between caregiver and care receiver. More specifically, high levels of mutuality

Impact of the REACH II and REACH VA Dementia Caregiver Interventions on Healthcare Costs.

PubMed

Nichols, Linda O; Martindale-Adams, Jennifer; Zhu, Carolyn W; Kaplan, Erin K; Zuber, Jeffrey K; Waters, Teresa M

2017-05-01

Examine caregiver and care recipient healthcare costs associated with caregivers' participation in Resources for Enhancing Alzheimer's Caregivers Health (REACH II or REACH VA) behavioral interventions to improve coping skills and care recipient management. RCT (REACH II); propensity-score matched, retrospective cohort study (REACH VA). Five community sites (REACH II); 24 VA facilities (REACH VA). Care recipients with Alzheimer's disease and related dementias (ADRD) and their caregivers who participated in REACH II study (analysis sample of 110 caregivers and 197 care recipients); care recipients whose caregivers participated in REACH VA and a propensity matched control group (analysis sample of 491). Previously collected data plus Medicare expenditures (REACH II) and VA costs plus Medicare expenditures (REACH VA). There was no increase in VA or Medicare expenditures for care recipients or their caregivers who participated in either REACH intervention. For VA care recipients, REACH was associated with significantly lower total VA costs of care (33.6%). VA caregiver cost data was not available. In previous research, both REACH II and REACH VA have been shown to provide benefit for dementia caregivers at a cost of less than $5/day; however, concerns about additional healthcare costs may have hindered REACH's widespread adoption. Neither REACH intervention was associated with additional healthcare costs for caregivers or patients; in fact, for VA patients, there were significantly lower healthcare costs. The VA costs savings may be related to the addition of a structured format for addressing the caregiver's role in managing complex ADRD care to an existing, integrated care system. These findings suggest that behavioral interventions are a viable mechanism to support burdened dementia caregivers without additional healthcare costs. © 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society.

In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers' education needs, barriers, and preferences.

PubMed

Peterson, Kendra; Hahn, Howard; Lee, Amber J; Madison, Catherine A; Atri, Alireza

2016-09-23

Most patients with dementia or cognitive impairment receive care from family members, often untrained for this challenging role. Caregivers may not access publicly available caregiving information, and caregiver education programs are not widely implemented clinically. Prior large surveys yielded broad quantitative understanding of caregiver information needs, but do not illuminate the in-depth, rich, and nuanced caregiver perspectives that can be gleaned using qualitative methodology. We aimed to understand perspectives about information sources, barriers and preferences, through semi-structured interviews with 27 caregivers. Content analysis identified important themes. We interviewed 19 women, 8 men; mean age 58.5 years; most adult children (15) or spouses (8) of the care recipient. Dementia symptoms often developed insidiously, with delayed disease acknowledgement and caregiver self-identification. While memory loss was common, behavioral symptoms were most troublesome, often initially unrecognized as disease indicators. Emerging themes: 1.) Barriers to seeking information often result from knowledge gaps, rather than reluctance to assume the caregiver role; 2.) Most caregivers currently receive insufficient information. Caregivers are open to many information sources, settings, and technologies, including referrals to other healthcare professionals, print material, and community and internet resources, but expect the primary care provider (PCP) to recommend, endorse, and guide them to specific sources. These findings replicated and expanded on results from previous quantitative surveys and, importantly, revealed a previously unrecognized essential factor: despite receiving insufficient information, caregivers place critical value on their relationship with care recipient PCPs to receive recommendations, guidance and endorsement to sources of caregiving information. Implications include: 1.) Greater public education is needed to help caregivers identify and

Finding Meaning in Written Emotional Expression by Family Caregivers of Persons With Dementia.

PubMed

Butcher, Howard K; Gordon, Jean K; Ko, Ji Woon; Perkhounkova, Yelena; Cho, Jun Young; Rinner, Andrew; Lutgendorf, Susan

2016-12-01

This study tested the effect of written emotional expression on the ability to find meaning in caregiving and the effects of finding meaning on emotional state and psychological burden in 91 dementia family caregivers. In a pretest-posttest design, participants were randomly assigned to either an experimental or a comparison group. Experimental caregivers (n = 57) wrote about their deepest thoughts and feelings about caring for a family member with dementia, whereas those in the comparison group (n = 34) wrote about nonemotional topics. Results showed enhanced meaning-making abilities in experimental participants relative to comparison participants, particularly for those who used more positive emotion words. Improved meaning-making ability was in turn associated with psychological benefits at posttest, but experimental participants did not show significantly more benefit than comparison participants. We explore the mediating roles of the meaning-making process as well as some of the background characteristics of the individual caregivers and their caregiving environments. © The Author(s) 2016.

The influence of day care centres designed for people with dementia on family caregivers - a qualitative study.

PubMed

Tretteteig, Signe; Vatne, Solfrid; Rokstad, Anne Marie Mork

2017-01-05

Dementia is one of the most challenging age-related illnesses for family caregivers, whose care-related burden is well known. Research indicates that day care centres (DCCs) can reduce the caregiver burden and help family caregivers to cope with demands; however, the current body of knowledge is still tentative and inconsistent, and more research is recommended. The aim of this study is to provide an extended understanding of the situation of family caregivers and to examine to what extent DCCs can meet their need for support and respite. This study has a qualitative descriptive design using in-depth interviews with 17 family caregivers of people with dementia attending DCCs. The data analysis was undertaken using systematic text condensation. Caregivers experience a complex role, with added responsibilities, new tasks, and emotional and relational challenges that are expressed through distressing emotions and demands for interaction. Additionally, the caregiving role leads to positive experiences, such as acceptance and adaptation, support and help, and positive changes in the relationship. Day care relieves family caregivers by meeting the person with dementia's needs for social community, nutrition, physical activity, and structure and variety in everyday life. Using a DCC led to a higher quality of time spent together and easier cooperation, but it also produced some hard feelings and challenging situations. DCCs gave the caregivers a feeling of freedom and increased the time available to be spent on their own needs, to be social and to work or do practical tasks undisturbed. DCCs for people with dementia can give family caregivers support and relief and have a positive impact on the relationship between the family caregiver and the person with dementia. A more individualized program, in addition to flexible opening hours, would make DCCs even more effective as a respite service, positively influencing the family caregiver's motivation and ability to care and

Cognitive reserve and self-efficacy as moderators of the relationship between stress exposure and executive functioning among spousal dementia caregivers.

PubMed

Pertl, M M; Hannigan, C; Brennan, S; Robertson, I H; Lawlor, B A

2017-04-01

A substantial literature has reported that stress negatively impacts on cognitive processes. As dementia caregiving can be stressful, it has been hypothesized that the challenges of dementia care may increase caregivers' own vulnerability to cognitive decline. Prefrontal processes are thought to be most vulnerable to stress; however, few studies have examined whether greater caregiver stress predicts poorer executive dysfunction, and no previous research has considered potential moderators of this relationship. We examined (1) whether greater psychological stress mediated a relationship between caregiver stress exposure and executive functioning and (2) whether greater self-efficacy and cognitive reserve (CR) moderated this relationship. Spousal dementia caregivers (n = 253) completed the Neuropsychiatric Inventory Questionnaire (stress exposure), the Perceived Stress Scale, the National Adult Reading Test (CR), the Fortinsky dementia-specific caregiver self-efficacy scale, and the Color Trails Test (executive functioning). Moderated mediation was tested using the PROCESS macro. Age, gender, and dementia risk factors were included as covariates. Greater stress exposure indirectly predicted executive functioning through psychological stress. Stronger relationships between greater psychological stress and poorer executive functioning were observed among caregivers with lower CR; there was no evidence that self-efficacy moderated the relationship between stress exposure and psychological stress. Our findings are in line with the idea that greater psychological stress in response to challenges associated with dementia care predicts poorer caregiver executive functioning, particularly among caregivers with low CR. However, these findings are cross sectional; it is also possible that poorer executive functioning contributes to greater caregiver stress.

Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: a randomized pilot study.

PubMed

Gitlin, Laura N; Winter, Laraine; Burke, Janice; Chernett, Nancy; Dennis, Marie P; Hauck, Walter W

2008-03-01

To test whether the Tailored Activity Program (TAP) reduces dementia-related neuropsychiatric behaviors, promotes activity engagement, and enhances caregiver well-being. Prospective, two-group (treatment, wait-list control), randomized, controlled pilot study with 4 months as main trial endpoint. At 4 months, controls received the TAP intervention and were reassessed 4 months later. Patients' homes. Sixty dementia patients and family caregivers. The eight-session occupational therapy intervention involved neuropsychological and functional testing, selection, and customization of activities to match capabilities identified in testing, and instruction to caregivers in use of activities. Behavioral occurrences, activity engagement, and quality of life in dementia patients; objective and subjective burden and skill enhancement in caregivers. At 4 months, compared with controls, intervention caregivers reported reduced frequency of problem behaviors, and specifically for shadowing and repetitive questioning, and greater activity engagement including the ability to keep busy. Fewer intervention caregivers reported agitation or argumentation. Caregiver benefits included fewer hours doing things and being on duty, greater mastery, self-efficacy, and skill enhancement. Wait-list control participants following intervention showed similar benefits for reductions in behavioral frequency and caregiver hours doing things for the patient and mastery. Caregivers with depressed symptoms derived treatment benefits similar to nondepressed caregivers. Tailoring activities to the capabilities of dementia patients and training families in activity use resulted in clinically relevant benefits for patients and caregivers. Treatment minimized trigger behaviors for nursing home placement and reduced objective caregiver burden. Noteworthy is that depressed caregivers effectively engaged in and benefited from the intervention.

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…

Advance Directives as Support of Autonomy for Persons with Dementia? A Pilot Study among Persons with Dementia and Their Informal Caregivers.

PubMed

Schmidhuber, Martina; Haeupler, Sandra; Marinova-Schmidt, Velislava; Frewer, Andreas; Kolominsky-Rabas, Peter L

2017-01-01

Advance directives could be an important instrument to support a person's will once he/she is not able to consent anymore - if composed competently. A survey was conducted to identify the level of knowledge concerning possibilities and limits of advance directives. The study was conducted as part of the Bavarian Dementia Survey (BayDem). Data were collected from January 2014 to December 2015 by structured face-to-face interviews. Study participants were persons with dementia and their informal caregivers ( n = 74). In total, 66% reported having written an advance directive. Concerning the participants' knowledge about possibilities and limitations of advance directives, a lack of knowledge was noted about the possibility to revoke an advance directive. Furthermore, 70% of informal caregivers and 56% of persons with dementia were not aware of the possibility to include dementia-specific terms in the advance directive. It is necessary to optimize structures for public information and education concerning the topic of advance directives for persons with dementia.

The relationship of specific items on the Neuropsychiatric Inventory to caregiver burden in dementia: a systematic review.

PubMed

Terum, Toril Marie; Andersen, John Roger; Rongve, Arvid; Aarsland, Dag; Svendsboe, Ellen J; Testad, Ingelin

2017-07-01

Neuropsychiatric symptoms (NPSs) are common in dementia, and they have been identified as important care-recipient variables in terms of their impact on caregiver burden. The aim of this review was to describe how individual NPSs in dementia, assessed using the Neuropsychiatric Inventory, are associated with caregiver burden. We performed a systematic review of English language, peer-reviewed articles retrieved from MEDLINE, PSYCINFO, and EMBASE. A total of 13 studies met the inclusion criteria. Four studies examined the association between individual NPSs and caregiver burden using the Spearman rank correlation test, while three used Pearson's correlation test. Of the remaining studies, five used multiple regression analyses and one the chi-squared test. The majority of included studies did not differentiate between dementia subtypes in the analysis or mainly included only caregivers of people with Alzheimer's disease. The Clinical Dementia Rating score and mean Mini-Mental State Examination score indicate mild to moderate dementia. The majority of caregivers were women, most of whom were children (53.8%) or spouses (36%). The data indicated that irritability, followed by agitation, sleep disturbances, anxiety, apathy, and delusion seem to impact caregiver burden the most. Our principal finding is that irritability, agitation, sleep disturbances, anxiety, apathy, and delusion seem to exert the most impact on caregiver burden. Heterogeneity in the measures and statistical analyses used, however, makes it difficult to make conclusive interpretations. Future research in this field would benefit from standardization of the scientific methodology in use. Copyright © 2017 John Wiley & Sons, Ltd. Copyright © 2017 John Wiley & Sons, Ltd.

Development and Implementation of Tele-Savvy for Dementia Caregivers: A Department of Veterans Affairs Clinical Demonstration Project.

PubMed

Griffiths, Patricia C; Whitney, M Kate; Kovaleva, Mariya; Hepburn, Kenneth

2016-02-01

To test fidelity and preliminary efficacy of Tele-Savvy, an internet-based version of the in-person, evidence-based psychoeducation Savvy Caregiver Program (SCP) for dementia caregivers. Tele-Savvy used synchronous (tele-conferences) and asynchronous components (video modules) to provide program access to caregivers in their homes. SCP experts were surveyed to evaluate Tele-Savvy's fidelity to SCP. A convenience sample of 30 dementia caregivers from the Atlanta VA Medical Center enrolled in the Tele-Savvy clinical demonstration program. Twenty-two caregivers completed both pre- and postprogram evaluations, which included measures of caregiver stress and competence and behavioral and psychological symptoms of dementia (BPSD). Expert review confirmed Tele-Savvy's fidelity with and, in certain domains, improvement on the original. Participants demonstrated moderately high initial levels of burden, anxiety, and depressive symptoms all of which decreased significantly postprogram in an intention to treat analysis. Similar reductions were seen in care recipients' BPSD and caregivers' reactions to them. Marginally significant increases in caregiver competence were observed. Caregiver and expert panel evaluations of program quality were enthusiastic. An effective online caregiver psychoeducation program could provide greatly expanded access for caregivers who cannot attend in person for reasons of distance, transportation limitations, and caregiving responsibilities. Further testing in a controlled trial is needed to establish program efficacy. Published by Oxford University Press on behalf of the Gerontological Society of America 2015.

Trajectories of health-related quality of life among family caregivers of individuals with dementia: A home-based caregiver-training program matters.

PubMed

Kuo, Li-Min; Huang, Huei-Ling; Liang, Jersey; Kwok, Yam-Ting; Hsu, Wen-Chuin; Liu, Chin-Yi; Shyu, Yea-Ing L

To determine distinct courses of change in health-related quality of life (HRQoL) among family caregivers of individuals with dementia and how participating in a home-based caregiver-training program affects the probability of belonging to each course. Sixty three caregivers were in the intervention group, and 66 caregivers were in the control group of a single-blinded randomized clinical trial. Two distinct trajectories of HRQoL were identified: a well-functioning trajectory and a poor-functioning trajectory. Caregivers who received the training program were more likely than those who did not have a well-functioning trajectory of HRQoL over 18 months. This trajectory included bodily pain (b = 1.02, odds ratio [OR] = 2.76), general health perception (b = 1.28, OR = 3.60), social functioning (b = 1.12, OR = 3.05), vitality (b = 1.51, OR = 4.49), general mental health (b = 1.08, OR = 2.94), and mental component summary (b = 1.27, OR = 3.55). Home-based caregiver training can be considered as part of the protocol for managing patients with dementia and their caregivers. NCT02667951. Copyright © 2016 Elsevier Inc. All rights reserved.

[Problems in the process of adapting to change among the family caregivers of elderly people with dementia].

PubMed

Moreno-Cámara, Sara; Palomino-Moral, Pedro Ángel; Moral-Fernández, Lourdes; Frías-Osuna, Antonio; Del-Pino-Casado, Rafael

2016-01-01

To identify and analyse problems in adapting to change among the family caregivers of relatives with dementia. Qualitative study based on the methodology of Charmaz's Constructivist Grounded Theory. Seven focus groups were conducted in different primary health care centres in the province of Jaen (Spain). Eighty-two primary family caregivers of relatives with dementia participated by purposeful maximum variation sampling and theoretical sampling. Triangulation analysis was carried out to increase internal validity. We obtained three main categories: 'Changing Care', 'Problems in the process of adapting to change' and 'Facilitators of the process of adapting to change'. Family caregivers perform their role in a context characterized by personal change, both in the person receiving the care and in the social and cultural context. The challenge of adaptation lies in the balance between the problems that hamper adaptation of the caregiver to new situations of care and the factors that facilitate the caregiver role. The adaptation of family caregivers to caring for a person with dementia is hindered by the lack of formal support and under-diagnosis of dementia. The adaptation process could be improved by strengthening formal support in the early stages of care to reduce the stress of family caregivers who must teach themselves about their task and by interventions adapted to each phase in the development of the caregiver role. Copyright © 2016 SESPAS. Published by Elsevier Espana. All rights reserved.

The influence of ethnicity and culture on dementia caregiving: a review of empirical studies on Chinese Americans.

PubMed

Sun, Fei; Ong, Rebecca; Burnette, Denise

2012-02-01

The purpose of this article is to pinpoint the cultural and ethnic influences on dementia caregiving in Chinese American families through a systemic review and analysis of published research findings. Eighteen publications on Chinese American dementia family caregivers published in peer-reviewed journals between 1990 and early 2011 were identified. Based on a systematic database search and review process, we found that caregivers' beliefs concerning dementia and the concept of family harmony as evidenced through the practice of filial piety are permeating cultural values, which together affect attitudes toward research and help-seeking behaviors (ie, seeking information on diagnosis and using formal services). There is also evidence to suggest that these cultural beliefs impinge on key elements of the caregiving process, including caregivers' appraisal of stress, coping strategies, and informal and formal support. The study concludes with recommendations for future research and practice with the Chinese American population.

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.

Effectiveness of a Grief Intervention for Caregivers of People With Dementia.

PubMed

MacCourt, Penny; McLennan, Marianne; Somers, Sandie; Krawczyk, Marian

2017-08-01

In this article, we report on the structure and effectiveness of a grief management coaching intervention with caregivers of individuals with dementia. The intervention was informed by Marwit and Meuser's Caregiver Grief Model and considered levels of grief, sense of empowerment, coping, and resilience using five methods of delivery. Results indicate that the intervention had significant positive effects on caregivers' levels of grief and increased their levels of empowerment, coping, and resilience. The intervention was found to be effective across caregivers' characteristics as well as across five delivery modalities. Through description of this intervention, as well as outcome, this research contributes to the body of knowledge about caregivers' disenfranchised grief and ways to effectively address it.

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

Experiences and concerns of family caregivers providing support to people with dementia: a cross-cultural perspective.

PubMed

Ivey, Susan L; Laditka, Sarah B; Price, Anna E; Tseng, Winston; Beard, Renée L; Liu, Rui; Fetterman, David; Wu, Bei; Logsdon, Rebecca G

2013-11-01

We examined experiences and concerns among caregivers of community-dwelling people with dementia from two ethnic groups. We conducted a thematic analysis of responses to the question, 'What is your life like as a caregiver?' in nine focus groups (n = 75) with Filipino and non-Hispanic White caregivers. Constant comparison methods identified themes by ethnicity. Experiences and concerns expressed across groups were related to care recipient symptoms commonly associated with dementia, including severe memory loss and behavioral changes. Participants in both ethnic groups described strategies that help them cope, such as receiving help from family and friends, receiving respite support, and participating in support groups. Filipino caregivers more often emphasized positive aspects of caregiving, whereas Whites often expressed that others do not understand the daily experiences of caregiving. Filipinos more commonly described caregivers as a 'good person' or 'saint' and emphasized that caregiving made them stronger.

A virtual reality intervention to improve the understanding and empathy for people with dementia in informal caregivers: results of a pilot study.

PubMed

Wijma, Eva M; Veerbeek, Marjolein A; Prins, Marleen; Pot, Anne Margriet; Willemse, Bernadette M

2017-07-10

Informal caregivers often experience psychological distress due to the changing functioning of the person with dementia they care for. Improved understanding of the person with dementia reduces psychological distress. To enhance understanding and empathy in caregivers, an innovative technology virtual reality intervention Through the D'mentia Lens (TDL) was developed to experience dementia, consisting of a virtual reality simulation movie and e-course. A pilot study of TDL was conducted. A pre-test-post-test design was used. Informal caregivers filled out questionnaires assessing person-centeredness, empathy, perceived pressure from informal care, perceived competence and quality of the relationship. At post-test, additional questions about TDL's feasibility were asked. Thirty-five caregivers completed the pre-test and post-test. Most participants were satisfied with TDL and stated that TDL gave more insight in the perception of the person with dementia. The simulation movie was graded 8.03 out of 10 and the e-course 7.66. Participants significantly improved in empathy, confidence in caring for the person with dementia, and positive interactions with the person with dementia. TDL is feasible for informal caregivers and seems to lead to understanding of and insight in the experience of people with dementia. Therefore, TDL could support informal caregivers in their caregiving role.

Impact of Behavioral Symptoms in Dementia Patients on Depression in Daughter and Daughter-in-Law Caregivers.

PubMed

Lee, Juwon; Sohn, Bo Kyung; Lee, Hyunjoo; Seong, Sujeong; Park, Soowon; Lee, Jun-Young

2017-01-01

One caregiver relationship that has been neglected in caregiver depression research is the daughter-in-law. Compared with Western countries, in which those who are closer in familial relationships such as the spouse or child usually take care of the patient, in many Asian countries, the daughter-in-law often assumes the caretaker role. However, not much research has been done on how this relationship may result in different caregiver outcomes. We sought to identify whether the association between patient characteristics and caregiver depressive symptoms differs according to the familial relationship between caregiver and patient. Ninety-five daughter (n = 47) and daughter-in-law (n = 48) caregivers of dementia patients were asked to report their own depressive symptoms and patient behavioral symptoms. Patients' cognitive abilities, daily activities, and global dementia ratings were obtained. Hierarchical linear regression was employed to determine predictors of depressive symptoms. Daughters-in-law had marginally higher depressive scores. After adjusting for caregiver and patient characteristics, in both groups, greater dependency in activities of daily living and more severe and frequent behavioral symptoms predicted higher caregiver depressive scores. However, greater severity and frequency of behavioral symptoms predicted depression to a greater degree in daughters compared with daughters-in-law. Although behavioral symptoms predicted depression in both caregiver groups, the association was much stronger for daughters. This suggests that the emotional relationship between the daughter and patient exacerbates the negative effect of behavioral symptoms on caregiver depression. The familial relationship between the caregiver and dementia patient should be considered in managing caregiver stress.

Recruiting Chinese Americans for dementia caregiver intervention research: suggestions for success.

PubMed

Gallagher-Thompson, Dolores; Rabinowitz, Yaron; Tang, Paulette C Y; Tse, Collins; Kwo, Elizabeth; Hsu, Shannon; Wang, Peng-Chih; Leung, Laurie; Tong, Hui-Qi; Thompson, Larry W

2006-08-01

The purpose of this study was to compare the relative effectiveness of three recruitment modalities for enrolling Chinese-American and white family caregivers into research studies to evaluate intervention strategies. A total of 116 Chinese Americans and 134 whites were screened for eligibility to participate in one of two clinical intervention trials. Participants were recruited using: 1) media sources; 2) nonprofessional referral sources; or 3) professional referrals. Each participant was asked an open-ended question about how they became aware of the programs offered. A smaller proportion of Chinese Americans (39%) than whites (50%) who responded to recruiting strategies actually enrolled as subjects. There was a significant interaction between ethnicity and recruitment strategy. Chinese-American caregivers who were recruited by nonprofessional sources were less likely to enroll in the intervention studies than those who were recruited through media sources or professional referrals. Whites, on the other hand, were more likely to be recruited through nonprofessional sources than the other two. A consumer-oriented approach, which included direct face-to-face contact with key community leaders, generated the highest number of Chinese-American participants. Culture-specific factors such as trust-building with social service agencies, demonstrating genuine commitment to the well-being of the target community, and linguistic and ethnic matching between research staff and potential participants appear helpful to successful research recruitment in this rapidly increasing segment of dementia caregivers.

Compassion Fatigue: An Application of the Concept to Informal Caregivers of Family Members with Dementia

PubMed Central

Day, Jennifer R.; Anderson, Ruth A.

2011-01-01

Introduction. Compassion fatigue is a concept used with increasing frequency in the nursing literature. The objective of this paper is to identify common themes across the literature and to apply these themes, and an existing model of compassion fatigue, to informal caregivers for family members with dementia. Findings. Caregivers for family members with dementia may be at risk for developing compassion fatigue. The model of compassion fatigue provides an informative framework for understanding compassion fatigue in the informal caregiver population. Limitations of the model when applied to this population were identified as traumatic memories and the emotional relationship between parent and child, suggesting areas for future research. Conclusions. Research is needed to better understand the impact of compassion fatigue on informal caregivers through qualitative interviews, to identify informal caregivers at risk for compassion fatigue, and to provide an empirical basis for developing nursing interventions for caregivers experiencing compassion fatigue. PMID:22229086

Factors Concerning Veterans With Dementia, Their Caregivers, and Coordination of Care: A Systematic Literature Review.

PubMed

Mileski, Michael; Scott Kruse, Clemens; Brooks, Matthew; Haynes, Christine; Collingwood, Ying; Rodriguez, Rachel

2017-11-01

Military veterans diagnosed with dementia compose a large portion of our population. Often ignored are their caregivers and their plight as well as the availability, quality, and accessibility of health care for this demographic. The purpose of this systematic literature review is three fold: to identify opportunities available to increase public awareness on the subject; to identify areas of improvement in the level of care and quality of life for our nation's veterans; and to identify if adequate resources are available to veterans with dementia and their caregivers. The authors conducted systematic searches of three databases: PubMed via The National Center for Biotechnology Information, the Cumulative Index of Nursing and Allied Health Literature (CINAHL) Complete via Ebson B. Stephens Company (EBSCO Host), and Google. Data were collected regarding providing care to veterans who are suffering from dementia or Alzheimer's disease and their caregivers between 2008 and June 2016. Search results were filtered by date range, full text, English language, Boolean operators, and academic journals (n = 14). The review confirmed there are many facilitators and barriers in the coordination of care offered to veterans with dementia. Facilitators of quality care include veteran's expectations, family support, program development, and the availability of services. These positive aspects are aided by several community-based support services, new technology, and preventative care. Barriers are caregiver expectations, coordination of care, providers, and informal and formal costs. These negative facets are due to lack of educational resources, an increased veteran population diagnosed with dementia, limited knowledge of resources, and limited medical service in rural areas. Overall, there are a number of community programs that want to, and can, help veterans with dementia. There are also a number of ways to help veterans with dementia cope with their issues, which include

Telecommunications technology as an aid to family caregivers of persons with dementia.

PubMed

Czaja, Sara J; Rubert, Mark P

2002-01-01

The aging of the population implies that an increased number of people are going to need some form of care or assistance. Caregiving poses a range of physical, emotional, and financial demands and often causes burden and stress for family members. This article describes how technology can be used to provide support to caregivers and increase the quality of life for both caregivers and care recipients. Preliminary data from an ongoing study of dementia caregivers is provided to demonstrate the feasibility of using technological interventions for this population. The intervention involves a telecommunications system designed to augment a family therapy intervention by enhancing access to formal and informal support services. Specifically the system is intended to facilitate linkages between caregivers and other family members, friends, and other caregivers as well as to facilitate access to information on available resources. A total of 76 caregivers of dementia patients, including Cuban American and white American caregivers, received the telecommunications intervention. Data include real-time usage data and measures of usability at 6 months, 12 months, and 18 months after the initiation of the intervention. The data reported in this article are based on responses to the usability questionnaire at 6 months from a sample of 44 caregivers. Overall the results indicate that the system is easy to use and the caregivers find it valuable. The most common reason that the caregivers use the system is to communicate with other caregivers, especially those who are not nearby. The caregivers, especially the Cuban Americans, reported that the system facilitated their ability to communicate with family members and their therapist. The caregivers also indicated that they found participation in the "online discussion" groups to be very valuable and also found the "online resource guide"useful. The results demonstrate how current information and communication technologies can be

Effects of an adapted leisure education program as a means of support for caregivers of people with dementia.

PubMed

Carbonneau, Hélène; Caron, Chantal D; Desrosiers, Johanne

2011-01-01

The loss of autonomy associated with dementia affects the people with dementia themselves as well as their caregivers who are often left feeling powerless and incompetent in their caregiving role. Most of the programs developed to support caregivers focus on burden and do not consider the positive aspects of caregiving. Leisure represents a way to enhance the presence of positive aspects in the caring experience. Moreover, leisure might contribute to the maintenance of satisfactory relationships between the caregivers and the person with dementia. An adapted leisure education program was developed as a means of support to caregiver involvement. This study (n=49) aims to evaluate the impact of this program on caregivers' well-being, self-efficacy towards adapted leisure, and quality of the relationship with the care receiver. Mixed methods were used. Pretest-posttest with a follow-up design made up the quantitative part. In addition, open-end interviews (n=10) were conducted. The quantitative results showed few impacts of the program on caregivers. However, the qualitative analysis revealed that the intervention had positive impacts for the caregivers, care receivers and other family members. This study introduces caregiver support in a new, positive perspective by focusing on the positive aspects of caregiving rather than the burden. Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.

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. © The Author(s) 2015.

Exploring the relationship between physical health, depressive symptoms, and depression diagnoses in Hispanic dementia caregivers.

PubMed

Cucciare, Michael A; Gray, Heather; Azar, Armin; Jimenez, Daniel; Gallagher-Thompson, Dolores

2010-04-01

The present study examined the relationship between self-reported physical health, depressive symptoms, and the occurrence of depression diagnosis in Hispanic female dementia caregivers. Participants were 89 Hispanic female dementia caregivers. This study used a cross-sectional design. Baseline depression and physical health data were collected from participants enrolled in the 'Reducing Stress in Hispanic Anglo Dementia Caregivers' study sponsored by the National Institute on Aging. Physical health was assessed using the Medical Outcome Study Short Form-36 (SF-36), a one-item self-report health rating, body mass index, and the presence or history of self-reported physical illness. Depressive symptoms were assessed using the Center for Epidemiologic Studies-Depression Scale (CES-D). The occurrence of depression diagnosis was assessed using the Clinical Interview for DSM-IV Axis I Disorders (SCID). Multiple linear and logistic regression analysis was used to examine the extent to which indices of physical health and depressive symptoms accounted for variance in participants' depressive symptoms and depressive diagnoses. Self-reported indices of health (e.g., SF-36) accounted for a significant portion of variance in both CES-D scores and SCID diagnoses. Caregivers who reported worsened health tended to report increased symptoms of depression on the CES-D and increased likelihood of an SCID diagnosis of a depressive disorder. Self-reported health indices are helpful in identifying Hispanic dementia caregivers at risk for clinical levels of depression.

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…

Northern Manhattan Hispanic Caregiver Intervention Effectiveness Study: protocol of a pragmatic randomised trial comparing the effectiveness of two established interventions for informal caregivers of persons with dementia

PubMed Central

Luchsinger, José A; Burgio, Louis; Mittelman, Mary; Dunner, Ilana; Levine, Jed A; Kong, Jian; Silver, Stephanie; Ramirez, Mildred; Teresi, Jeanne A

2016-01-01

Introduction The prevalence of dementia is increasing without a known cure, resulting in an increasing number of informal caregivers. Caring for a person with dementia results in increased stress and depressive symptoms. There are several behavioural interventions designed to alleviate stress and depressive symptoms in caregivers of persons with dementia with evidence of efficacy. Two of the best-known interventions are the New York University Caregiver Intervention (NYUCI) and the Resources for Enhancing Alzheimer's Caregivers Health (REACH). The effectiveness of the NYUCI and REACH has never been compared. There is also a paucity of data on which interventions are more effective in Hispanics in New York City. Thus, we proposed the Northern Manhattan Hispanic Caregiver intervention Effectiveness Study (NHiCE), a pragmatic clinical trial designed to compare the effectiveness of adaptations of the NYUCI and the REACH in informal Hispanic caregivers of persons with dementia in New York City. Methods and analysis NHiCE is a 6-month randomised controlled trial comparing the effectiveness of adaptations of the NYUCI and REACH among 200 Hispanic informal adult caregivers of persons with dementia. The planned number of sessions of the NYUCI and REACH are similar. The primary outcome measures are changes from baseline to 6 months in the Zarit Caregiver Burden Scale and Geriatric Depression Scale. Our primary approach to analyses will be intent-to-treat. The primary analyses will use mixed random effects models, and a full information maximum likelihood approach, with sensitivity analyses using generalised estimating equation. Ethics and dissemination NHiCE is approved by the Institutional Review Board of Columbia University Medical Center (protocol AAAM5150). A Data Safety Monitoring Board monitors the progress of the study. Dissemination will include reports of the characteristics of the study participants, as well as a report of the results of the clinical trial. Trial

[Day hospitals--predictors for utilisation and quality expectations from the perspective of family caregivers of dementia patients].

PubMed

Donath, Carolin; Bleich, Stefan; Grässel, Elmar

2009-05-01

To relieve the burden on family caregivers of dementia patients, the utilisation of day hospitals should be increased. Therefore, the predictive variables for utilisation as well as family caregivers' views regarding the quality of day hospitals must be investigated. The cross-sectional study was carried out as an anonymous, written survey of family caregivers of dementia patients in four regions of Germany. Quantitative and qualitative data from 404 family caregivers was analysed using binary logistic regression analysis and qualitative content analysis, respectively. In addition, 11 day hospital managers were interviewed concerning their quality concepts. The only significant predictor for the utilisation of day hospitals is the estimate of how helpful this support is for the family caregiver's situation. Those who have already had experiences with a day hospital expressed a wish for medical and psychiatric care by "well-trained" staff and a reasonable form of occupation for the dementia patient. In order to increase utilisation, family caregivers must be convinced of the advantages of using day hospitals. A day hospital that combines both activating occupational therapy and medical care by well-trained staff is what family caregivers wish most for their care-receivers.

A Customized Intervention for Dementia Caregivers: A Quasi-Experimental Design.

PubMed

Wawrziczny, Emilie; Larochette, Clotilde; Papo, David; Constant, Emilie; Ducharme, Francine; Kergoat, Marie-Jeanne; Pasquier, Florence; Antoine, Pascal

2018-04-01

The aim of this study is to test the effects of a customized intervention on distress among caregivers of persons with dementia (PWD) using a quasi-experimental design. Fifty-one spouse caregivers in the experimental group and 51 in the control group participated in the study. The effects of the intervention were examined by comparing caregivers' responses with questionnaires at pre-intervention baseline (T0) and immediately after intervention (T1). Differences were quantified using repeated-measures ANOVA. The analyses indicated a stabilizing effect of the intervention on caregivers' perceptions of PWD's daily functioning, self-esteem related to caregiving, quality of family support, and feeling of distress. Linear increases were observed regarding sense of preparedness and impact on daily routine, while no differences (interaction and linear effects) were observed for degree of self-efficacy, depression, impact on finances, or self-rated health. These findings show a preliminary efficacy of the intervention proposed in this study to prevent the exacerbation of caregivers' distress.

Mental health and physical health of family caregivers for persons with dementia: a comparison of African American and white caregivers.

PubMed

Knight, B G; Longmire, C V Flynn; Dave, J; Kim, J H; David, S

2007-09-01

This investigation analyzed the differences between African American and white caregivers in the effects of family caregiving for a person with dementia on mental health and physical health variables (including subjective health, reported diseases and cardiovascular measures). A population-based sample of 102 caregivers is compared with 102 non-caregivers matched on ethnicity, gender and age. There were no significant group differences for mental health effects. Most significant physical health effects were attributable to main effects of ethnicity rather than caregiving status. However, African American caregivers had higher diastolic blood pressure than all other groups, a finding consistent with group-specific risk for circulatory system disorders.

Advance Directives as Support of Autonomy for Persons with Dementia? A Pilot Study among Persons with Dementia and Their Informal Caregivers

PubMed Central

Schmidhuber, Martina; Haeupler, Sandra; Marinova-Schmidt, Velislava; Frewer, Andreas; Kolominsky-Rabas, Peter L.

2017-01-01

Background Advance directives could be an important instrument to support a person's will once he/she is not able to consent anymore – if composed competently. A survey was conducted to identify the level of knowledge concerning possibilities and limits of advance directives. Methods The study was conducted as part of the Bavarian Dementia Survey (BayDem). Data were collected from January 2014 to December 2015 by structured face-to-face interviews. Study participants were persons with dementia and their informal caregivers (n = 74). Results In total, 66% reported having written an advance directive. Concerning the participants' knowledge about possibilities and limitations of advance directives, a lack of knowledge was noted about the possibility to revoke an advance directive. Furthermore, 70% of informal caregivers and 56% of persons with dementia were not aware of the possibility to include dementia-specific terms in the advance directive. Conclusion It is necessary to optimize structures for public information and education concerning the topic of advance directives for persons with dementia. PMID:29118785

Experiences and Expectations of Bereavement Contact among Caregivers of Patients with Advanced Cancer.

PubMed

Makarem, Maisam; Mohammed, Shan; Swami, Nadia; Pope, Ashley; Kevork, Nanor; Krzyzanowska, Monika; Rodin, Gary; Hannon, Breffni; Zimmermann, Camilla

2018-05-16

Contact with bereaved caregivers is not standard practice among cancer physicians, and little is known about its impact on caregivers. Our aim was to describe the experiences and opinions of caregivers regarding bereavement contact from healthcare providers (HCP). Semistructured qualitative interviews were conducted with 61 bereaved caregivers. Bereaved caregivers of advanced cancer patients who had completed a randomized controlled trial of an early palliative care intervention were approached one to five years after the patient's death. Caregivers completed qualitative interviews from April 2012 to March 2015 after completion of quantitative measures. In semistructured interviews, bereaved caregivers were asked to describe the contact they received from HCP after the patient's death and their opinions about bereavement contact. We used thematic analysis informed by grounded theory to code and analyze the data. Of 60 caregivers included in the study, 30 (50%) received bereavement contact. There were no thematic differences between trial arms. The themes "contact reflects caring," "contact offers support," and "contact facilitates closure" were prominent among those who were contacted. "Contact is a courtesy," "contact is not always necessary," and "caregiver-initiated contact" were most evident among those who were not contacted. Overall, contact was appreciated by those who received it; for those who did not, reactions included rationalization, ambivalence, and regret. No negative consequences of contact were reported. Bereavement contact is well received and may be missed if not provided. These data support integration of bereavement contact into routine supportive care for caregivers.

[Comparing case management care models for people with dementia and their caregivers: the design of the COMPAS study].

PubMed

van Hout, H P J; Macneil Vroomen, J L; Van Mierlo, L D; Meiland, F J M; Moll van Charante, E P; Joling, K J; van den Dungen, P; Dröes, R M; van der Horst, H E; de Rooij, S E J A

2014-04-01

Dementia care in The Netherlands is shifting from fragmented, ad hoc care to more coordinated and personalized care. Case management contributes to this shift. The linkage model and a combination of intensive case management and joint agency care models were selected based on their emerging prominence in The Netherlands. It is unclear if these different forms of case management are more effective than usual care in improving or preserving the functioning and well-being at the patient and caregiver level and at the societal cost. The objective of this article is to describe the design of a study comparing these two case management care models against usual care. Clinical and cost outcomes are investigated while care processes and the facilitators and barriers for implementation of these models are considered. Mixed methods include a prospective, observational, controlled, cohort study among persons with dementia and their primary informal caregiver in regions of The Netherlands with and without case management including a qualitative process evaluation. Community-dwelling individuals with a dementia diagnosis with an informal caregiver are included. The primary outcome measure is the Neuropsychiatric Inventory for the people with dementia and the General Health Questionnaire for their caregivers. Costs are measured from a societal perspective. Semi-structured interviews with stakeholders based on the theoretical model of adaptive implementation are planned. 521 pairs of persons with dementia and their primary informal caregiver were included and are followed over two years. In the linked model substantially more impeding factors for implementation were identified compared with the model. This article describes the design of an evaluation study of two case management models along with clinical and economic data from persons with dementia and caregivers. The impeding and facilitating factors differed substantially between the two models. Further results on cost

Unmet Needs of Community-Residing Persons with Dementia and Their Informal Caregivers: Findings from the MIND at Home Study

PubMed Central

Black, Betty S.; Johnston, Deirdre; Rabins, Peter V.; Morrison, Ann; Lyketsos, Constantine; Samus, Quincy M.

2014-01-01

OBJECTIVES To determine the prevalence and correlates of unmet needs in a sample of community-residing persons with dementia (PWD) and their informal caregivers. DESIGN Analysis of cross-sectional, baseline participant characteristics prior to randomization in a care coordination intervention trial. SETTING Baltimore, MD. PARTICIPANTS Community-residing PWD (n=254) and their informal caregivers (n=246). MEASUREMENTS In-home assessments of dementia-related needs based on the Johns Hopkins Dementia Care Needs Assessment. Bivariate and multivariate regression analyses were conducted to identify demographic, socioeconomic, clinical, functional and quality of life correlates of unmet needs. RESULTS The mean number of unmet needs in PWD was 7.7 (SD=4.8) and 4.6 (SD=2.3) in caregivers, with almost all PWD (99%) and caregivers (97%) having one or more unmet needs. Unmet needs in PWD were significantly greater among those with higher cognitive function. Ninety percent of PWD had unmet safety needs, over half had unmet needs for meaningful activities, and almost one-third had not received a prior evaluation or diagnosis. Higher unmet needs in PWD were associated significantly with non-white race, lower incomes, less impairment in activities of daily living and more symptoms of depression. For caregivers, more than 85% had unmet needs for resource referrals and caregiver education. Higher unmet caregiver needs were associated significantly with non-white race, less education, and more symptoms of depression. CONCLUSION Many community-residing PWD and their caregivers have unmet dementia-related needs for care, services and support. Providers should be aware that unmet needs may be higher among minority and low-income community residents, caregivers with lower education, and individuals with early-stage dementia. Identifying and treating symptoms of depression in PWD and caregivers may enable them to address their other unmet needs. PMID:24479141

(In-)formal caregivers' and general practitioners' views on hospitalizations of people with dementia - an exploratory qualitative interview study.

PubMed

Pohontsch, Nadine Janis; Scherer, Martin; Eisele, Marion

2017-08-04

Dementia is an irreversible chronic disease with wide-ranging effects on patients', caregivers' and families' lives. Hospitalizations are significant events for people with dementia. They tend to have poorer outcomes compared to those without dementia. Most of the previous studies focused on diagnoses leading to hospitalizations using claims data. Further factors (e.g. context factors) for hospitalizations are not reproduced in this data. Therefore, we investigated the factors leading to hospitalization with an explorative, qualitative study design. We interviewed informal caregivers (N = 12), general practitioners (GPs, N = 12) and formal caregivers (N = 5) of 12 persons with dementia using a semi-structured interview guideline. The persons with dementia were sampled using criteria regarding their living situation (home care vs. nursing home care) and gender. The transcripts were analyzed using the method of structuring content analysis. Almost none of the hospitalizations, discussed with the (in-)formal caregivers and GPs, seemed to have been preventable or seemed unjustifiable from the interviewees' points of view. We identified several dementia-specific factors promoting hospitalizations (e.g. the neglect of constricted mobility, the declining ability to communicate about symptoms/accidents and the shift of responsibility from person with dementia to informal or formal caregivers) and context-specific factors promoting hospitalizations (e.g. qualification of nursing home personal, the non-availability of the GP and hospitalizations for examinations/treatments also available in ambulatory settings). Hospitalizations were always the result of the interrelation of two factors: illnesses/accidents and context factors. The impact of both seems to be stronger in presence of dementia. Points for action in terms of reducing hospitalization rates were: better qualified nurses, a 24-h-GP-emergency service and better compensation for ambulatory monitoring

E-care: a telecommunications technology intervention for family caregivers of dementia patients.

PubMed

Finkel, Sanford; Czaja, Sara J; Schulz, Richard; Martinovich, Zoran; Harris, Carol; Pezzuto, Donna

2007-05-01

This study evaluated the effectiveness of a technology-based psychoeducational intervention for family caregivers of dementia patients. An additional objective was to determine if the intervention could be implemented by a community-based social service agency. Forty-six caregivers were randomly assigned to either a technology-based intervention or an information-only control condition. Caregivers assigned to the intervention condition reported a significant decrease in burden postintervention and those who evidenced high depression at baseline experienced a significant decline in depression. This study provides evidence that technology offers a cost-effective and practical method for delivering interventions to caregivers.

Resources for people with dementia: the Alzheimer Society and beyond.

PubMed

Frank, Christopher; Feldman, Sid; Schulz, Mary

2011-12-01

To summarize services provided by the Alzheimer Society and discuss other supports and resources available for the management of people with dementia. Ovid MEDLINE was searched using the terms dementia, Alzheimer disease, community health services utilization, and caregiver stress. Early diagnosis of dementia has been shown to be of benefit to patients and caregivers. Referral to the Alzheimer Society can help with nonpharmacologic management of dementia at the time of diagnosis and at any time during the course of the illness. Services include education about dementia, caregiver support, coordination of community services, and a variety of written resources for patients and caregivers. When available, the First Link program can assist with referral by minimizing the need for patients or caregivers to contact their local society branches. Other resources, including respite care and technological approaches to managing wandering, are discussed. The Alzheimer Society is an important part of dementia management, and family physicians should always consider referral at the time of diagnosis, regardless of the severity of the condition. First Link, when it is available, can facilitate referral. Resources such as respite care and day programs should be considered when available.

Sudden-On-Chronic Death and Complicated Grief in Bereaved Dementia Caregivers: Two Case Studies of Complicated Grief Group Therapy.

PubMed

Supiano, Katherine P; Andersen, Troy C; Haynes, Lara Burns

2015-01-01

Caring for a person with Alzheimer's disease is challenging and often has negative health and mental health effects that, for 7-20% of caregivers, persist into bereavement in the form of complicated grief. Complicated grief is a state of prolonged and ineffective mourning. An under-recognized phenomenon in dementia care and bereavement is "sudden-on-chronic death." In these situations, the caregiver is preparing for a gradual dying process from dementia, but the care recipient dies instead from a sudden death. In this study, an application of complicated grief group therapy for bereaved dementia caregivers with complicated grief is presented, and the effect of therapy with two bereaved caregivers who experienced the sudden death of their spouses who had a diagnosis of dementia is described. The unique treatment elements of complicated grief group therapy facilitated resolution of the 'trauma-like" features of bereavement and progression to a healthy grief process.

Lived Experience of Caregivers of Persons with Dementia and the Impact on their Sense of Self: A Qualitative Study in Singapore.

PubMed

Tuomola, Jane; Soon, Jiaying; Fisher, Paul; Yap, Philip

2016-06-01

The prevalence of dementia is increasing, especially in Asia. Caregivers of people with dementia are at greater risk of psychological morbidity; however, most studies on caregiving have been conducted in Western populations. As a caregiver's experience can be influenced by cultural factors, this needs exploring further. This study explored the lived experience of caregivers of dementia patients in Singapore and the impact of caring on their sense of self. Six Chinese female spousal caregivers were interviewed and their experiences were analyzed using interpretative phenomenological analysis (IPA). Four super-ordinate themes were identified: impact of caregiving, acceptance of destiny, taking control, and view of self. The findings reflected the influence of Confucian values. Clinical implications are discussed, including more culturally sensitive services.

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. © The Author(s) 2014.

Reconciling work and family caregiving among adult-child family caregivers of older people with dementia: effects on role strain and depressive symptoms.

PubMed

Wang, Yu-Nu; Shyu, Yea-Ing Lotus; Chen, Min-Chi; Yang, Pei-Shan

2011-04-01

This paper is a report of a study that examined the effects of work demands, including employment status, work inflexibility and difficulty reconciling work and family caregiving, on role strain and depressive symptoms of adult-child family caregivers of older people with dementia. Family caregivers also employed for pay are known to be affected by work demands, i.e. excessive workload and time pressures. However, few studies have shown how these work demands and reconciliation between work and family caregiving influence caregivers' role strain and depressive symptoms. For this cross-sectional study, secondary data were analysed for 119 adult-child family caregivers of older people with dementia in Taiwan using hierarchical multiple regression. After adjusting for demographic characteristics, resources and role demands overload, family caregivers with full-time jobs (β=0.25, P<0.01) and more difficulty reconciling work and caregiving roles (β=0.36, P<0.01) reported significantly more role strain than family caregivers working part-time or unemployed. Family caregivers with more work inflexibility reported more depressive symptoms (β=0.29, P<0.05). Work demands affected family caregivers' role strain and depressive symptoms. Working full-time and having more difficulty reconciling work and caregiving roles predicted role strain; work inflexibility predicted depressive symptoms. These results can help clinicians identify high-risk groups for role strain and depression. Nurses need to assess family caregivers for work flexibility when screening for high-risk groups and encourage them to reconcile working with family-care responsibilities to reduce role strain. © 2010 Blackwell Publishing Ltd.

Factors of Resilience in Informal Caregivers of People with Dementia from Integrative International Data Analysis.

PubMed

Joling, Karlijn J; Windle, Gill; Dröes, Rose-Marie; Meiland, Franka; van Hout, Hein P J; MacNeil Vroomen, Janet; van de Ven, Peter M; Moniz-Cook, Esmé; Woods, Bob

2016-01-01

Although caring for a person with dementia can be stressful, some caregivers appear to experience few negative consequences to their well-being. This study aimed to examine what proportion of caregivers demonstrates resilience under different challenging circumstances and to identify factors related to their resilience. Baseline data from 4 studies from the Netherlands and UK among informal caregivers of people with dementia were harmonized and integrated. Caregiver resilience was defined as high levels of psychological well-being despite different types of high caregiving demands. Multivariate regression analyses identified factors significantly related to caregiver resilience. The integrated data set included 15 harmonized variables with data from 1,048 caregivers facing a high care demand. The prevalence of resilience varied between 35 and 43%, depending on the demand for high care. Being a male caregiver, caring for a female, living apart from your relative, and low caregiver burden were positively related to caregiver resilience. Caregivers have the capacity to demonstrate resilience despite significant challenges. This study demonstrates how harmonization of data from multiple existing studies can be used to increase power and explore the consistency of findings. This contributes to a better understanding of which factors are likely to facilitate caregiver resilience and offers insights for developing services. © 2016 The Author(s) Published by S. Karger AG, Basel.

Examining Live-In Foreign Domestic Helpers as a Coping Resource for Family Caregivers of People With Dementia in Singapore.

PubMed

Basnyat, Iccha; Chang, Leanne

2017-09-01

In Singapore, the responsibility of caring for persons with dementia falls on family members who cope with a long-term caregiver burden, depending on available support resources. Hiring foreign domestic workers to alleviate caregiver burden becomes a prevalent coping strategy that caregivers adopt. This strategy allows caregivers to provide home care as part of fulfilling family obligations while managing the caregiver burden. This study aimed to investigate primary caregivers' relationship with hired support and its impact on coping with caregiver burden. Twenty in-depth interviews were conducted with primary caregivers who hired live-in domestic helpers to take care of their family members with dementia. The findings revealed that caregivers perceived the normative obligations to provide home care to family members with dementia. They sought support from domestic helpers to cope with physical and mental burnout, disruption of normal routines, and avoidance of financial strain. A mutual-support relationship was built between caregivers and domestic helpers through trust and interdependence. The presence of domestic helpers as a coping resource reveals the positive outcomes of problem-, emotional-, and diversion-focused coping. This study illustrates that coping strategies are employed in different ways depending on the needs of caregivers, access to infrastructure, cultural expectations, and available resources.

Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community.

PubMed

Matsumoto, Naomi; Ikeda, Manabu; Fukuhara, Ryuji; Shinagawa, Shunichiro; Ishikawa, Tomohisa; Mori, Takaaki; Toyota, Yasutaka; Matsumoto, Teruhisa; Adachi, Hiroyoshi; Hirono, Nobutsugu; Tanabe, Hirotaka

2007-01-01

Despite many studies about the association between caregiver burden and behavioral and psychological symptoms of dementia (BPSD), there have been no population-based studies to evaluate caregiver burden associated with each BPSD. To evaluate caregiver burden associated with the individual BPSD in elderly people living in the community. The subjects were 67 participants with dementia living with their caregivers (diagnosed in the third Nakayama study): 51 Alzheimer's disease, 5 vascular dementia and 11 other. The Neuropsychiatric Inventory (NPI) and NPI Caregiver Distress Scale (NPI-D) were used to assess subjects' BPSD and related caregiver distress, respectively. In the subjects exhibiting BPSD, aberrant motor behavior had the highest mean NPI score, and depression/dysphoria had the lowest. Agitation/aggression had the highest mean NPI-D score, and euphoria/elation had the lowest. Delusion, agitation/aggression, apathy/indifference, irritability/lability and aberrant motor behavior showed a correlation between the NPI and NPI-D scores. The burden associated with BPSD is different for each symptom and does not always depend on frequency and severity of BPSD. These findings suggest that some symptoms, such as agitation/aggression and irritability/lability, may affect the caregivers significantly, although their frequency and severity are low. Copyright (c) 2007 S. Karger AG, Basel.

The Maine Savvy Caregiver Project: translating an evidence-based dementia family caregiver program within the RE-AIM Framework.

PubMed

Samia, Linda W; Aboueissa, AbouEl-Makarim; Halloran, Jan; Hepburn, Kenneth

2014-01-01

This article presents findings of a 3-year Savvy Caregiver Program translational study designed with the RE-AIM framework to create a statewide sustainable infrastructure and improve dementia family caregiver outcomes in one rural state. The RE-AIM dimensions--reach, effectiveness, adoption, implementation and maintenance--were evaluated using mixed methods. The program reached 770 caregivers and 87.7% (n = 676) participated in the study with 60.5% (n = 409) residing in rural locations. Participants demonstrated improved confidence, fewer depressive symptoms, and better managed their situation. Trainer resources, partnerships, and adequate planning were essential for program adoption and sustainability. Implications for replication are discussed.

The impact of relationships, motivations, and meanings on dementia caregiving outcomes.

PubMed

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

2012-11-01

Numerous theoretical models have been developed to explore how caregiving can impact on caregiving outcomes. However, limited attention has been given to the effects of caregivers' motivations for providing care, the meaning they find in caregiving, and the nature of their relationship with the care-recipient. The current study explored the associations between intrinsic and extrinsic motivations, ability to find meaning in caregiving, and pre-caregiving and current relationship quality, and the way in which these variables interact to influence caregiving outcomes. This was a cross-sectional questionnaire study, in which the respondents were 447 caregivers of people with dementia who were in receipt of a specialist nursing service. The results showed that intrinsic motivations, meaning, and pre-caregiving and current relationship quality were significantly related to each other, while extrinsic motivations were only related to intrinsic motivations and meaning. All these factors were significantly related to caregiving outcomes as measured by caregiver burden, role captivity, and competence. Based on these findings, it is recommended that interventions aimed at reducing caregiving stress should take into account the impact of the quality of the relationship and the caregivers' motivations for providing care. More longitudinal research is needed to explore how meanings, motivations, and relationship quality change over the caregiving career.

Northern Manhattan Hispanic Caregiver Intervention Effectiveness Study: protocol of a pragmatic randomised trial comparing the effectiveness of two established interventions for informal caregivers of persons with dementia.

PubMed

Luchsinger, José A; Burgio, Louis; Mittelman, Mary; Dunner, Ilana; Levine, Jed A; Kong, Jian; Silver, Stephanie; Ramirez, Mildred; Teresi, Jeanne A

2016-11-25

The prevalence of dementia is increasing without a known cure, resulting in an increasing number of informal caregivers. Caring for a person with dementia results in increased stress and depressive symptoms. There are several behavioural interventions designed to alleviate stress and depressive symptoms in caregivers of persons with dementia with evidence of efficacy. Two of the best-known interventions are the New York University Caregiver Intervention (NYUCI) and the Resources for Enhancing Alzheimer's Caregivers Health (REACH). The effectiveness of the NYUCI and REACH has never been compared. There is also a paucity of data on which interventions are more effective in Hispanics in New York City. Thus, we proposed the Northern Manhattan Hispanic Caregiver intervention Effectiveness Study (NHiCE), a pragmatic clinical trial designed to compare the effectiveness of adaptations of the NYUCI and the REACH in informal Hispanic caregivers of persons with dementia in New York City. NHiCE is a 6-month randomised controlled trial comparing the effectiveness of adaptations of the NYUCI and REACH among 200 Hispanic informal adult caregivers of persons with dementia. The planned number of sessions of the NYUCI and REACH are similar. The primary outcome measures are changes from baseline to 6 months in the Zarit Caregiver Burden Scale and Geriatric Depression Scale. Our primary approach to analyses will be intent-to-treat. The primary analyses will use mixed random effects models, and a full information maximum likelihood approach, with sensitivity analyses using generalised estimating equation. NHiCE is approved by the Institutional Review Board of Columbia University Medical Center (protocol AAAM5150). A Data Safety Monitoring Board monitors the progress of the study. Dissemination will include reports of the characteristics of the study participants, as well as a report of the results of the clinical trial. NCT02092987, Pre-results. Published by the BMJ Publishing Group

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. Copyright © 2014 by the American Occupational Therapy Association, Inc.

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. © The Author(s) 2015.

Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study.

PubMed

Lethin, Connie; Leino-Kilpi, Helena; Roe, Brenda; Soto, Maria Martin; Saks, Kai; Stephan, Astrid; Zwakhalen, Sandra; Zabalegui, Adelaida; Karlsson, Staffan

2016-01-29

In European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (≥65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease. A mapping system was used in 2010-2011 to gather information about estimations of availability, utilization, and professional providers of support to informal caregivers caring for PwD. Data collected was representing each country as a whole. There was high availability of counselling, caregiver support, and education from the diagnosis to the intermediate stage, with a decrease in the late to end of life stage. Utilization was low, although there was a small increase in the intermediate stage. Day care and respite care were highly available in the diagnosis to the intermediate stage, with a decrease in the late to end of life stage, but both types of care were utilized by few or no caregivers through any of the disease stages. Professionals specialized in dementia (Bachelor to Master's degree) provided counselling and education, whereas caregiver support for informal caregivers and day care, respite care, and respite care at home were provided by professionals with education ranging from upper secondary schooling to a Master's degree. Counselling, caregiver support, and education were highly available in European countries from diagnosis to the intermediate stage of the dementia disease, decreasing in the late/end of life stages but were rarely utilized. Countries with care systems based on national guidelines for dementia care seem to be more aware of the

Integrating unmet needs into dementia health-related quality of life research and care: Introduction of the Hierarchy Model of Needs in Dementia.

PubMed

Scholzel-Dorenbos, Carla J M; Meeuwsen, Els J; Olde Rikkert, Marcel G M

2010-01-01

To make an inventory of needs assessment instruments in dementia, to explore the interaction between unmet needs and health-related quality of life (HRQoL) and to relate these to the conceptual model of Maslow's Hierarchy of needs in order to design a dementia-specific model. Narrative review of literature on (measures of) needs of patients and caregivers and HRQoL determinants important in dementia. Relating these needs to individual goal setting instruments and Maslow's Hierarchy of needs model. The Camberwell Assessment of Needs for the Elderly (CANE) turns out to be a valid tool to assess needs of dementia patients, suitable for research and clinical use. The Carers' Needs Assessment for Dementia (CNA-D) is a valid instrument to assess needs of caregivers. Patients identified significantly fewer needs than (in)formal caregivers. The most important needs, that also determine large part of HRQoL, are need for information; support with regard to symptoms of dementia; social contact and company; and for health monitoring and safety. Goal attainment scaling in dementia is an important but not yet valid outcome measure, with only few data on feasibility in dementia patients. There are several instruments to assess needs of dementia patients and caregivers. Domains of unmet needs and HRQoL overlap. The Hierarchy Model of Needs in Dementia (HMND) offers a new theoretical framework to address the interplay between meeting of needs and improvement of HRQoL in dementia. By identifying unmet needs in dementia-research and focussing on unmet needs in dementia-care, much can be done to improve HRQoL.

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. © 2013, Copyright the Authors Journal compilation © 2013, The American Geriatrics Society.

Short-term residential care for dementia patients: predictors for utilization and expected quality from a family caregiver's point of view.

PubMed

Donath, Carolin; Winkler, Angelika; Grässel, Elmar

2009-08-01

Short-term residential care (SRC) has proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors which influence its usage or the expectations of family caregivers regarding quality. In this paper we address the following questions: (i) which variables of the care situation, the caregivers and their attitudes act as predictors for the utilization of SRC facilities? (ii) What are the views of caregivers about the quality of SRC? The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in four regions of Germany. With a 20% response it was possible to analyze the quantitative and qualitative data from 404 and 254 family caregivers respectively. Predictors for utilization were evaluated using binary logistic regression analysis. The answers to questions of quality were evaluated using qualitative content analysis. Significant predictors for the utilization of SRC are the assessment of the helpfulness of SRC and the caregiver's knowledge of the accessibility of SRC facilities. Family caregivers who had already used SRC most frequently expressed the wish for "good care" in SRC facilities, followed by a program of suitable activities for dementia patients. In order to increase the rate of utilization, family caregivers must be convinced of the relevant advantages of using SRC facilities. The staff should be trained in caring for dementia patients and appropriate activities should be available.

The experiences of Korean immigrant caregivers of non-English-speaking older relatives with dementia in American nursing homes.

PubMed

Kong, Eun-Hi; Deatrick, Janet A; Evans, Lois K

2010-03-01

The purpose of this article is to describe Korean immigrant caregivers' experiences regarding American nursing home placement of their non-English-speaking older relatives with dementia. Qualitative descriptive methods and qualitative content analysis were used. A total of 17 semistructured interviews were conducted with 10 Korean immigrant family caregivers. The "Korean way of thinking" emerged as a fundamental cultural belief about caregiving. Six major themes were identified: (a) I never thought about a nursing home; (b) If I think in a Korean way, I feel . . . ; (c) Nursing home staff cannot communicate with . . . ; (d) My care recipient maintains Korean culture; (e) Nursing home services are better than expected but . . . ; and (f) My care recipient is more vulnerable because of dementia. This study provides valuable insights for health care providers about communication and cultural issues of immigrant caregivers for non-English-speaking older relatives with dementia.

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. © The Author(s) 2013.

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. Copyright 2014, SLACK Incorporated.

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…

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

End of life care: The experiences of advance care planning amongst family caregivers of people with advanced dementia - A qualitative study.

PubMed

Ashton, Susan Elizabeth; Roe, Brenda; Jack, Barbara; McClelland, Bob

2016-09-01

End of life decisions for people with advanced dementia are reported as often being difficult for families as they attempt to make appropriate and justified decisions. To explore the experiences of advance care planning amongst family caregivers of people with advanced dementia. Qualitative research including a series of single cases (close family relatives). A purposive sample of 12 family caregivers within a specialist dementia unit was interviewed about their experiences of advance care planning between August 2009 and February 2010. Family caregivers need encouragement to ask the right questions during advance care planning to discuss the appropriateness of nursing and medical interventions at the end of life. Advance care planning can be facilitated with the family caregiver in the context of everyday practice within the nursing home environment for older people with dementia. © The Author(s) 2014.

Effectiveness of respite care in supporting informal caregivers of persons with dementia: a systematic review.

PubMed

Vandepitte, Sophie; Van Den Noortgate, Nele; Putman, Koen; Verhaeghe, Sofie; Verdonck, Caroline; Annemans, Lieven

2016-12-01

Supporting informal caregivers of persons with dementia is considered to be an effective strategy for improving the well-being of caregivers and care recipients and for delaying nursing home placement. Although considerable research has been conducted to investigate the effectiveness of psychoeducational interventions, cognitive behavioral therapy, and occupational therapy, research into the effectiveness of respite care is rare. This systematic review aims to investigate the effectiveness of different types of respite care in supporting informal caregivers of persons with dementia. A systematic literature search was conducted using Web of Science and PubMed, and the Quality Assessment Tool for Quantitative Studies was used to assess the methodological quality. Randomized controlled trials, quasi-experimental studies, pretest-posttest studies without a control group, and cohort studies were included. Seventeen papers met the inclusion criteria. Day care services are effective in decreasing caregiver burden and behavioral problems in persons with dementia, but they also accelerate time to nursing home admission. The results of temporary residential admission are rather mixed and show unexpected adverse effects on both caregivers and care recipients. High-quality comparable evidence on community-based respite care is still lacking, although earlier qualitative evidence indicated promising results. Unlike in previous reviews, we were able to draw some conclusions about the effectiveness of some types of respite care. There is nonetheless still a need for new intervention studies measuring the impact of respite care, especially in-home respite care programs, on the caregiver, the care recipient, and health care resource utilization. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

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…

Psychiatric and Physical Morbidity Effects of Dementia Caregiving: Prevalence, Correlates, and Causes.

ERIC Educational Resources Information Center

Schultz, Richard; And Others

1995-01-01

Assesses the prevalence and magnitude of psychiatric and physical morbidity effects among dementia caregivers, identifies individual and contextual correlates of reported health effects and their underlying causes, and examines the policy relevance of observed findings. (JPS)

Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers

PubMed Central

The, Anne-Mei

2018-01-01

Introduction Too often dementia care is still fragmented and unresponsive to the needs of people living with dementia and their family caregivers. To develop effective health care services, in-depth insight into the experiences of family caregivers is a prerequisite. Methods This Dutch study is a qualitative interview study. The aim was twofold: 1) to develop an in-depth understanding of what it means to live with dementia and 2) to gain insight into what constitutes the art of living with dementia, both from the perspective of family caregivers. Data were gathered through 47 interviews with individuals and 6 focus group interviews. The analysis followed a phenomenologically inspired thematic approach. Results The findings show that living with dementia can be understood as becoming entangled in uncertainty and isolation. The following themes illustrate this experience in various phases of the disease: a) Before the diagnosis: a growing uneasy feeling that something is amiss; b) The diagnostic disclosure: an uncertain and upsetting relief; c) Dementia at home: entangled in an isolated and exhausting life; d) Capitulation to relocation: torn between relief and grief. In addition, the study shows that the art of living with dementia is associated with: a) The ability to face tragedy; b) The discovery of meaning and dignity in the context of illness; c) Retaining a sense of connection and bond; d) The primacy of attention and recognition by others. Discussion and conclusion Our findings show that dealing with what Boss (2011) called ‘ambiguous loss-experiences’ is one of the most demanding aspects of living with dementia. Based on the findings, we have developed a model that depicts how people handle contingency and seek balance along the continuum of facing and resisting. Our study shows that resilience in the context of living with dementia should not be understood as merely an individual mental ability, nor as a set of behaviours, but rather as a social

Self-transcendence and family caregivers of adults with dementia.

PubMed

Acton, G J; Wright, K B

2000-06-01

Research has documented that caring for a family member with dementia is stressful and burdensome. However, difficult life experiences such as fear, loss, and grief may help persons move beyond a concern for self toward a larger perspective and concern for others. Both positive and negative experiences can promote positive movement toward growth and development. This movement has been described as self-transcendence, or the ability to look beyond the self and present difficulties, to extend concern to others, and to find personal meaning and wholeness in the context of life-changing events. The family caregiving experience with its inherent difficulties might provide the impetus for such a movement toward self-transcendence. The purpose of this article is to examine the concept of self-transcendence, explore its linkages to the caregiving experience, and suggest potential strategies to assist family caregivers to achieve self-transcendence.

Comparing Dutch case management care models for people with dementia and their caregivers: The design of the COMPAS study.

PubMed

MacNeil Vroomen, Janet; Van Mierlo, Lisa D; van de Ven, Peter M; Bosmans, Judith E; van den Dungen, Pim; Meiland, Franka J M; Dröes, Rose-Marie; Moll van Charante, Eric P; van der Horst, Henriëtte E; de Rooij, Sophia E; van Hout, Hein P J

2012-05-28

Dementia care in the Netherlands is shifting from fragmented, ad hoc care to more coordinated and personalised care. Case management contributes to this shift. The linkage model and a combination of intensive case management and joint agency care models were selected based on their emerging prominence in the Netherlands. It is unclear if these different forms of case management are more effective than usual care in improving or preserving the functioning and well-being at the patient and caregiver level and at the societal cost. The objective of this article is to describe the design of a study comparing these two case management care models against usual care. Clinical and cost outcomes are investigated while care processes and the facilitators and barriers for implementation of these models are considered. Mixed methods include a prospective, observational, controlled, cohort study among persons with dementia and their primary informal caregiver in regions of the Netherlands with and without case management including a qualitative process evaluation. Inclusion criteria for the cohort study are: community-dwelling individuals with a dementia diagnosis who are not terminally-ill or anticipate admission to a nursing home within 6 months and with an informal caregiver who speaks fluent Dutch. Person with dementia-informal caregiver dyads are followed for two years. The primary outcome measure is the Neuropsychiatric Inventory for the people with dementia and the General Health Questionnaire for their caregivers. Secondary outcomes include: quality of life and needs assessment in both persons with dementia and caregivers, activity of daily living, competence of care, and number of crises. Costs are measured from a societal perspective using cost diaries. Process indicators measure the quality of care from the participant's perspective. The qualitative study uses purposive sampling methods to ensure a wide variation of respondents. Semi-structured interviews with

Comparing Dutch Case management care models for people with dementia and their caregivers: The design of the COMPAS study

PubMed Central

2012-01-01

Background Dementia care in the Netherlands is shifting from fragmented, ad hoc care to more coordinated and personalised care. Case management contributes to this shift. The linkage model and a combination of intensive case management and joint agency care models were selected based on their emerging prominence in the Netherlands. It is unclear if these different forms of case management are more effective than usual care in improving or preserving the functioning and well-being at the patient and caregiver level and at the societal cost. The objective of this article is to describe the design of a study comparing these two case management care models against usual care. Clinical and cost outcomes are investigated while care processes and the facilitators and barriers for implementation of these models are considered. Design Mixed methods include a prospective, observational, controlled, cohort study among persons with dementia and their primary informal caregiver in regions of the Netherlands with and without case management including a qualitative process evaluation. Inclusion criteria for the cohort study are: community-dwelling individuals with a dementia diagnosis who are not terminally-ill or anticipate admission to a nursing home within 6 months and with an informal caregiver who speaks fluent Dutch. Person with dementia-informal caregiver dyads are followed for two years. The primary outcome measure is the Neuropsychiatric Inventory for the people with dementia and the General Health Questionnaire for their caregivers. Secondary outcomes include: quality of life and needs assessment in both persons with dementia and caregivers, activity of daily living, competence of care, and number of crises. Costs are measured from a societal perspective using cost diaries. Process indicators measure the quality of care from the participant’s perspective. The qualitative study uses purposive sampling methods to ensure a wide variation of respondents. Semi

The contribution of caregiver psychosocial factors to distress associated with behavioural and psychological symptoms in dementia.

PubMed

Feast, Alexandra; Orrell, Martin; Russell, Ian; Charlesworth, Georgina; Moniz-Cook, Esme

2017-01-01

The objective of the study is to examine caregiver factors as predictors of BPSD-related distress and their potential mechanisms. Informal caregivers of people with dementia (n = 157) recruited from 28 community mental health teams in six NHS Trusts across England completed questionnaires regarding psychosocial factors (relationship quality, competence, guilt, health-related quality of life in the caregiver and person with dementia, reactivity to behavioural and psychological symptoms in dementia [BPSD] and burden) and frequency of BPSD. Analyses of BPSD-related distress include hierarchical multiple regression, mediation, moderation and path analysis. Caregiver psychosocial factors explained 56% of the variance in BPSD-related distress. After controlling for these factors, frequency of BPSD was not a significant predictor of BPSD-related distress. Caregiver reactivity to BPSD, burden, competence and relationship quality directly influenced BPSD-related distress. Guilt influenced distress indirectly via competence, burden and reactivity to BPSD. The final model accounted for 41% of the variance in BPSD-related distress and achieved a good fit to the data (χ 2  = 23.920, df = 19, p = 0.199). Caregiver psychosocial factors including sense of competence, guilt, burden and reactivity to BPSD contribute to BPSD-related distress. Tailored interventions for managing behaviour problems in family settings could focus on these factors associated with BPSD-related distress to minimise distress in families. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

Caregiver profiles in dementia related to quality of life, depression and perseverance time in the European Actifcare study: the importance of social health.

PubMed

Janssen, Eveline P C J; de Vugt, Marjolein; Köhler, Sebastian; Wolfs, Claire; Kerpershoek, Liselot; Handels, Ron L H; Orrell, Martin; Woods, Bob; Jelley, Hannah; Stephan, Astrid; Bieber, Anja; Meyer, Gabriele; Engedal, Knut; Selbaek, Geir; Wimo, Anders; Irving, Kate; Hopper, Louise; Gonçalves-Pereira, Manuel; Portolani, Elisa; Zanetti, Orazio; Verhey, Frans R

2017-01-01

To identify caregiver profiles of persons with mild to moderate dementia and to investigate differences between identified caregiver profiles, using baseline data of the international prospective cohort study Actifcare. A latent class analysis was used to discover different caregiver profiles based on disease related characteristics of 453 persons with dementia and their 453 informal caregivers. These profiles were compared with regard to quality of life (CarerQoL score), depressive symptoms (HADS-D score) and perseverance time. A 5-class model was identified, with the best Bayesian Information Criterion value, significant likelihood ratio test (p < 0.001), high entropy score (0.88) and substantive interpretability. The classes could be differentiated on two axes: (i) caregivers' age, relationship with persons with dementia, severity of dementia, and (ii) tendency towards stress and difficulty adapting to stress. Classes showed significant differences with all dependent variables, and were labelled 'older low strain', 'older intermediate strain', 'older high strain', 'younger low strain' and 'younger high strain'. Differences exist between types of caregivers that explain variability in quality of life, depressive symptoms and perseverance time. Our findings may give direction for tailored interventions for caregivers of persons with dementia, which may improve social health and reduce health care costs.

Psychological well-being over time among informal caregivers caring for persons with dementia living at home.

PubMed

Lethin, Connie; Renom-Guiteras, Anna; Zwakhalen, Sandra; Soto-Martin, Maria; Saks, Kai; Zabalegui, Adelaida; Challis, David J; Nilsson, Christer; Karlsson, Staffan

2017-11-01

To investigate informal caregivers' psychological well-being and predicted increase in psychological well-being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors. A cohort study at baseline and 3 months' follow-up in eight European countries. Caregivers included (n = 1223) were caring for PwDs aged ≥ 65 years at home. Data on caregivers, PwDs and FC were collected using standardized instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed. Factors associated with caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD, few neuropsychiatric symptoms and depressive symptoms for the PwD. At follow-up, caregivers with increased psychological well-being experienced of quality of care (QoC) higher and were more often using dementia specific service. Predicting factors for caregivers' increased psychological well-being were less caregiver burden, positive experience of caregiving, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiatric symptoms. Furthermore, higher QoC predicted increased caregivers' psychological well-being. Informal caregiving for PwDs living at home is a complex task. Our study shows that caregivers' psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neuropsychiatric symptoms that might affect caregivers' psychological well-being, and provide proper care and treatment for caregivers and PwDs.

Day care for dementia patients from a family caregiver's point of view: a questionnaire study on expected quality and predictors of utilisation - Part II.

PubMed

Donath, Carolin; Winkler, Angelika; Graessel, Elmar; Luttenberger, Katharina

2011-04-13

The investigation of the predictive variables for utilisation of day care and the views of family caregivers of dementia patients about quality of day care are the goals of this work. The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in Germany. Participants were 404 family caregivers of dementia patients, of these 128 were users of day care, 269 were non-users and 7 gave no details about utilisation. Qualitative and quantitative data were analysed using qualitative content analysis and binary logistic regression analysis. The assessment of how helpful day care is for the individual care situation and the age of the family caregiver are significant predictors for utilisation of day care. Caregivers most frequently cited a programme of activities suited to the abilities of the dementia patients as quality criterion. In order to reduce the number of those caregivers who think they don't need day care compared with the number who really don't need it, caregivers should be transparently informed of the relevant advantages and quality principles of using day care. According to caregivers' wishes, the organisation of day care centres must include activities suited for dementia patients.

[Rumination and cognitive fusion in dementia family caregivers].

PubMed

Romero-Moreno, Rosa; Márquez-González, María; Losada, Andrés; Fernández-Fernández, Virginia; Nogales-González, Celia

2015-01-01

Rumination has been described as a dysfunctional coping strategy related to emotional distress. Recently, it has been highlighted from the Acceptance and Commitment Therapy therapeutic approach, the negative role that cognitive fusion (the extent to which we are psychologically tangled with and dominated by the form or content of our thoughts) has on the explanation of distress. The aim of this study is to simultaneously analyze the role of rumination and cognitive fusion in the caregiving stress process. The sample of 176 dementia caregivers was divided in four groups, taking into account their levels of rumination and cognitive fusion: HRHF=high rumination+high cognitive fusion; HRLF=high rumination+low cognitive fusion; LRHF= low rumination+high cognitive fusion; and LRLC=low rumination and low cognitive fusion. Caregiver stress factors, frequency of pleasant events, experiential avoidance, coherence and satisfaction with personal values, depression, anxiety and satisfaction with life, were measured. The HRHF group showed higher levels of depression, anxiety, experiential avoidance and lower levels of satisfaction with life, frequency of pleasant events, coherence and satisfaction with personal values, than the other three groups. Considering simultaneously rumination and cognitive fusion may contribute to a better understanding of caregiver coping and distress. Copyright © 2014 SEGG. Published by Elsevier Espana. All rights reserved.

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…

Perceived quality in a dementia unit: patients' caregivers as information providers.

PubMed

López-Picazo, J J; de Dios Cánovas-García, J; Antúnez, C; Marín, J; Antequera, M M; Vivancos, L; Martínez, B; Legaz, A; Navarro, D; Leal, M

2016-10-22

Dementia units (DU) provide comprehensive and specialised care to patients with dementia. However, assessment in these units normally focuses on patient management. The aim of this study was to determine satisfaction of the caregivers of patients managed in a DU and how they rated DU care. We created a self-administered questionnaire which was completed by 236 caregivers visiting the DU in 2015. The questionnaire included 6 dimensions (accessibility, organisation, professionalism, relationship with staff, information, and facilities); data were analysed using problem rates. A total of 53.4% caregivers completed the questionnaire; most were women, patients' spouses, or first-degree relatives. The overall problem rates was 15.0% (95% CI, 13.9-16.1), with sizeable differences between dimensions: from 0.1% (95% CI, 0.0-0.4) for 'relationship with staff' and 'professionalism' to 49.3% (95% CI, 45.4-53.2) for 'information'. Waiting times over 30minutes were perceived as excessive. Information problems were not directly related to patient management. Satisfaction was scored 8.29/10 (median 8; SD 1.45); 77.3% (95% CI, 69.8-74.8) of respondents were highly satisfied. Ninety-nine percent of the caregivers stated that they would recommend the DU. This questionnaire provides interesting data on care quality as perceived by patients' caregivers. Our results have allowed us to identify problems and implement corrective actions. Our questionnaire has proved to be a useful tool for evaluating and improving care quality in DUs. Copyright © 2016 Sociedad Española de Neurología. Publicado por Elsevier España, S.L.U. All rights reserved.

Commitment to personal values and guilt feelings in dementia caregivers.

PubMed

Gallego-Alberto, Laura; Losada, Andrés; Márquez-González, María; Romero-Moreno, Rosa; Vara, Carlos

2017-01-01

Caregivers' commitment to personal values is linked to caregivers' well-being, although the effects of personal values on caregivers' guilt have not been explored to date. The goal of this study is to analyze the relationship between caregivers´ commitment to personal values and guilt feelings. Participants were 179 dementia family caregivers. Face-to-face interviews were carried out to describe sociodemographic variables and assess stressors, caregivers' commitment to personal values and guilt feelings. Commitment to values was conceptualized as two factors (commitment to own values and commitment to family values) and 12 specific individual values (e.g. education, family or caregiving role). Hierarchical regressions were performed controlling for sociodemographic variables and stressors, and introducing the two commitment factors (in a first regression) or the commitment to individual/specific values (in a second regression) as predictors of guilt. In terms of the commitment to values factors, the analyzed regression model explained 21% of the variance of guilt feelings. Only the factor commitment to family values contributed significantly to the model, explaining 7% of variance. With regard to the regression analyzing the contribution of specific values to caregivers' guilt, commitment to the caregiving role and with leisure contributed negatively and significantly to the explanation of caregivers' guilt. Commitment to work contributed positively to guilt feelings. The full model explained 30% of guilt feelings variance. The specific values explained 16% of the variance. Our findings suggest that commitment to personal values is a relevant variable to understand guilt feelings in caregivers.

The lived experience of family caregivers who provided end-of-life care to persons with advanced dementia.

PubMed

Peacock, Shelley; Duggleby, Wendy; Koop, Priscilla

2014-04-01

Dementia is a terminal illness, and family caregivers play a vital role in providing end-of-life care to their relative. The present study begins to address the paucity of research regarding end-of-life caregiving experience with dementia. This study utilized Munhall's methodology for interpretive phenomenology. Seven women and four men were interviewed two to three times within a year of their relative's death; interviews were transcribed verbatim and hermeneutically analyzed. Findings reveal two essential aspects of end-of-life dementia caregiving: being-with and being-there. Further findings are organized according to the existential life worlds. Examination of the life worlds demonstrates that 1) spatiality provided a sense or lack of feeling welcome to provide end-of-life care; 2) temporality was an eternity or time melting away quickly, or the right or wrong time to die; 3) corporeality revealed feelings of exhaustion; and 4) relationality was felt as a closeness to others or in tension-filled relationships. An understanding from bereaved caregivers' perspectives will help healthcare practitioners better support and empathize with family caregivers. Further research is warranted that focuses on other places of death and differences in experience based on gender or relationship to the care receiver.

Depression or Grief? The Experience of Caregivers of People with Dementia.

ERIC Educational Resources Information Center

Walker, Rebecca J.; Pomeroy, Elizabeth C.

1996-01-01

Study of caregivers of people with dementia suggests that the depression so frequently described in the literature may not be as severe or clinically significant as previously thought and may be described as anticipatory grief. Results may assist practitioners in planning and evaluating the effectiveness of clinical interventions. (RJM)

Family caregivers' experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta-ethnographic study.

PubMed

Graneheim, Ulla H; Johansson, Anneli; Lindgren, Britt-Marie

2014-06-01

Many people with dementia are cared for in their homes by family caregivers. As the dementia progresses, admission of the family member to a nursing home becomes inevitable. The aim of this meta-ethnographic study was to describe caregivers' experiences of relinquishing the care of a family member with dementia to a nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo, between the years 1992 and 2012, was performed, and 10 qualitative articles, based on 180 family caregivers' experiences, were included. The family caregivers' described their experiences as a process that went from being responsible for the decision, through living with the decision, adjusting to a new caring role and having changed relationships. They felt unprepared and lonely with these changes. They experienced loss, guilt and shame, but also feelings of relief. Their roles in the nursing home environment were to make sure that the individual needs of the person with dementia were respected and to monitor the quality of care. They wished to maintain their relationship with the person with dementia and to establish meaningful relationships with caring staff. The process of relinquishing care is similar to a crisis process, which starts with a turning point, followed by a coping face and finally the outcome of the process. The adaption to the new situation can be facilitated if the family caregivers are recognised as partners in the care of the person with dementia. The family caregivers' unique knowledge of their relatives' previous life story should be acknowledged in both care planning and daily care. Welcoming family caregivers to regular meetings with staff can contribute to increase the feeling of partnership. Offering staff clinical supervision could be one way of preparing them to deal with the emotional strain reported by family caregivers. © 2013 Nordic College of Caring Science.

Misperceptions of medicaid ineligibility persist among African American caregivers of Alzheimer's dementia care recipients.

PubMed

Kingsberry, Sheridan Quarless; Mindler, Philinda

2012-06-01

African American caregivers of the elderly, including those who care for patients with Alzheimer's and other forms of dementia, remain underserved by Medicaid Assistance Programs. The purpose of this exploratory study was to ascertain to what degree participants in an Alzheimer's Association program that primarily targeted African Americans applied for and received Medicaid assistance, in particular for adult day care, in-home care, and respite care. Secondary data from the Delaware Regional Office of the Alzheimer's Association's 2006 Caregiver Survey of 38 caregivers were reviewed using descriptive, chi-square, and logistic regression analysis. Results indicate that 20 caregivers applied for Medicaid services, 12 of whom were approved. However, 18 caregivers did not apply for Medicaid mainly because they perceived that they would not qualify for benefits, without investigating their eligibility. Clearly more education is needed in African American communities about the eligibility requirements and benefits of Medicaid Assistance Programs because services such as adult day care, in-home care, and respite care have been shown to reduce some of the burden, stress, and strain associated with caring for elderly patients with Alzheimer's dementia. However, a multisystem approach should be used in the outreach and education processes. Finally, the Medicaid application process should be streamlined to make it less cumbersome. More financial and support services are needed by African American caregivers of Alzheimer's care recipients.

Meaning in family caregiving for people with dementia: a narrative study about relationships, values, and motivation, and how day care influences these factors.

PubMed

Tretteteig, Signe; Vatne, Solfrid; Rokstad, Anne Marie Mork

2017-01-01

In addition to care-related burdens, most caregivers of a person with dementia perceive a variety of positive and satisfying experiences, such as feeling needed and useful in their family caregiving role. "Meaning-focused coping" describes both positive and negative emotions in periods with high levels of stress. Day care service may have the potential to increase caregivers' positive experiences and meaning-focused coping, and positively influence interpersonal relationships between those giving care and those receiving care. The aim of this study was to gain knowledge about family caregivers' experiences of meaning in their caring role. Additionally, the influence of day care services on caregivers' experiences and motivation in their caregiving role is explored. A qualitative design based on individual interviews was used. The interviews were analyzed using a narrative method and a case study approach. Family caregivers' roles and coping strategies were related to their relational ties. Caregivers had to make decisions about whether to enhance, maintain, or let go of emotional ties to find a good balance between meeting their own needs and the needs of the person with dementia. Family caregivers reported that day care positively influenced their "relationship-oriented coping" and experience of meaning. Finding meaning in the role of a family caregiver for persons with dementia is closely connected to the caregivers' own values and goals. Finding a balance between attending to their own needs and the needs of the person with dementia is crucial. Day care has the potential to increase family caregivers' motivation to care by supporting their capacity to meet their own needs, cooperate and communicate with the person with dementia, and make competent and autonomous choices, thus increasing their feeling of mastery.

Subjective experiences of family caregivers of patients with dementia as predictive factors of quality of life.

PubMed

Takai, Michiko; Takahashi, Megumi; Iwamitsu, Yumi; Oishi, Satoru; Miyaoka, Hitoshi

2011-06-01

The aim of the present study was to investigate predictive factors of quality of life (QOL) in home caregivers of patients with dementia. A total of 118 home caregivers (48 male, 70 female) were asked to complete the World Health Organization (WHO) Quality of Life 26 (WHO/QOL-26) questionnaire, the Pines Burnout Measure (BM), and the Beck Depression Inventory, second edition (BDI-II). Patient demographics and clinical data regarding cognitive impairment, neuropsychiatric symptoms, and dementia severity were obtained from medical records. Spearman rank correlation coefficients revealed that caregiver QOL was significantly correlated with patients' neuropsychiatric symptoms (r=-0.19; P < 0.05), as well as depressive symptoms (r=-0.59, P < 0.01) and burnout (r=-0.59, P < 0.01) in caregivers. Stepwise multiple regression analysis revealed that depressive symptoms in caregivers was the strongest predictor for caregiver QOL (R(2) = 0.37, P < 0.001) and that caregiver QOL was best predicted by the combination of depressive symptoms, burnout, and the cognitive impairment of patients (R(2) = 0.46, P < 0.05). The results of the present study demonstrate that subjective experiences of caregivers are more strongly correlated with caregiver QOL than patient-related variables and are thus powerful determinants of caregiver QOL. These findings suggest that caregiver intervention, which aims to increase QOL, may benefit from the incorporation of strategies to reduce depressive symptoms and burnout. © 2011 The Authors; Psychogeriatrics © 2011 Japanese Psychogeriatric Society.

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…

Transition from the spouse dementia caregiver role: A change for the better?

PubMed

Brown, Lynsey J; Bond, Malcolm J

2016-07-01

One in 15 Australians over 65 experience dementia, and are commonly supported by spouses. Evidence demonstrates declining wellbeing for these caregivers as their role continues. There are indications of improvement once caregivers transition out of the role (recovery) but alternate suggestions that caregiving stress may be too damaging to be appeased (wear and tear). It seems plausible that reason for transition (care recipient's move into residential care or death) will affect caregivers' outcomes. A synthetic cohort method compared caregivers' stress and wellbeing prior to, and one and two years post-transition. There was evidence of wear and tear for physical wellbeing but recovery for psychological wellbeing over time; with little difference based on reason for transition. Caregiver outcomes seem to be a function of the action rather than the reason for transition, but factors such as age must be considered when designing methods to support post-transition wellbeing. © The Author(s) 2014.

Self-management by family caregivers to manage changes in the behavior and mood of their relative with dementia: an online focus group study.

PubMed

Huis In Het Veld, Judith; Verkaik, Renate; van Meijel, Berno; Verkade, Paul-Jeroen; Werkman, Wendy; Hertogh, Cees; Francke, Anneke

2016-05-03

Self-management is important for family caregivers of people with dementia, especially when they face changes in their relative's behavior and mood, such as depression, apathy, anxiety, agitation and aggression. The aim of this study is to give insight into why these changes in behavior and mood are stressful for family caregivers, what self-management strategies family caregivers use when managing these changes and the stress they experience. A qualitative study was conducted using four online focus groups with 32 family caregivers of people with dementia living in the Netherlands. Transcripts of the focus group discussions were analyzed using principles of thematic analysis. Managing changes in the behavior and mood of their relative with dementia is stressful for family caregivers because of constantly having to switch, continuously having to keep the person with dementia occupied and distracted, the fact that others see a different side to the relative, and the fact that caregivers know what to do, but are often not able to put this into practice. Caregivers use calming down and stimulation as self-management strategies for influencing the changes in the behavior and mood of their relative. Furthermore, caregivers describe three self-management strategies that let them manage their own stress and keep up the care for their loved ones: looking for distractions, getting rest, and discussing their feelings and experiences. Behavior and mood changes of a person with dementia are stressful for family caregivers. They use several self-management strategies to positively affect the mood and behavior changes, and also to manage their own stress.

[Effects of Family Support Programs for Caregivers of People with Dementia - Caregiving Burden, Depression, and Stress: Systematic Review and Meta-analysis].

PubMed

Park, Seyeon; Park, Myonghwa

2015-10-01

The objective of this systematic review was to assess the effects of family support programs on caregiving burden, depression, and stress in family caregivers of people with dementia. A literature search was conducted of electronic databases to identify randomized controlled studies with family support programs done between 2000 and 2014. Studies published in English and/or Korean were included for the analysis with search strategies adapted from the Cochrane Dementia and Cognitive Improvement Group. Studies were rated for quality assessment by two independent reviewers using the appraisal checklist developed by Cochrane Reviews and Dissemination. Of 8,334 articles identified in the literature search, full texts of 76 articles that met the inclusion criteria were reviewed and 38 were found to include relevant outcomes. Results from selected studies were pooled in statistical meta-analysis using Review Manager Software and heterogeneity between combined studies was assessed using the Chi-square test. Meta-analysis showed that the effect sizes of family caregiver support programs were small to medium for categories of caregiving burden (Hedge's g=-0.17, 95% CI=-0.30~-0.04), depression (Hedge's g=-0.30, 95% CI=-0.40~-0.20), and stress (Hedge's g=-0.39, 95% CI=-0.52~-0.25). The review results indicate that a support programs can assist family caregivers in reducing their psycho-emotional distress.

Development of a nursing care problems coping scale for male caregivers for people with dementia living at home.

PubMed

Nishio, Midori; Ono, Mitsu

2015-01-01

The number of male caregivers has increased, but male caregivers face several problems that reduce their quality of life and psychological condition. This study focused on the coping problems of men who care for people with dementia at home. It aimed to develop a coping scale for male caregivers so that they can continue caring for people with dementia at home and improve their own quality of life. The study also aimed to verify the reliability and validity of the scale. The subjects were 759 men who care for people with dementia at home. The Care Problems Coping Scale consists of 21 questions based on elements of questions extracted from a pilot study. Additionally, subjects completed three self-administered questionnaires: the Japanese version of the Zarit Caregiver Burden Scale, the Depressive Symptoms and the Self-esteem Emotional Scale, and Rosenberg Self-Esteem Scale. There were 274 valid responses (36.1% response rate). Regarding the answer distribution, each average value of the 21 items ranged from 1.56 to 2.68. The median answer distribution of the 21 items was 39 (SD = 6.6). Five items had a ceiling effect, and two items had a floor effect. The scale stability was about 50%, and Cronbach's α was 0.49. There were significant correlations between the Care Problems Coping Scale and total scores of the Japanese version of the Zarit Caregiver Burden Scale, the Depressive Symptoms and Self-esteem Emotional Scale, and the Rosenberg Self-Esteem Scale. The answers provided on the Care Problems Coping Scale questionnaire indicated that male caregivers experience care problems. In terms of validity, there were significant correlations between the external questionnaires and 19 of the 21 items in this scale. This scale can therefore be used to measure problems with coping for male caregivers who care for people with dementia at home.

Systematic care for caregivers of people with dementia in the ambulatory mental health service: designing a multicentre, cluster, randomized, controlled trial

PubMed Central

Spijker, Anouk; Verhey, Frans; Graff, Maud; Grol, Richard; Adang, Eddy; Wollersheim, Hub; Vernooij-Dassen, Myrra

2009-01-01

Background Care for people with dementia and their informal caregivers is a challenging aim in healthcare. There is an urgent need for cost-effective support programs that prevent informal caregivers of people with dementia from becoming overburdened, which might result in a delay or decrease of patient institutionalization. For this reason, we have developed the Systematic Care Program for Dementia (SCPD). The SCPD consists of an assessment of caregiver's sense of competence and suggestions on how to deal with competence deficiencies. The efficiency of the SCPD will be evaluated in our study. Methods and design In our ongoing, cluster, randomized, single-blind, controlled trial, the participants in six mental health services in four regions of the Netherlands have been randomized per service. Professionals of the ambulatory mental health services (psychologists and social psychiatric nurses) have been randomly allocated to either the intervention group or the control group. The study population consists of community-dwelling people with dementia and their informal caregivers (patient-caregiver dyads) coming into the health service. The dyads have been clustered to the professionals. The primary outcome measure is the patient's admission to a nursing home or home for the elderly at 12 months of follow-up. This measure is the most important variable for estimating cost differences between the intervention group and the control group. The secondary outcome measure is the quality of the patient's and caregiver's lives. Discussion A novelty in the SCPD is the pro-active and systematic approach. The focus on the caregiver's sense of competence is relevant to economical healthcare, since this sense of competence is an important determinant of delay of institutionalization of people with dementia. The SCPD might be able to facilitate this with a relatively small cost investment for caregivers' support, which could result in a major decrease in costs in the management of

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…

Hope and connection: the experience of family caregivers of persons with dementia living in a long term care facility

PubMed Central

2013-01-01

Background Hope is a psychosocial resource that is essential for the psychological, spiritual, and physical well-being of family members caring for persons with dementia. A significant positive relationship has been found between hope and well-being in family caregivers of persons with dementia living in the community. However, the hope experience of family caregivers of persons living with dementia in long-term care (LTC) facilities has not been explored. The purpose of this study was to explore the hope experience of family caregivers of persons with dementia living in a LTC facility. Methods Twenty-three open-ended face to face interviews were conducted with 13 family caregivers of residents with dementia in a LTC facility. Family was broadly defined to include relatives and friends. Seven of these participants also reflected on their hope in diaries over a two week period. Interview transcripts and journal texts were analyzed using Thorne’s interpretive description approach. Results The over-arching theme was “hope and connection”. Participants lost hope and felt despair when they perceived they were unable to connect with their family member in the LTC facility. They regained their hope when a connection could be made. Several sub-themes were identified including: accepting where we are, living life in the moment, believing in something, standing together, and balancing dual worlds. Conclusions Hope was important and essential for family caregivers of persons with dementia residing in a LTC facility. The overarching theme of “hope and connection” underscores the importance of maintaining relationships and connection between family members and the person in LTC. Given the paucity of hope research conducted within this population, the study findings provide a foundation for future research. PMID:24138640

Effectiveness and cost-effectiveness of an internet intervention for family caregivers of people with dementia: design of a randomized controlled trial.

PubMed

Blom, Marco M; Bosmans, Judith E; Cuijpers, Pim; Zarit, Steve H; Pot, Anne Margriet

2013-01-10

The number of people with dementia is rising rapidly as a consequence of the greying of the world population. There is an urgent need to develop cost effective approaches that meet the needs of people with dementia and their family caregivers. Depression, feelings of burden and caregiver stress are common and serious health problems in these family caregivers. Different kinds of interventions are developed to prevent or reduce the negative psychological consequences of caregiving. The use of internet interventions is still very limited, although they may be a cost effective way to support family caregivers in an earlier stage and diminish their psychological distress in the short and longer run. A pragmatic randomized controlled trial is designed to evaluate the effectiveness and cost-effectiveness of 'Mastery over Dementia', an internet intervention for caregivers of people with dementia. The intervention aims at prevention and decrease of psychological distress, in particular depressive symptoms. The experimental condition consists of an internet course with 8 sessions and a booster session over a maximum period of 6 months guided by a psychologist. Caregivers in the comparison condition receive a minimal intervention. In addition to a pre and post measurement, an intermediate measurement will be conducted. In addition, there will be two follow-up measurements 3 and 6 months after post-treatment in the experimental group only. To study the effectiveness of the intervention, depressive symptoms are used as the primary outcome, whereas symptoms of anxiety, role overload and caregiver perceived stress are used as secondary outcomes. To study which caregivers profit most of the internet intervention, several variables that may modify the impact of the intervention are taken into account. Regarding the cost-effectiveness, an economic evaluation will be conducted from a societal perspective. This study will provide evidence about the effectiveness and cost

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

Advancing Care for Family Caregivers of persons with dementia through caregiver and community partnerships.

PubMed

White, Carole L; Overbaugh, Kristen J; Pickering, Carolyn E Z; Piernik-Yoder, Bridgett; James, Debbie; Patel, Darpan I; Puga, Frank; Ford, Lark; Cleveland, James

2018-01-01

There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development. We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis. We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future. Incorporating caregiver and

Targeting and managing behavioral symptoms in individuals with dementia: a randomized trial of a nonpharmacological intervention.

PubMed

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

2010-08-01

To test the effects of an intervention that helps families manage distressing behaviors in family members with dementia. Two-group randomized trial. In home. Two hundred seventy-two caregivers and people with dementia. Up to 11 home and telephone contacts over 16 weeks by health professionals who identified potential triggers of patient behaviors, including communication and environmental factors and patient undiagnosed medical conditions (by obtaining blood and urine samples) and trained caregivers in strategies to modify triggers and reduce their upset. Between 16 and 24 weeks, three telephone contacts reinforced strategy use. Primary outcomes were frequency of targeted problem behavior and caregiver upset with and confidence managing it at 16 weeks. Secondary outcomes were 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. At 16 weeks, 67.5% of intervention caregivers reported improvement in targeted problem behavior, compared with 45.8% of caregivers in a no-treatment control group (P=.002), and reduced upset with (P=.03) and enhanced confidence managing (P=.01) the behavior. Additionally, intervention caregivers reported less upset with all problem behaviors (P=.001), less negative communication (P=.02), less burden (P=.05), and better well-being (P=.001) than controls. Fewer intervention caregivers had depressive symptoms (53.0%) than control group caregivers (67.8%, P=.02). Similar caregiver outcomes occurred at 24 weeks. Intervention caregivers perceived more study benefits (P<.05), including ability to keep family members home, than controls. Blood and urine samples of intervention patients with dementia showed that 40 (34.1%) had undiagnosed illnesses requiring physician follow-up. Targeting behaviors upsetting to caregivers and modifying potential triggers improves symptomatology in people with dementia and caregiver well-being and

Falls and Hospitalizations Among Persons With Dementia and Associated Caregiver Emotional Difficulties.

PubMed

Leggett, Amanda N; Polenick, Courtney A; Maust, Donovan T; Kales, Helen C

2018-03-19

Falls and hospitalizations are adverse health events commonly experienced by persons with dementia (PWDs). These events often require urgent care from a family caregiver and may increase caregiver stress. We examine falls and hospitalizations among PWDs as predictors of caregivers' reported care-related emotional difficulty, in addition to care-related stressors. Cross-sectional telephone survey of 652 informal caregivers for PWDs. A multinomial logistic regression examined falls (last month) and hospitalizations (prior year) experienced by PWDs as predictors of caregivers' care-related emotional difficulty, accounting for demographic characteristics and primary and secondary caregiving stressors. Over 20% of caregivers reported high levels of care-related emotional difficulty. Controlling for demographic characteristics and primary and secondary caregiving stressors, the PWD's prior month fall was significantly associated with greater care-related emotional difficulty; the PWD's hospitalizations were not associated with care-related emotional difficulty. Approximately 30% of PWDs had experienced a past year hospitalization and prior month fall, and one in five caregivers reported high emotional difficulty related to care. Although secondary strains and resources of caregiving were strong predictors of care-related emotional difficulty, PWDs' falls represent a significant stressor that increases odds of caregiver emotional difficulty over and above other strains. Consequently, a fall experienced by a PWD may represent a key time for clinicians to assess caregiver well-being.

Burden among Family Caregivers of Dementia in the Oldest-Old: An Exploratory Study.

PubMed

Win, Khin Khin; Chong, Mei Sian; Ali, Noorhazlina; Chan, Mark; Lim, Wee Shiong

2017-01-01

With >85 years, the fastest growing age segment in developed countries, dementia in the oldest-old is projected to increase exponentially. Being older, caregivers of dementia in oldest-old (CDOO) may experience unique challenges compared with younger-age groups. Thus, we aim to explore demographic characteristics and burden pattern among CDOO. We studied 458 family caregiver-patient dyads attending an outpatient memory clinic. We classified patients into three age-groups: <75, 75-84, and ≥85 years. We measured caregiver burden using the Zarit Burden Interview (ZBI) 4-factor structure described by Cheah et al. (1). We compared care recipient characteristics, caregiver demographics, and ZBI total/factors scores between the three age-groups, and performed 2-way analysis of variance (ANOVA) to ascertain the effect of age-group by disease severity interaction. Oldest-old care recipients were more impaired in cognitive function and instrumental ADL; there was no difference in behavior and basic ADL. Compared with the other two age-groups, CDOO were older (mean age: 50.4 vs 55.5 vs 56.8 years, P  < 0.01), and overwhelmingly adult children (85.9%) as opposed to spouses (5.3%). CDOO also had higher ZBI total score, role strain, and personal strain (all P  < 0.05). However, there was no difference in worry about performance scores. 2-way ANOVA did not reveal significant age-group by disease severity interaction for ZBI total and factor scores, although distinctive differences were seen between role/personal strain with worry about performance in mild cognitive impairment and very mild dementia. Our study highlighted that CDOO were mainly older adult children who experienced significant role and personal strain independent of disease severity while caring for their family member with more impaired cognitive and physical function. These results pave the way for targeted interventions to address the unique burden faced by this rapidly growing group of caregivers.

The effects of incident and persistent behavioral problems on change in caregiver burden and nursing home admission of persons with dementia.

PubMed

Gaugler, Joseph E; Wall, Melanie M; Kane, Robert L; Menk, Jeremiah S; Sarsour, Khaled; Johnston, Joseph A; Beusching, Don; Newcomer, Robert

2010-10-01

The individual contributions of behavior problems to key and related outcomes in dementia, such as nursing home admission (NHA) or caregiver burden, remain unclear. This study sought to determine the ramifications of temporal change in individual behavior problems when accounting for increases in caregiver burden and time to NHA. Although burden is sometimes conceptualized as an antecedent to NHA, it has also emerged as a relevant outcome in dementia caregiving research. A sample of 4545 dementia caregivers who participated in the Medicare Alzheimer disease Demonstration Evaluation was selected for this secondary analysis. Various patterns of change in individual behavior problems were considered as predictors of increases in caregiver burden and time to NHA over a 3-year period via mixed effects and Cox proportional hazards models, respectively. Caregivers who did not indicate a care recipient's dangerous behavior initially but did so subsequently (ie, an "incident" behavior problem) were more likely to experience increases in burden (P < 0.0026). Alternatively, the persistent occurrence of behavior disturbances (particularly memory problems) emerged as the strongest predictors of time to NHA. The findings of this study suggest the benefit of examining temporal patterns of individual behavioral disturbances, and that incident and persistent problems account for different dementia outcomes over time. Considering the temporal ramifications and potency of specific behavior problems can facilitate the targeted and timely delivery of effective clinical interventions.

Daily Fluctuation in Negative Affect for Family Caregivers of Individuals With Dementia

PubMed Central

Liu, Yin; Kim, Kyungmin; Almeida, David M.; Zarit, Steven H.

2017-01-01

Objective The study examined associations of intrinsic fluctuation in daily negative affect (i.e., depression and anger) with adult day service (ADS) use, daily experiences, and other caregiving characteristics. Methods This was an 8-day diary of 173 family caregivers of individuals with dementia. Multilevel models with common within-person variance were fit first to show average associations between daily stressors and mean level of daily affect. Then multilevel models with heterogeneous within-person variance were fit to test the hypotheses on associations between ADS use, daily experiences, and intrinsic fluctuation in daily affect. Results The study showed that, when the sum of ADS days was greater than average, there was a stabilizing effect of ADS use on caregivers’ within-person fluctuation in negative affect. Moreover, fewer daily stressors and greater-than-average daily care-related stressors, more positive events, not being a spouse, greater-than-average duration of caregiving, and less-than-average dependency of individuals with dementia on activities of daily living were associated with less fluctuation. Better sleep quality was associated with less intrinsic fluctuation in anger; and younger age and more years of education were associated with less intrinsic fluctuation in daily depression. Conclusions Because emotional stability has been argued as an aspect of emotional well-being in the general populations, intrinsic fluctuation of emotional experience was suggested as an outcome of evidence-based interventions for family caregivers. PMID:25365414

Purpose in Life Among Family Care Partners Managing Dementia: Links to Caregiving Gains.

PubMed

Polenick, Courtney A; Sherman, Carey Wexler; Birditt, Kira S; Zarit, Steven H; Kales, Helen C

2018-06-04

Purpose in life is associated with better health and has been found to minimize caregiving stress. Greater purpose may also promote caregiving gains (i.e., rewards or uplifts from providing care), yet the implications of purpose for positive aspects of the care role are largely unknown. The present study determined how perceptions of purpose in life among persons with dementia (PWDs) and their family caregivers are linked to caregiving gains. This cross-sectional study examined 153 co-resident family caregivers drawn from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Linear regressions were estimated to evaluate associations between caregivers' and PWDs' reports of their own purpose in life and caregivers' perceived caregiving gains, along with whether these associations vary by caregiver gender. Models controlled for caregivers' sociodemographic characteristics, relationship to the PWD, care tasks, role overload, negative caregiving relationship quality, and both care partners' chronic health conditions. Caregivers' higher purpose in life was significantly linked to greater caregiving gains. Beyond this association, PWDs' higher purpose in life was significantly associated with greater caregiving gains for women but not for men. Purpose in life is a psychological resource that contributes to positive caregiving outcomes. Interventions to improve caregiver well-being could benefit from strategies that strengthen and maintain feelings of purpose among caregivers and PWDs.

Correlates of Caregiver Participation in a Brief, Community-Based Dementia Care Management Program.

PubMed

Mavandadi, Shahrzad; Patel, Samir; Benson, Amy; DiFilippo, Suzanne; Streim, Joel; Oslin, David

2017-11-10

The evidence base for dementia care management interventions for informal caregivers (CGs) is strong, yet enrollment and sustained engagement in academic and community-based research trials is low. This study sought to examine rates and correlates of participation in a community-based, telephone-delivered dementia care management program designed to address logistic and practical barriers to participation in CG trials and services. Participants included 290 CGs of older, community-dwelling, low-income care recipients (CRs) who met criteria for enrollment in a collaborative dementia care management program that provides assessment, psychosocial support and education, and connection to community resources via telephone. Cross-sectional analyses examined the association between CG-related (e.g., financial status, relationship to CR, caregiving burden) and CR-related (e.g., functional limitations, symptom severity) factors and CG enrollment and engagement. The majority of CGs were non-Hispanic White, female, financially stable, and adult children of the CRs. Over half of CGs lived with the CR and provided 20 or more hours of care per week. Roughly half of CGs refused care management services. Adjusted logistic regression models revealed that perceived caregiving burden and financial status were related to initial enrollment and engagement in services once enrolled, respectively. A significant proportion of CGs refuse free, convenient, evidence-based dementia care management services, underscoring the need for further examination of correlates of program acceptance. Nonetheless, community-based programs that address barriers may improve enrollment and engagement rates among CGs, including those who are especially vulnerable to negative CG and CR outcomes. Published by Oxford University Press on behalf of The Gerontological Society of America 2016. This work is written by (a) US Government employee(s) and is in the public domain in the US.

Behavioral and caregiver reaction of dementia as measured by the neuropsychiatric inventory in Nigerian community residents.

PubMed

Baiyewu, Olusegun; Smith-Gamble, Valerie; Akinbiyi, Akinsola; Lane, Kathleen A; Hall, Kathleen S; Ogunniyi, Adesola; Gureje, Oyewusi; Hendrie, Hugh C

2003-12-01

The Neuropsychiatric Inventory (NPI) has been used to assess behavioral symptoms of dementia in the United States, Taiwan, Japan, and Italy. This report evaluates the use of the NPI to assess behavioral symptoms of dementia in a population of Yoruba, Nigerians aged 65 years and older who are subjects in the Indianapolis-Ibadan Dementia Project. In this study, the NPI, Blessed Dementia Scale, and Mini-Mental State Examination (MMSE) were used to assess Nigerian subjects with dementia. For this study the NPI was translated, back translated, and harmonized into Yoruba. The harmonized version of the NPI showed good interrater and test-retest reliability. The Cronbach alpha on 40 subjects was .80 for total severity score, .73 for frequency, and .73 for distress, indicating good internal consistency. The MMSE correlated with the NPI total score and severity scores of delusion, hallucination, and agitation, whereas the Blessed correlated with the NPI total score and severity scores of depression, anxiety, and nighttime behavior. The NPI was found to be a reliable tool to assess behavioral symptoms and caregiver distress of dementia in the Yoruba. Behavioral disturbances were as common in the Yoruba patients with dementia as in studies in other countries that have used the NPI, but the pattern of behavioral disturbances and caregiver response varied among the countries.

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. Copyright © 2013 John Wiley & Sons, Ltd.

Visual Arts Education improves self-esteem for persons with dementia and reduces caregiver burden: A randomized controlled trial.

PubMed

Richards, Allan G; Tietyen, Ann C; Jicha, Gregory A; Bardach, Shoshana H; Schmitt, Frederick A; Fardo, David W; Kryscio, Richard J; Abner, Erin L

2018-01-01

A Visual Arts Education program was tested among 26 pairs of persons with dementia and their caregivers. Pairs were randomized to Visual Arts Education or control groups, and each group met once per week for two months (8 weeks) to participate in activities with a trained arts instructor. Groups were assessed at baseline, two months, and six months. The Visual Arts Education group received instruction and produced a different type of artistic work each week. The pedagogical strategy was designed so that each activity was increasingly novel, challenging, and complex. The control group viewed slide shows, participated in discussions about art, and made paintings. At the six-month follow-up, significant improvements in caregiver burden and self-esteem for the persons with dementia were found in the Visual Arts Education group. The Visual Arts Education pedagogical approach shows the potential for effectiveness for improving quality of life for persons with dementia and their caregivers.

Predictors of adherence to a skill-building intervention in dementia caregivers.

PubMed

Chee, Yeon Kyung; Gitlin, Laura N; Dennis, Marie P; Hauck, Walter W

2007-06-01

Treatment adherence is a widely recognized problem in health services but understudied in caregiver intervention research. This study examines caregiver sociodemographic and psychological characteristics, patient illness severity, and treatment implementation factors as predictors of caregiver adherence to a skills training intervention to help families manage dementia care problems at home. The sample consisted of 105 caregivers randomized to the Home Environmental Skill-Building Program at the Philadelphia site of the National Institutes of Health (NIH) Resources for Enhancing Alzheimer's Caregiver Health (REACH I). The intervention, implemented by occupational therapists, consisted of education, problem solving, communication, environmental and task simplification techniques, and home modifications. Adherence was measured by a proportion score representing the percentage of strategies used by participants compared to the total number of strategies prescribed during intervention (Strategy Use). Regression analysis with intraclass correlation adjustment for interventionist effects revealed that caregivers with better physical health (p <.001), greater treatment exposure (p <.001), more problem areas addressed (p =.012), and for whom more active therapeutic techniques (role play) were used (p =.004) demonstrated greater adherence. Other caregiver characteristics, patient cognitive impairment, and troublesome behaviors were not significantly related to caregiver adherence. Modifiable caregiver and treatment implementation factors, including active engagement of caregivers, were associated with adherence, whereas patient characteristics were not. Caregivers with poor health may be at risk for not benefiting from intervention, suggesting that efforts, including instruction in preventive care and allocating time to attend to their own health care needs, be directed towards improving their health.

Confirmatory factor analysis of a brief version of the Zarit Burden Interview in Black and White dementia caregivers.

PubMed

Flynn Longmire, Crystal V; Knight, Bob G

2011-08-01

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 equally across various groups. Therefore, this study considers the psychometric properties of a brief version of the ZBI with particular attention to its factor structure and metric equivalence across two racial groups. Distribution, reliability, and confirmatory factor analyses were performed with a 14-item three-factor ZBI factor model in a sample of 175 Black and 225 White caregivers of family members with dementia. The 14 ZBI items were reliable and fairly normally distributed for both groups. The three-factor model fits the data and was invariant across the Black and White caregivers for number of factors, factor loadings, and factor covariances. These findings contribute to the literature on the factor structure of the ZBI and provide new data on the invariance of the ZBI across two racial/ethnic groups of caregivers. This study provides support for the validity of findings that compare the burden scores of Black and White caregivers in studies utilizing the ZBI. The 14-item version also offers a more parsimonious way to measure burden in clinical settings, potentially increasing screening opportunities when caregiver contact time is limited.

The Four-Factor Model of Depressive Symptoms in Dementia Caregivers: A Structural Equation Model of Ethnic Differences

PubMed Central

Roth, David L.; Ackerman, Michelle L.; Okonkwo, Ozioma C.; Burgio, Louis D.

2008-01-01

Previous studies have suggested that 4 latent constructs (depressed affect, well-being, interpersonal problems, somatic symptoms) underlie the item responses on the Center for Epidemiological Studies Depression (CES-D) Scale. This instrument has been widely used in dementia caregiving research, but the fit of this multifactor model and the explanatory contributions of multifactor models have not been sufficiently examined for caregiving samples. The authors subjected CES-D data (N = 1,183) from the initial Resources for Enhancing Alzheimer’s Caregiver Health Study to confirmatory factor analysis methods and found that the 4-factor model provided excellent fit to the observed data. Invariance analyses suggested only minimal item-loading differences across race subgroups and supported the validity of race comparisons on the latent factors. Significant race differences were found on 3 of the 4 latent factors both before and after controlling for demographic covariates. African Americans reported less depressed affect and better well-being than White caregivers, who reported better well-being and fewer interpersonal problems than Hispanic caregivers. These findings clarify and extend previous studies of race differences in depression among diverse samples of dementia caregivers. PMID:18808246

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…

Study protocol Implementation of the Veder contact method (VCM) in daily nursing home care for people with dementia: an evaluation based on the RE-AIM framework.

PubMed

Boersma, Petra; Van Weert, Julia C M; van Meijel, Berno; van de Ven, Peter M; Dröes, Rose-Marie

2017-07-01

People with dementia in nursing homes benefit from person-centred care methods. Studies examining the effect of these methods often fail to report about the implementation of these methods. The present study aims to describe the implementation of the Veder contact method (VCM) in daily nursing home care. A process analysis will be conducted based on qualitative data from focus groups with caregivers and interviews with key figures. To investigate whether the implementation of VCM is reflected in the attitude and behaviour of caregivers and in the behaviour and quality of life of people with dementia, a controlled observational cohort study will be conducted. Six nursing home wards implementing VCM will be compared with six control wards providing Care As Usual. Quantitative data from caregivers and residents will be collected before (T0), and 9-12 months after the implementation (T1). Qualitative analysis and multilevel analyses will be carried out on the collected data and structured based on the constructs of the RE-AIM framework (Reach, Effectiveness, Adoption, Implementation, Maintenance). By using the RE-AIM framework this study introduces a structured and comprehensive way of investigating the implementation process and implementation effectiveness of person-centred care methods in daily dementia care.

Dealing with daily challenges in dementia (deal-id study): effectiveness of the experience sampling method intervention 'Partner in Sight' for spousal caregivers of people with dementia: design of a randomized controlled trial.

PubMed

van Knippenberg, Rosalia J M; de Vugt, Marjolein E; Ponds, Rudolf W; Myin-Germeys, Inez; Verhey, Frans R J

2016-05-11

There is an urgent need for psychosocial interventions that effectively support dementia caregivers in daily life. The Experience Sampling Methodology (ESM) offers the possibility to provide a more dynamic view of caregiver functioning. ESM-derived feedback may help to redirect caregivers' behavior towards situations that elicit positive emotions and to increase their feelings of competence in the caretaking process. This paper presents the design of a study that evaluates the process characteristics and effects of the ESM-based intervention 'Partner in Sight'. A randomized controlled trial with 90 spousal caregivers of people with dementia will be conducted. Participants will be randomly assigned to the experimental (6-week ESM intervention including feedback), pseudo-experimental (6-week ESM intervention without feedback), or control group (care as usual). Assessments will be performed pre- and post-intervention and at 2-, and 6-month follow-up. Main outcomes will be sense of competence, perceived control, momentary positive affect, and psychological complaints (depressive symptoms, perceived stress, anxiety, momentary negative affect). In addition to the effect evaluation, a process and economic evaluation will be conducted to investigate the credibility and generalizability of the intervention, and its cost-effectiveness. The potential effects of the ESM intervention may help caregivers to endure their care responsibilities and prevent them from becoming overburdened. This is the first ESM intervention for caregivers of people with dementia. The results of this study, therefore, provide a valuable contribution to the growing knowledge on m-health interventions for dementia caregivers. Dutch Trial Register NTR4847 ; date registered Oct 9, 2014.

Differences in social support of caregivers living with partners suffering from COPD or dementia.

PubMed

Nordtug, Bente; Krokstad, Steinar; Sletvold, Olav; Holen, Are

2013-05-01

Future patients with chronic diseases will probably remain longer in their homes. To enable family caregivers to meet these challenges, public services and informal support are essential. This study compared social support between home-dwelling caregivers of partners with chronic obstructive pulmonary disease or dementia. A cross-sectional study of 206 caregivers. Professional aid was quantified by the services utilised. Informal support from family and friends was rated by the number of helping persons and the degree of social withdrawal. The Medical Outcomes Study Social Support Survey Form captured perceived social support. For both diseases, increased severity correlated with more utilisation of professional aid. The chronic obstructive pulmonary disease group perceived more social support, reported less social withdrawal and higher numbers of helping persons. Ill partners' aggressive behaviour reduced perceived support. The use of professional aid was negatively associated with the ill partner's level of self-care, and positively correlated with social withdrawal. Professional aid was more utilised by the dementia group and by men. Differences in caregivers' needs for social support were related to their partner's disease. Counteracting social withdrawal, considering type of illness and gender differences may increase the quality of informal care. © 2011 Blackwell Publishing Ltd.

Communicating with patients who have advanced dementia: training nurse aide students.

PubMed

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' perceptions of dementia and their ability to care for patients with dementia. The results indicated the training was effective regarding nurse aides' understanding of residual cognitive abilities and need for meaningful contact among patients with advanced dementia; however, the training was not successful in terms of nurse aides' comfort level or perceived skills in working with this population of patients. The findings suggest a need to transform how caregivers are trained in communication techniques. Incorporating this training into nurse aide education has the potential to increase quality of life for people with dementia.

Do spouse caregivers of persons with early- and late-onset dementia cope differently? A comparative study.

PubMed

Wawrziczny, Emilie; Pasquier, Florence; Ducharme, Francine; Kergoat, Marie-Jeanne; Antoine, Pascal

To explore spouse caregivers' means of coping with the disease and compare them based on the age of onset of the disease in order to adapt support programs. Interviews were conducted with 38 spouse caregivers of persons with late-onset dementia (PLOD) and 40 spouse caregivers of persons with early onset dementia (PEOD). The first step in the analysis was qualitative, using QSR N'Vivo 10 to identify the coping strategies. The second step was quantitative, comparing the coping strategies based on the age of onset of the disease with a χ2 test. An inventory of 26 strategies used by all caregivers was established and consolidated into two groups: acceptance strategies and avoidance strategies. The statistical results show that some strategies were used by the two groups of caregivers. However, when differences emerged, the "Planning" strategy was used by spouse caregivers of PEOD, whereas the "Re-arranging", "Humor" and "Getting away from the entourage" strategies were used by spouse caregivers of PLOD. It would be interesting to develop a support program with a common framework and specific modules depending on the age of onset of the disease. Common modules would permit developing and strengthening acceptance strategies. Specific modules for caregivers of PEOD would guide them in the acquisition of more adaptability and flexibility in the assistance provided to the PWD, which can sometimes be too rigid and controlled. Specific modules for caregivers of PLOD would help them to develop the ability to request help and identify the intervention limits of the entourage. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

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

PubMed

Liew, Tau Ming

2016-07-01

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). 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. 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. 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. © 2015 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons, Ltd.

Testing the effectivity of the mixed virtual reality training Into D'mentia for informal caregivers of people with dementia: protocol for a longitudinal, quasi-experimental study.

PubMed

Jütten, Linda Helena; Mark, Ruth Elaine; Maria Janssen, Ben Wilhelmus Jacobus; Rietsema, Jan; Dröes, Rose-Marie; Sitskoorn, Margriet Maria

2017-08-21

Informal caregivers for people with dementia (hereafter: caregivers) often feel (over)burdened by the care for a loved one with dementia, and this can have various deleterious effects on both caregivers and patients. Support for caregivers is urgently needed, and for this reason, a dementia simulator (Into D'mentia) was developed in which caregivers experience what it is like to have dementia. The simulator attempts to heighten caregivers' empathy and understanding for the patient and, in turn, diminish their own caregiver burden. The current study evaluates whether the simulator is effective on a number of outcomes. A longitudinal, quasi-experimental study is ongoing in the Netherlands. We aim to recruit 142 caregivers in total divided over two groups: 71 caregivers in the intervention group and 71 caregivers in the control group. All participants will complete interviews and questionnaires at four time points: at baseline, 1 week, 2.5 months and 15 months after the training. The primary outcomes include empathy, caregiver burden, caregiver's sense of competence, social reliance, anxiety, depression and caregivers' subjective and objective health. This study is being carried out in agreement with the Declaration of Helsinki, and the protocol has been approved by the local ethics committees. This study is registered with The Netherlands National Trial Register (NNTR5856). © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Measuring the expressed emotion in Chinese family caregivers of persons with dementia: Validation of a Chinese version of the Family Attitude Scale.

PubMed

Yu, Doris S F; Kwok, Timothy; Choy, Jacky; Kavanagh, David J

2016-03-01

Expressed emotion (EE) captures the affective quality of the relationship between family caregivers and their care recipients and is known to increase the risk of poor health outcomes for caregiving dyads. Little is known about expressed emotion in the context of caregiving for persons with dementia, especially in non-Western cultures. The Family Attitude Scale (FAS) is a psychometrically sound self-reporting measure for EE. Its use in the examination of caregiving for patients with dementia has not yet been explored. This study was performed to examine the psychometric properties of the Chinese version of the FAS (FAS-C) in Chinese caregivers of relatives with dementia, and its validity in predicting severe depressive symptoms among the caregivers. The FAS was translated into Chinese using Brislin's model. Two expert panels evaluated the semantic equivalence and content validity of this Chinese version (FAS-C), respectively. A total of 123 Chinese primary caregivers of relatives with dementia were recruited from three elderly community care centers in Hong Kong. The FAS-C was administered with the Chinese versions of the 5-item Mental Health Inventory (MHI-5), the Zarit Burden Interview (ZBI) and the Revised Memory and Behavioral Problem Checklist (RMBPC). The FAS-C had excellent semantic equivalence with the original version and a content validity index of 0.92. Exploratory factor analysis identified a three-factor structure for the FAS-C (hostile acts, criticism and distancing). Cronbach's alpha of the FAS-C was 0.92. Pearson's correlation indicated that there were significant associations between a higher score on the FAS-C and greater caregiver burden (r=0.66, p<0.001), poorer mental health of the caregivers (r=-0.65, p<0.001) and a higher level of dementia-related symptoms (frequency of symptoms: r=0.45, p<0.001; symptom disturbance: r=0.51, p<0.001), which serves to suggest its construct validity. For detecting severe depressive symptoms of the family

Rest-activity rhythm and sleep characteristics associated with depression symptom severity in strained dementia caregivers.

PubMed

Smagula, Stephen F; Krafty, Robert T; Taylor, Briana J; Martire, Lynn M; Schulz, Richard; Hall, Martica H

2017-12-01

Depression is associated with disturbances to sleep and the 24-h sleep-wake pattern (known as the rest-activity rhythm: RAR). However, there remains a need to identify the specific sleep/RAR correlates of depression symptom severity in population subgroups, such as strained dementia caregivers, who are at elevated risk for major depressive disorder. We assessed the cross-sectional associations of sleep/RARs with non-sleep depression symptom severity among 57 (mean age: 74 years, standard deviation: 7.4) strained dementia caregivers who were currently without clinical depression. We derived sleep measures from polysomnography and actigraphy, modelled RARs using a sigmoidally transformed cosine curve and measured non-sleep depression symptom severity using the Hamilton Depression Rating Scale (HRDS) with sleep items removed. The following sleep-wake measures were associated with greater depression symptom severity (absolute Spearman's correlations ranged from 0.23 to 0.32): more time awake after sleep onset (WASO), higher RAR middle level (mesor), relatively shorter active periods (alpha), earlier evening settling time (down-mesor) and less steep RARs (beta). In multivariable analysis, high WASO and low RAR beta were associated independently with depression symptom severity. Predicted non-sleep HDRS means (95% confidence intervals) in caregivers with and without these characteristics were: normal WASO/beta = 3.7 (2.3-5.0), high WASO/normal beta = 5.5 (3.5-7.6), normal WASO/low beta = 6.3 (3.6-8.9) and high WASO/low beta = 8.1 (5.3-10.9). Thus, in our sample of strained caregivers, greater sleep fragmentation (WASO) and less sustained/sharply segregated resting and active periods (low RAR beta) correlate uniquely with depression symptom severity. Longitudinal studies are needed to establish whether these independent sleep-wake correlates of depression symptoms explain heightened depression risk in dementia caregivers. © 2017 European Sleep Research Society.

[Implementation and (cost-)effectiveness of case management for people with dementia and their informal caregivers: results of the COMPAS study].

PubMed

van Mierlo, Lisa D; MacNeil-Vroomen, Janet; Meiland, Franka J M; Joling, Karlijn J; Bosmans, Judith E; Dröes, Rose Marie; Moll van Charante, Eric P; de Rooij, Sophia E J A; van Hout, Hein P J

2016-12-01

Different forms of case management for dementia have emerged over the past few years. In the COMPAS study (Collaborative dementia care for patients and caregivers study), two prominent Dutch case management forms were studied: the linkage and the integrated care form. Evaluation of the (cost)effectiveness of two dementia case management forms compared to usual care as well as factors that facilitated or impeded their implementation. A mixed methods design with a) a prospective, observational controlled cohort study with 2 years follow-up among 521 dyads of people with dementia and their primary informal caregiver with and without case management; b) interviews with 22 stakeholders on facilitating and impeding factors of the implementation and continuity of the two case management models. Outcome measures were severity and frequency of behavioural problems (NPI) for the person with dementia and mental health complaints (GHQ-12) for the informal caregiver, total met and unmet care needs (CANE) and quality adjusted life years (QALYs). Outcomes showed a better quality of life of informal caregivers in the integrated model compared to the linkage model. Caregivers in the control group reported more care needs than those in both case management groups. The independence of the case management provider in the integrated model facilitated the implementation, while the rivalry between multiple providers in the linkage model impeded the implementation. The costs of care were lower in the linkage model (minus 22 %) and integrated care model (minus 33 %) compared to the control group. The integrated care form was (very) cost-effective in comparison with the linkage form or no case management. The integrated care form is easy to implement.

Caregivers' experience of the decision-making process for placing a person with dementia into a nursing home: comparing caregivers from Chinese ethnic minority with those from English-speaking backgrounds.

PubMed

Caldwell, Lauren; Low, Lee-Fay; Brodaty, Henry

2014-03-01

The experience of care transitions for people with dementia from ethnic minority groups has been poorly researched. Few studies have examined the decision to put someone on a waiting list for a nursing home and then actually accept a place. Many nursing homes have long waiting lists, but sometimes offers of a place are declined. Our aims were to investigate the decision-making process for placing a person with dementia on a waiting list for a nursing home, why offers of a place are accepted or declined, and the influence of cultural factors, comparing caregivers from Chinese and English-speaking backgrounds. Semi-structured interviews with 27 caregivers of people with dementia on waiting lists or living in nursing homes (20 Chinese background and seven English-speaking background) were conducted, with thematic analysis of factors affecting caregivers' decision-making. Caregivers were at different stages of decision-making when they applied for a waiting list - some were ready for placement, others applied "just in case," and for some there was no waiting time because of an urgent need for placement. Caregivers' decisions were influenced by their emotions and expectations of nursing homes. The decision-making process was similar for both cultural groups, but Chinese caregivers spoke more about their sense of duty, the need for a Chinese specific facility, and declining a place because of family disagreement. Understanding cultural issues, including stereotypes and concerns about nursing homes, and providing better information about admission processes may help caregivers by allaying their anxiety about nursing home placement.

Alzheimer's and other dementias in Canada, 2011 to 2031: a microsimulation Population Health Modeling (POHEM) study of projected prevalence, health burden, health services, and caregiving use.

PubMed

Manuel, Douglas G; Garner, Rochelle; Finès, Philippe; Bancej, Christina; Flanagan, William; Tu, Karen; Reimer, Kim; Chambers, Larry W; Bernier, Julie

2016-01-01

Worldwide, there is concern that increases in the prevalence of dementia will result in large demands for caregivers and supportive services that will be challenging to address. Previous dementia projections have either been simple extrapolations of prevalence or macrosimulations based on dementia incidence. A population-based microsimulation model of Alzheimer's and related dementias (POHEM:Neurological) was created using Canadian demographic data, estimates of dementia incidence, health status (health-related quality of life and mortality risk), health care costs and informal caregiving use. Dementia prevalence and 12 other measures were projected to 2031. Between 2011 and 2031, there was a projected two-fold increase in the number of people living with dementia in Canada (1.6-fold increase in prevalence rate). By 2031, the projected informal (unpaid) caregiving for dementia in Canada was two billion hours per year, or 100 h per year per Canadian of working age. The projected increase in dementia prevalence was largely related to the expected increase in older Canadians, with projections sensitive to changes in the age of dementia onset.

Canadian Alzheimer's disease caregiver survey: baby-boomer caregivers and burden of care.

PubMed

Black, Sandra E; Gauthier, Serge; Dalziel, William; Keren, Ron; Correia, Jane; Hew, Huong; Binder, Carin

2010-08-01

Alzheimer's disease (AD) burdens not only the person, but also the person's caregiver(s). This burden has been linked to negative health effects for caregivers. To that end, a survey of Canadian caregivers of persons with AD/other dementias was conducted to investigate the social, physical, psychological and financial impact of AD and/or dementia-related conditions on caregivers' quality of life. A web-based survey, the Canadian Alzheimer's Disease Caregiver survey, was made available through the Canadian Alzheimer's Society website and 50plus.com, an internet portal for baby boomers (BB) (people aged 50 years or older), as well as through HarrisDecima Research's e-Vox panel. A total of 398 individuals completed the survey between 15 September and 5 November 2006. Of the 398 total respondents, 221 were identified as baby boomers who provided care to an individual with AD/dementia. Respondents identified several areas of burden of care. These included negative effects on emotional health (such as increased depression, more stress and greater fatigue), financial costs and a need to change a working situation (e.g. by retiring early, reducing work hours or refusing a promotion). Caregivers of persons with AD/related dementia face important social, physical, psychological and financial pressures. These negatively affect the quality of life of caregivers with a significant increased burden being placed on live-in caregivers versus caregivers who do not co-reside with their care recipients. Interventions that address these pressures will not only improve the health and well-being of caregivers, but likely also the care of persons with AD/dementia.

Leisure, gender, and kinship in dementia caregiving: psychological vulnerability of caregiving daughters with feelings of guilt.

PubMed

Romero-Moreno, Rosa; Losada, Andrés; Marquez, María; Laidlaw, Ken; Fernández-Fernández, Virginia; Nogales-González, Celia; López, Javier

2014-07-01

The moderator role of guilt on the effect of leisure activities on dementia caregivers' depressive symptoms was analyzed, considering differences by kinship and guilt as a multidimensional construct. Participants were 351 caregivers (58.97% daughters, 10.54% sons, 19.66% wives, and 10.83% husbands). Measures included frequency of leisure activities, depressive symptoms, and guilt (total scale and 5 factors). A moderator role of guilt was found only for daughters. Specifically, significant interactions between guilt and frequency of leisure activities were found for the total scale and for the Factors 1 (guilt about doing wrong by the care recipient), 2 (guilt about failing to meet the challenges of caregiving), and 3 (guilt about self-care). For those daughters who reported lower levels of leisure activities, showing higher levels of guilt was associated with higher scores in depressive symptoms, whereas those with lower levels of guilt showed lower depressive symptoms scores. Feelings of guilt may have different consequences on caregivers' distress depending on caregivers' gender and kinship. Daughters with higher levels of guilt who do not engage in leisure activities may be especially vulnerable to suffering psychological distress. © The Author 2013. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

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…

A Pilot Study of Immune and Mood Outcomes of a Community-Based Intervention for Dementia Caregivers: The PLST Intervention

PubMed Central

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

2010-01-01

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 demonstrated 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 six 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 NK cell cytotoxicity over the course of the study. PMID:12143075

Understanding the Influence of the Complex Relationships among Informal and Formal Supports on the Well-Being of Caregivers of Persons with Dementia

ERIC Educational Resources Information Center

Raina, Parminder; McIntyre, Chris; Zhu, Bin; McDowell, Ian; Santaguida, Pasqualina; Kristjansson, Betsy; Hendricks, Alexandra; Massfeller, Helen; Chambers, Larry

2004-01-01

This study examined the direct and indirect relationships between caring for a person with dementia and caregiver health. A conceptual model of the caregiver stress process considered informal caregiver characteristics, sources of caregiver stress, and the influence of informal and formal support on the well-being of the caregivers of persons with…

Developmental Sequelae of Caregiver's Stressful Police Contact among Minority Children Starting School

ERIC Educational Resources Information Center

Thomas-Tate, Shurita; Daugherty, Timothy K.

2017-01-01

Employing an existing database of African American and biracial children entering metropolitan Detroit schools, we examined children of caregivers with and without reported stressful police contact. As anticipated, young children of caregivers with recent stressful police contact appear to suffer cognitive performance decrements on a nonverbal…

Moderating effect of self-efficacy on the relation between behavior problems in persons with dementia and the distress they cause in caregivers.

PubMed

Nogales-González, C; Romero-Moreno, R; Losada, A; Márquez-González, M; Zarit, S H

2015-01-01

Behavioral and psychological symptoms in dementia (BPSD) are the principal sources of stress in caregivers. The aim of the present work is to analyze the moderating effect of self-efficacy for managing BPSD on the distress these problems generate in family caregivers. The participants were 231 family caregivers of people with dementia. We assessed the frequency and caregiver distress associated with three dimensions of BPSD (depressive, disruptive and memory problems). In addition, we assessed the moderating effect of self-efficacy for dealing with BPSD in the relationship between the dementia patient's frequency of BPSD and caregiver distress through hierarchical regression analyses, one for each of the dimensions of BPSD. We found a moderating effect of self-efficacy on the relation between the frequency of BPSD and the distress in caregivers for the dimensions of depressive and disruptive behaviors. Caregivers having to deal with a high frequency of behavior problems but with high levels of self-efficacy presented significantly lower levels of distress associated with depressive and disruptive behavior problems compared to those caregivers with low levels of self-efficacy. No differences in the effects of self-efficacy were found for distress levels of caregivers who dealt with low frequency of BPSD. Also, we did not find a moderating effect of self-efficacy on the relation between the frequency of memory problems and caregivers' distress. The results suggest that self-efficacy for managing BPSD attenuates the relation between the frequency of behavior problems – both disruptive and depressive – and the distress they cause in caregivers.

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…

Formal caregivers' experiences of aggressive behaviour in older people living with dementia in nursing homes: A systematic review.

PubMed

Holst, Adelheid; Skär, Lisa

2017-12-01

The purpose of this study was to investigate formal caregivers' experiences of aggressive behaviour in older people living with dementia in nursing homes. Aggressive behaviour symptoms among older people living with dementia are reported to be prevalent. As aggressive behaviour includes both verbal and physical behaviours, such as kicking, hitting and screaming, it causes an increased burden on formal caregivers. Professionals experiencing this aggression perceived it as challenging, causing physical and psychological damage, leading to anger, stress and depression. A systematic review was conducted. A search of published research studies between 2000 and 2015 was conducted using appropriate search terms. Eleven studies were identified and included in this review. The analysis resulted in four categories: formal caregivers' views on triggers of aggression, expressions of aggression, the effect of aggressive behaviours on formal caregivers and formal caregivers' strategies to address aggression. The results show that aggressive behaviour may lead to negative feelings in formal caregivers and nursing home residents. The results of this study suggest that having the ability to identify triggers possibly assists caregivers with addressing aggressive behaviour. Aggressive behaviour might also affect quality of care. Results from this systematic review indicate that caregivers prefer person-centred strategies to handle aggressive behaviour among older people, while the use of pharmaceuticals and coercion strategies is a last resort. © 2017 John Wiley & Sons Ltd.

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

The impact of individual Cognitive Stimulation Therapy (iCST) on cognition, quality of life, caregiver health, and family relationships in dementia: A randomised controlled trial.

PubMed

Orrell, Martin; Yates, Lauren; Leung, Phuong; Kang, Sujin; Hoare, Zoe; Whitaker, Chris; Burns, Alistair; Knapp, Martin; Leroi, Iracema; Moniz-Cook, Esme; Pearson, Stephen; Simpson, Stephen; Spector, Aimee; Roberts, Steven; Russell, Ian; de Waal, Hugo; Woods, Robert T; Orgeta, Vasiliki

2017-03-01

Cognitive stimulation therapy (CST) is a well-established group psychosocial intervention for people with dementia. There is evidence that home-based programmes of cognitive stimulation delivered by family caregivers may benefit both the person and the caregiver. However, no previous studies have evaluated caregiver-delivered CST. This study aimed to evaluate the effectiveness of a home-based, caregiver-led individual cognitive stimulation therapy (iCST) program in (i) improving cognition and quality of life (QoL) for the person with dementia and (ii) mental and physical health (well-being) for the caregiver. A single-blind, pragmatic randomised controlled trial (RCT) was conducted at eight study sites across the United Kingdom. The intervention and blinded assessment of outcomes were conducted in participants' homes. Three hundred fifty-six people with mild to moderate dementia and their caregivers were recruited from memory services and community mental health teams (CMHTs). Participants were randomly assigned to iCST (75, 30-min sessions) or treatment as usual (TAU) control over 25 wk. iCST sessions consisted of themed activities designed to be mentally stimulating and enjoyable. Caregivers delivering iCST received training and support from an unblind researcher. Primary outcomes were cognition (Alzheimer's Disease Assessment Scale-cognitive [ADAS-Cog]) and self-reported QoL (Quality of Life Alzheimer's Disease [QoL-AD]) for the person with dementia and general health status (Short Form-12 health survey [SF-12]) for the caregiver. Secondary outcomes included quality of the caregiving relationship from the perspectives of the person and of the caregiver (Quality of the Carer Patient Relationship Scale) and health-related QoL (European Quality of Life-5 Dimensions [EQ-5D]) for the caregiver. Intention to treat (ITT) analyses were conducted. At the post-test (26 wk), there were no differences between the iCST and TAU groups in the outcomes of cognition (mean

Stressors and anxiety in dementia caregiving: multiple mediation analysis of rumination, experiential avoidance, and leisure.

PubMed

Romero-Moreno, R; Losada, A; Márquez-González, M; Mausbach, B T

2016-11-01

Despite the robust associations between stressors and anxiety in dementia caregiving, there is a lack of research examining which factors contribute to explain this relationship. This study was designed to test a multiple mediation model of behavioral and psychological symptoms of dementia (BPSD) and anxiety that proposes higher levels of rumination and experiential avoidance and lower levels of leisure satisfaction as potential mediating variables. The sample consisted of 256 family caregivers. In order to test a simultaneously parallel multiple mediation model of the BPSD to anxiety pathway, a PROCESS method was used and bias-corrected and accelerated bootstrapping method was used to test confidence intervals. Higher levels of stressors significantly predicted anxiety. Greater stressors significantly predicted higher levels of rumination and experiential avoidance, and lower levels of leisure satisfaction. These three coping variables significantly predicted anxiety. Finally, rumination, experiential avoidance, and leisure satisfaction significantly mediated the link between stressors and anxiety. The explained variance for the final model was 47.09%. Significant contrasts were found between rumination and leisure satisfaction, with rumination being a significantly higher mediator. The results suggest that caregivers' experiential avoidance, rumination, and leisure satisfaction may function as mechanisms through which BPSD influence on caregivers' anxiety. Training caregivers in reducing their levels of experiential avoidance and rumination by techniques that foster their ability of acceptance of their negative internal experiences, and increase their level of leisure satisfaction, may be helpful to reduce their anxiety symptoms developed by stressors.

Facilitating ADLs by Caregivers of Persons with Dementia: The C3P Model

PubMed Central

Amella, Elaine J.; Batchelor-Aselage, Melissa B.

2015-01-01

The purpose of this paper is to explicate a change model for caregivers of persons with dementia to assist them in facilitating meals in the home, at community-based programs and in institutional settings. Building on a Social Ecological Model, the C3P Model—Change the Person, Change the People, Change the Place offers a clear method to adapt care strategies to foster independence while providing appropriate support as the person with dementia cognitively and functionally declines. Meals are highly embedded within a culture and are ritualized events within a family requiring an individualized approach when modifications are needed. PMID:24354332

Differences in stress-related ratings between research center and home environments in dementia caregivers using ecological momentary assessment.

PubMed

Fonareva, Irina; Amen, Alexandra M; Ellingson, Roger M; Oken, Barry S

2012-01-01

Clinicians and researchers working with dementia caregivers typically assess caregiver stress in a clinic or research center, but caregivers' stress is rooted at home where they provide care. This study aimed to compare ratings of stress-related measures obtained in research settings and in the home using ecological momentary assessment (EMA). EMA of 18 caregivers (mean age 66.4 years ±7.8; 89% females) and 23 non-caregivers (mean age 66.4 years ±7.9; 87% females) was implemented using a personal digital assistant. Subjects rated their perceived stress, fatigue, coping with current situation, mindfulness, and situational demand once in the research center and again at 3-4 semi-random points during a day at home. The data from several assessments conducted at home were averaged for statistical analyses and compared with the data collected in the research center. The testing environment had a differential effect on caregivers and non-caregivers for the ratings of perceived stress (p < 0.01) and situational demand (p = 0.01). When tested in the research center, ratings for all measures were similar between groups, but when tested at home, caregivers rated their perceived stress as higher than non-caregivers (p = 0.02). Overall, caregivers reported higher perceived stress at home than in the research center (p = 0.02), and non-caregivers reported greater situational demand in the research center than at home (p < 0.01). The assessment method and environment affect stress-related outcomes. Evaluating participants in their natural environment provides a more sensitive measure of stress-related outcomes. EMA provides a convenient way to gather data when evaluating dementia caregivers.

Dementia Care Comes Home: Patient and Caregiver Assessment via Telemedicine.

PubMed

Lindauer, Allison; Seelye, Adriana; Lyons, Bayard; Dodge, Hiroko H; Mattek, Nora; Mincks, Katherine; Kaye, Jeffrey; Erten-Lyons, Deniz

2017-10-01

We evaluated the feasibility and reliability of commonly used clinical dementia assessments when administered via direct-to-home telemedicine videoconferencing. To date, few studies assessed the suitability of these measures when used in this setting. Sixty-six participants (33 patients with Alzheimer's disease (AD) and their 33 caregivers) consented to assessment with a battery of tests in both the clinic setting and via telemedicine. We administered cognitive, behavior, and mood assessments to persons with mild, moderate, and severe AD both in the clinic setting and via direct-to-home telemedicine videoconferencing; test-retest reliability was assessed. We also explored how three caregiver measures performed when administered via telemedicine. Assessments were administered 2 weeks apart. Participant feedback about their experience was solicited. Twenty-eight dyads completed the assessments. Reliability was found to be good to excellent in all measures when used with direct-to-home telemedicine. For the most part, participants and clinicians found telemedicine to be a feasible option for assessing cognitive function and caregiver coping. Findings indicate that these measures can be used to assess persons with AD, as well as their caregivers, across the telemedicine platform, directly to their homes. Use of this technology can expand access to care to the millions across the United States with AD and their caregivers. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Caregiver Appraisals of Functional Dependence in Individuals With Dementia and Associated Caregiver Upset: Psychometric Properties of a New Scale and Response Patterns by Caregiver and Care Recipient Characteristics

PubMed Central

GITLIN, LAURA N.; ROTH, DAVID L.; BURGIO, LOUIS D.; LOEWENSTEIN, DAVID A.; WINTER, LARAINE; NICHOLS, LINDA; ARGÜELLES, SOLEDAD; CORCORAN, MARY; BURNS, ROBERT; MARTINDALE, JENNIFER

2008-01-01

Objective To evaluate psychometric properties and response patterns of the Caregiver Assessment of Function and Upset (CAFU), a 15-item multidimensional measure of dependence in dementia patients and caregiver reaction. Method 640 families were administered the CAFU (53% White, 43% African American, and 4% mixed race and ethnicity). We created a random split of the sample and conducted exploratory factor analyses on Sample 1 and confirmatory factor analyses on Sample 2. Convergent and discriminant validity were evaluated using Spearman rank correlation coefficients. Results A two-factor structure for functional items was derived, and excellent factorial validity was obtained. Convergent and discriminant validity were obtained for function and upset measures. Differential response patterns for dependence and caregiver upset were found for caregiver race, relationship, and care recipient gender but not for caregiver gender. Discussion The CAFU is easily administered, reliable, and valid for evaluating appraisals of dependencies and upsetting care areas. PMID:15750049

Burden of care, social support, and sense of coherence in elderly caregivers living with individuals with symptoms of dementia.

PubMed

Stensletten, Kari; Bruvik, Frøydis; Espehaug, Birgitte; Drageset, Jorunn

2016-11-01

Family members are often the care providers of individuals with dementia, and it is assumed that the need for this will increase. There has been little research into the association between the burden of care and the caregiver's sense of coherence or receipt of social support. This study examined the relationship between the social support subdimensions and sense of coherence and the burden of care among older people giving care to a partner with dementia. The study was a cross-sectional observation study of 97 individuals, ≥65 years old and living with a partner who had symptoms of dementia. We used the Informant Questionnaire on Cognitive Decline in the Elderly, the Relative Stress Scale, the Social Provisions Scale, the Sense of Coherence Scale, and a questionnaire on sociodemographic variables. We used multiple regression analysis in a general linear model procedure. We defined statistical significance as p < 0.05. With adjustments for sociodemographic variables, the association with burden of care was statistically significant for the subdimension attachment (p < 0.01) and for sense of coherence (p < 0.001). The burden of care was associated with attachment and with sense of coherence. Community nurses and other health professionals should take necessary action to strengthen attachment and sense of coherence among the caregivers of people with dementia. Qualitative studies could provide deeper understanding of the variation informal caregivers experience when living together with their partner with dementia. © The Author(s) 2014.

Effectiveness and cost-effectiveness of an in-home respite care program in supporting informal caregivers of people with dementia: design of a comparative study.

PubMed

Vandepitte, Sophie; Van Den Noortgate, Nele; Putman, Koen; Verhaeghe, Sofie; Annemans, Lieven

2016-12-02

Frequent hospitalization and permanent nursing home placement not only affect the well-being of persons with dementia, but also place great financial strain on society. Therefore, it is important to create effective strategies to support informal caregivers so that they can continue to perform their demanding role. Preliminary qualitative evidence suggests that community-based respite services can actually be important for caregivers, and that the level of evidence should be further established in terms of effectiveness. Therefore, a comparative study to assess the effectiveness and cost-effectiveness of an in-home respite care program will be initiated. This manuscript described a quasi-experimental study to assess (cost)-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia. 124 informal caregivers and persons with dementia will be included in the intervention group and will receive an in-home respite care program by an organization called Baluchon Alzheimer. 248 dyads will be included in the control group and will receive standard dementia care. The primary outcome is caregiver burden. Secondary outcomes are: quality of life of caregivers, frequency of behavioral problems of persons with dementia and the reactions of caregivers to those problems, intention to institutionalize the care-recipient, time to nursing home placement, resource use of the care-recipient, and willingness to pay for in-home respite care. When the trial demonstrates a difference in outcomes between both groups, within-trial and modeled cost-effectiveness analyses will be conducted in a separate economic evaluation plan to evaluate possible cost-effectiveness of the in-home respite care program compared to the control group receiving standard dementia care. Finally, the model based cost-effectiveness analyses will allow to extrapolate effects over a longer time horizon than the duration of the trial. This study will have great added value

Stressors and Well-Being among Caregivers to Older Adults with Dementia: The In-Home versus Nursing Home Experience.

ERIC Educational Resources Information Center

Stephens, Mary Ann Parris; And Others

1991-01-01

Examined differences in stressors and well-being for caregivers who care for relative with dementia at home and those with relative in nursing home (n=120). Found no differences in depression or somatic complaints, but nursing home caregivers reported fewer social disruptions and more stressors resulting from activities of daily living assistance,…

Changes in Sleep Predict Changes in Affect in Older Caregivers of Individuals with Alzheimer's Dementia: A Multilevel Model Approach.

PubMed

McCrae, Christina S; Dzierzewski, Joseph M; McNamara, Joseph P H; Vatthauer, Karlyn E; Roth, Alicia J; Rowe, Meredeth A

2016-05-01

Understanding predictors of older dementia caregivers' mood could provide insight into potential treatments which may delay institutionalization of their care recipient. Research with older noncaregivers has shown that nights characterized by better subjective sleep were associated with days characterized by higher positive and lower negative affect, and vice versa. Examining daily relationships is important, as sleep and affect are state-like behaviors that fluctuate within individuals, across time. This study was a preliminary examination of whether a sample with a greater proportion of older dementia caregivers exhibits similar daily sleep/affect associations. Sleep diaries, actigraphy, and affect data were collected concurrently for 7 days in 55 community-dwelling, dementia caregivers (M = 62.80 years, SD = 12.21; 77.8% female). Sleep and affect were examined within- (day-to-day level) and between-persons (mean level). Findings for older noncaregivers were replicated for negative affect only. Specifically, nights characterized by better subjective sleep were characterized by lower negative affect, and vice versa. Examining older caregivers' daily sleep/affect association is important, because caregiving-related awakenings are unavoidable, often unpredictable, and can impact mood. Future research is needed to examine whether regularization in awakenings and/or negative affect represent important secondary, or even target, treatment outcomes for this vulnerable population. © The Author 2014. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Vulnerability of caregivers of the elderly with dementia: a cross-sectional descriptive study.

PubMed

Leite, Bruna Silva; Camacho, Alessandra Conceição Leite Funchal; Joaquim, Fabiana Lopes; Gurgel, Jonas Lírio; Lima, Thiago Rodrigues; Queiroz, Raquel Santos de

2017-01-01

to evaluate the sociodemographic and clinical profile of the caregivers and its relation with the overburden from the care of the elderly with dementia. a cross-sectional descriptive study; the sample was non-probabilistic, developed with caregivers of elderly people with dementia. The field of investigation was the Health Care Center of the Elderly and their Caregivers (CASIC), in the city of Niterói, Rio de Janeiro, Brazil. Data collection took place from February to June 2016, with the following instruments: a sociodemographic questionnaire and Zarit scale. fifty percent of the caregivers presented moderate overburden; 38% presented little overburden; and 12% moderate/severe overburden. It was observed that the median of weekly care hours increases as the overburden increases. Caregivers with moderate to severe overburden, in the majority, do not share care. it is clear that the overburden of care places the caregiver in conditions of biological and psychological vulnerability. avaliar o perfil sociodemográfico e clínico dos cuidadores e sua relação com a sobrecarga proveniente do cuidado ao idoso com demência. estudo descritivo transversal, a amostra foi do tipo não probabilística, desenvolvida com os cuidadores de idosos com demência. O campo de investigação foi o Centro de Atenção à Saúde do Idoso e seus Cuidadores (CASIC), Niterói, Rio de Janeiro, Brasil. A coleta de dados ocorreu de fevereiro a junho de 2016, com os seguintes instrumentos: questionário sociodemográfico e escala de Zarit. 50% dos cuidadores apresentaram sobrecarga moderada, 38% apresentaram pouca sobrecarga e 12%, sobrecarga moderada/severa. Observou-se que a mediana das horas de cuidados semanais aumenta conforme a sobrecarga aumenta. Cuidadores com sobrecarga de moderada a severa, em caráter majoritário, não dividem o cuidado. Dessa forma, fica claro que a sobrecarga do cuidado coloca o cuidador em condições de vulnerabilidade biológica e psicológica.

Reminiscence therapy for dementia.

PubMed

Woods, B; Spector, A; Jones, C; Orrell, M; Davies, S

2005-04-18

Reminiscence Therapy (RT) involves the discussion of past activities, events and experiences with another person or group of people, usually with the aid of tangible prompts such as photographs, household and other familiar items from the past, music and archive sound recordings. Reminiscence groups typically involve group meetings in which participants are encouraged to talk about past events at least once a week. Life review typically involves individual sessions, in which the person is guided chronologically through life experiences, encouraged to evaluate them, and may produce a life story book. Family care-givers are increasingly involved in reminiscence therapy. Reminiscence therapy is one of the most popular psychosocial interventions in dementia care, and is highly rated by staff and participants. There is some evidence to suggest it is effective in improving mood in older people without dementia. Its effects on mood, cognition and well-being in dementia are less well understood. The objective of the review is to assess the effects of reminiscence therapy for older people with dementia and their care-givers. The trials were identified from a search of the Specialised Register of the Cochrane Dementia and Cognitive Improvement Group on 4 May 2004 using the term "reminiscence". The CDCIG Specialized Register contains records from all major health care databases (MEDLINE, EMBASE, PsycLIT, CINAHL) and many ongoing trials databases and is regularly updated. We contacted specialists in the field and also searched relevant Internet sites. We hand-searched Aging and Mental Health, the Gerontologist, Journal of Gerontology, Current Opinion in Psychiatry, Current Research in Britain: Social Sciences, British Psychological Society conference proceedings and Reminiscence database. Randomised controlled trials and quasi-randomized trials of reminiscence therapy for dementia. Two reviewers independently extracted data and assessed trial quality. Five trials are included

Changes in job stress and coping skills among caregivers after dementia care practitioner training.

PubMed

Takizawa, Takeya; Takahashi, Megumi; Takai, Michiko; Ikeda, Taichiro; Miyaoka, Hitoshi

2017-01-01

Dementia care practitioner training is essential for professional caregivers to acquire medical knowledge and care skills for dementia patients. We investigated the significance of training in stress management by evaluating caregivers' job stress and coping style before and after they have completed training. The subjects included 134 professional caregivers (41 men, 93 women) recruited from participants in training programmes held in Kanagawa Prefecture from August 2008 to March 2010. A survey using a brief job stress questionnaire and a coping scale was carried out before and after they completed their training. A t-test and multiple regression analysis were performed to evaluate the effects of the training. After the training, the scores of modifiers on the job stress scale and of the coping scale increased, whereas the scores of stress reactions on the job stress scale decreased. However, there were no changes in participants' subjective cognition concerning their workplace environment. Furthermore, the change in stress reaction score tended to correlate with the change in consultation score in all participants and with the change in problem-solving and consultation in male participants. Among female participants, the change in stress reaction score tended to correlate with change in support from superiors and colleagues as modifiers. The factors that correlated to the change in stress reaction score differed between genders. The findings suggest that training caregivers improves their stress reaction and coping skills. © 2016 The Authors. Psychogeriatrics © 2016 Japanese Psychogeriatric Society.

The Effects of Coping on Health Outcomes in Caregiving Spouses of Dementia Patients.

ERIC Educational Resources Information Center

Neundorfer, Marcia McCarthy

This study was undertaken to determine the effects of different ways of coping on caregivers' physical health and symptoms of depression and anxiety. Sixty persons living with and caring for a spouse with Alzheimer's disease (n=58) or multi-infarct dementia (n=2) were interviewed and evaluated by a series of instruments. Independent variables…

Differences in stress-related ratings between research center and home environments in dementia caregivers using ecological momentary assessment

PubMed Central

Fonareva, Irina; Amen, Alexandra M.; Ellingson, Roger M.; Oken, Barry S.

2012-01-01

Background Clinicians and researchers working with dementia caregivers typically assess caregiver stress in a clinic or research center, but caregivers’ stress is rooted at home where they provide care. The study aimed to compare ratings of stress-related measures obtained in research setting and home using ecological momentary assessment (EMA). Methods EMA of 18 caregivers (mean age 66.4±7.8, 89% females) and 23 non-caregivers (mean age 66.4±7.9, 87% females) was implemented using a personal digital assistant. Subjects rated their perceived stress, fatigue, coping with current situation, mindfulness, and situational demand once in the research center and again at 3–4 semi-random points during a day at home. The data from several assessments conducted at home were averaged for statistical analyses and compared to the data collected in the research center. Results Testing environment had a differential effect on caregivers and non-caregivers for the ratings of perceived stress (p < 0.01) and situational demand (p = 0.01). When tested in research center, ratings for all measures were similar between groups, but when tested at home, caregivers rated their perceived stress higher than non-caregivers (p = 0.02). Overall, caregivers reported higher perceived stress at home than in the research center (p = 0.02), and non-caregivers reported greater situational demand in the research center than at home (p < 0.01). Conclusions The assessment method and environment affect stress-related outcomes. Evaluating participants in their natural environment provides a more sensitive measure of stress-related outcomes. EMA provides a convenient way to gather data when evaluating dementia caregivers. PMID:21777503

Effects of aromatherapy on agitation and related caregiver burden in patients with moderate to severe dementia: A pilot study.

PubMed

Turten Kaymaz, Tugce; Ozdemir, Leyla

We examined the effects of aromatherapy on agitation in patients with dementia and evaluated related caregiver burden. Patients and their caregivers from two hospitals in Turkey were selected and divided into an intervention group (n = 14) and a control group (n = 14). Patients were stratified according to their dementia phase and intake of antipsychotic medication. The intervention group received aromatherapy via massage and inhalation at home for 4 weeks. The control group received no intervention. Data were collected using the Neuropsychiatric Inventory (NPI), the Cohen-Mansfield Agitation Inventory (CMAI) and the Zarit Burden Interview (ZBI). At 2 and 4 weeks, the NPI scores were significantly lower in the intervention group (p < 0.05). At 4 weeks, the CMAI and ZBI scores were significantly lower in the intervention group (p < 0.05). In conclusion, after aromatherapy, agitation, neuropsychiatric symptoms, and caregiver distress significantly reduced, and aromatherapy prevented caregiver burden increase. Copyright © 2016 Elsevier Inc. All rights reserved.

'Gotta be sit down and worked out together': views of Aboriginal caregivers and service providers on ways to improve dementia care for Aboriginal Australians.

PubMed

Smith, Kate; Flicker, Leon; Shadforth, Geraldine; Carroll, Emily; Ralph, Naomi; Atkinson, David; Lindeman, Melissa; Schaper, Frank; Lautenschlager, Nicola T; LoGiudice, Dina

2011-01-01

Dementia is five-fold more prevalent among Aboriginal than non-Aboriginal Australians. Despite this, the quality of care available to people living with dementia in remote Aboriginal communities is poor. The objective of this study was to determine ways to overcome factors affecting the successful delivery of services to Aboriginal people with dementia living in remote communities, and to their families and communities. This qualitative research took place in the Kimberley Region of Western Australia. Data collection occurred in three stages: (1) interviews with service providers to identify the services available; (2) interviews with the caregivers of Aboriginal people living with dementia and community-based care workers; and (3) focus groups with community representatives and community care staff. Each stage was concluded when no new themes emerged. At each stage the transcribed information was analysed and joint interpretation identified common themes. In total, 42 service providers, 31 caregivers and community-based care workers were interviewed and 3 focus groups were conducted. Obstacles to accessing quality care were mentioned and recommendations on ways to improve care were made. The key themes that emerged were caregiver role, perspectives of dementia, community and culturally-appropriate care, workforce, education and training, issues affecting remote communities and service issues. Detailed information on how each theme affects the successful delivery of dementia care is provided. These research findings indicate that people living with dementia and their caregivers in remote Aboriginal communities are struggling to cope. They are requesting and require better community care. Implementing a culturally safe model of dementia care for remote Aboriginal communities that encompasses the recommendations made and builds on the strengths of the communities could potentially deliver the required improvements to dementia care for this population.

Reviewing the definition of crisis in dementia care

PubMed Central

2013-01-01

Background Crisis is a term frequently used in dementia care lacking a standardized definition. This article systematically reviews existing definitions of crisis in dementia care literature to create a standardized definition that can be utilized for research, policy and clinical practice. Methods We systematically searched for articles containing definitions of crisis in the context of dementia care. We created an operational framework of crisis based on retrieved definitions. Recommendations to address crisis situations were reviewed and classified according to care settings. Results Abstracts and titles of 1,113 articles, screened from PubMed and EMBASE, were narrowed down to 27 articles. After review, crisis in dementia was defined as a process where a stressor causes an imbalance requiring an immediate decision to be made which leads to a desired outcome and therefore a resolution of the crisis. If the crisis is not resolved, the cycle continues. Recommendations for resolving crisis involving persons with dementia and their caregivers include awareness therapy after diagnosis and increased contact with general practitioners, case manager consultations, caregiver support and education. Furthermore, nursing home staff should be attuned to the environmental, physical and psychological needs of persons with dementia. Conclusions This is the first article to review the definition of crisis in the context of dementia care. A review of the literature indicated that the definition of a crisis is idiosyncratic. Therefore, it is difficult to prevent or plan for all crises. We used an operational framework to compile types of crisis stressors and recommendations from the crisis literature based on three different perspectives; the person with the dementia, the caregiver and the healthcare providers. PMID:23374634

Reviewing the definition of crisis in dementia care.

PubMed

MacNeil Vroomen, Janet; Bosmans, Judith E; van Hout, Hein P J; de Rooij, Sophia E

2013-02-01

Crisis is a term frequently used in dementia care lacking a standardized definition. This article systematically reviews existing definitions of crisis in dementia care literature to create a standardized definition that can be utilized for research, policy and clinical practice. We systematically searched for articles containing definitions of crisis in the context of dementia care. We created an operational framework of crisis based on retrieved definitions. Recommendations to address crisis situations were reviewed and classified according to care settings. Abstracts and titles of 1,113 articles, screened from PubMed and EMBASE, were narrowed down to 27 articles. After review, crisis in dementia was defined as a process where a stressor causes an imbalance requiring an immediate decision to be made which leads to a desired outcome and therefore a resolution of the crisis. If the crisis is not resolved, the cycle continues. Recommendations for resolving crisis involving persons with dementia and their caregivers include awareness therapy after diagnosis and increased contact with general practitioners, case manager consultations, caregiver support and education. Furthermore, nursing home staff should be attuned to the environmental, physical and psychological needs of persons with dementia. This is the first article to review the definition of crisis in the context of dementia care. A review of the literature indicated that the definition of a crisis is idiosyncratic. Therefore, it is difficult to prevent or plan for all crises. We used an operational framework to compile types of crisis stressors and recommendations from the crisis literature based on three different perspectives; the person with the dementia, the caregiver and the healthcare providers.

Family caregivers’ role implementation at different stages of dementia

PubMed Central

Huang, Huei-Ling; Shyu, Yea-Ing L; Chen, Min-Chi; Huang, Chin-Chang; Kuo, Hung-Chou; Chen, Sien-Tsong; Hsu, Wen-Chuin

2015-01-01

Purpose The purpose of this study was to explore family caregivers’ role-implementation experiences at different stages of dementia. Patients and methods For this cross-sectional, exploratory study, 176 dyads of family caregivers and their community-dwelling elderly relatives with dementia were recruited from the neurological clinics of a medical center in Taiwan. The Family Caregiving Inventory was used to assess family caregivers for caregiving activities, role strain, role preparation, and help from others at different stages of care receivers’ dementia. Results Family caregivers’ caregiving activities were related to patients’ stages of dementia. For patients with mild dementia, caregivers provided more assistance in transportation and housekeeping. In addition to these two activities, family caregivers of patients with moderate dementia provided more assistance with mobility and protection. For patients with severe dementia, family caregivers provided more assistance with personal care, mobility and protection, transportation, and housekeeping. Overall, family caregivers reported having some preparation to provide care; the most difficult caregiving activity was identified as managing behavioral problems. Conclusion This study’s results provide a knowledge base for designing dementia stage-specific interventions in clinical practice and developing community-based, long-term care systems for families of patients with dementia. PMID:25584022

Effect of Moderate to Vigorous Physical Activity Intervention on Improving Dementia Family Caregiver Physical Function: A Randomized Controlled Trial

PubMed Central

Farran, Carol J; Etkin, Caryn D; Eisenstein, Amy; Paun, Olimpia; Rajan, Kumar B; Sweet, Cynthia M Castro; McCann, Judith J; Barnes, Lisa L; Shah, Raj C; Evans, Denis A

2017-01-01

Objective Alzheimer’s disease and related dementias (ADRD) affect more than five million Americans and their family caregivers. Caregiving creates challenges, may contribute to decreased caregiver health and is associated with $9.7 billion of caregiver health care costs. The purpose of this 12 month randomized clinical trial (RCT) was to examine if the Enhancing Physical Activity Intervention (EPAI), a moderate to vigorous physical activity (MVPA) treatment group, versus the Caregiver Skill Building Intervention (CSBI) control, would have greater: (1) MVPA adherence; and (2) physical function. Methods Caregivers were randomly assigned to EPAI or CSBI (N=211). MVPA was assessed using a self-report measure; and physical function was objectively assessed using two measures. Intention-to-treat analyses used descriptive, categorical and generalized estimating equations (GEE), with an exchangeable working correlation matrix and a log link, to examine main effects and interactions in change of MVPA and physical function over time. Results At 12 months, EPAI significantly increased MVPA (p=<0.001) and number of steps (p=< .01); maintained stable caregiving hours and use of formal services; while CSBI increased hours of caregiving (p=<0.001) and used more formal services (p=<0.02). Qualitative physical function data indicated that approximately 50% of caregivers had difficulties completing physical function tests. Conclusion The EPAI had a stronger 12 month effect on caregiver MVPA and physical function, as well as maintaining stability of caregiving hours and formal service use; while CSBI increased caregiving hours and use of formal services. A study limitation included greater EPAI versus CSBI attrition. Future directions are proposed for dementia family caregiver physical activity research. PMID:28752016

Effectiveness of a psychoeducational skill training DVD program to reduce stress in Chinese American dementia caregivers: results of a preliminary study.

PubMed

Gallagher-Thompson, Dolores; Wang, Peng-Chih; Liu, Weiling; Cheung, Vinnie; Peng, Rebecca; China, Danielle; Thompson, Larry W

2010-04-01

Prior research (Gallagher-Thompson, D., Gray, H., Tang, P., Pu, C.-Y., Tse, C., Hsu, S., et al. (2007). Impact of in-home intervention versus telephone support in reducing depression and stress of Chinese caregivers: Results of a pilot study. American Journal of Geriatric Psychiatry, 15, 425-434.) found that an in-home behavioral management program, derived conceptually from cognitive behavioral theories (CBT), was effective in reducing caregiver related stress and depressive symptoms in Chinese American dementia caregivers (CGs). Results were promising, but a more cost-effective intervention is needed to serve this growing population. Past work also found that a psychoeducational videotaped training program based on CBT was effective in reducing stress due to caregiving in Caucasian and African American dementia family CGs (Steffen, 2000, Anger management for dementia caregivers: A preliminary study using video and telephone interventions. Behavior Therapy, 31, 281-299.). To date no research has been conducted using a technological medium to deliver a similar kind of intervention to Chinese American caregivers. The present study evaluated the effectiveness of a similar but culturally "tailored" program in which 70 CGs were randomly assigned to a 12-week CBT skill training program delivered on a DVD, or to a general educational DVD program on dementia. Both were available in Mandarin Chinese or English as preferred. Pre post change analyses indicated that CGs did not differ on change in level of negative depressive symptoms, but positive affect was higher, and patient behaviors were appraised as less stressful and bothersome, for CGs in the CBT skill training program. They were also more satisfied with the program overall and reported that they believed they were able to give care more effectively. Results encourage further development of theoretically based interventions, delivered using modern technology, for this ever increasing group of CGs.

Testing the Implementation of the Veder Contact Method: A Theatre-Based Communication method in Dementia Care.

PubMed

Boersma, Petra; van Weert, Julia C M; Lissenberg-Witte, Birgit I; van Meijel, Berno; Dröes, Rose-Marie

2018-01-08

There is a lack of research on implementation of person-centered care in nursing home care. The purpose of this study was to assess the implementation of the Veder contact method (VCM), a new person-centered method using theatrical, poetic and musical communication for application in 24-hr care. Caregivers (n = 136) and residents (n = 141) participated in a 1-year quasi-experimental study. Foundation Theater Veder implemented VCM on six experimental wards and rated implementation quality. Six control wards delivered care-as-usual. Before and after implementation, caregiver behavior was assessed during observations using the Veder-observation list and Quality of Caregivers' Behavior-list. Caregiver attitude was rated with the Approaches to Dementia Questionnaire. Quality of life, behavior, and mood of the residents were measured with QUALIDEM, INTERACT and FACE. Residents' care plans were examined for person-centered background information. Significant improvements in caregivers' communicative behavior (i.e., the ability to apply VCM, establishing positive interactions) and some aspects of residents' behavior and quality of life (i.e., positive affect, social relations) were found on the experimental wards with a high implementation score, as compared to the experimental wards with a low implementation score, and the control wards. No significant differences were found between the groups in caregivers' attitudes, residents' care plans, or mood. The positive changes in caregivers' behavior and residents' well-being on the high implementation score wards confirm the partly successful VCM implementation. Distinguishing between wards with a high and low implementation score provided insight into factors which are crucial for successful implementation. © The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Medical Care Tasks among Spousal Dementia Caregivers: Links to Care-Related Sleep Disturbances.

PubMed

Polenick, Courtney A; Leggett, Amanda N; Maust, Donovan T; Kales, Helen C

2018-05-01

Medical care tasks are commonly provided by spouses caring for persons living with dementia (PLWDs). These tasks reflect complex care demands that may interfere with sleep, yet their implications for caregivers' sleep outcomes are unknown. The authors evaluated the association between caregivers' medical/nursing tasks (keeping track of medications; managing tasks such as ostomy care, intravenous lines, or blood testing; giving shots/injections; and caring for skin wounds/sores) and care-related sleep disturbances. A retrospective analysis of cross-sectional data from the 2011 National Health and Aging Trends Study and National Study of Caregiving was conducted. Spousal caregivers and PLWDs/proxies were interviewed by telephone at home. The U.S. sample included 104 community-dwelling spousal caregivers and PLWDs. Caregivers reported on their sociodemographic and health characteristics, caregiving stressors, negative caregiving relationship quality, and sleep disturbances. PLWDs (or proxies) reported on their health conditions and sleep problems. Caregivers who performed a higher number of medical/nursing tasks reported significantly more frequent care-related sleep disturbances, controlling for sociodemographic and health characteristics, caregiving stressors, negative caregiving relationship quality, and PLWDs' sleep problems and health conditions. Post hoc tests showed that wound care was independently associated with more frequent care-related sleep disturbances after accounting for the other medical/nursing tasks and covariates. Spousal caregivers of PLWDs who perform medical/nursing tasks may be at heightened risk for sleep disturbances and associated adverse health consequences. Interventions to promote the well-being of both care partners may benefit from directly addressing caregivers' needs and concerns about their provision of medical/nursing care. Copyright © 2018 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights

Implementation of the Veder contact method in daily nursing home care for people with dementia: a process analysis according to the RE-AIM framework.

PubMed

Boersma, Petra; van Weert, Julia C M; van Meijel, Berno; Dröes, Rose-Marie

2017-02-01

To perform a process analysis of the implementation of the Veder contact method for gaining insight into factors that influence successful implementation. Research showed that the original Veder method, which is a 'living-room theatre performance' provided by actors, positively influenced mood and quality of life of people with dementia. Training caregivers to execute such 'performances' and accomplish the same effects as actors proved difficult. However, key elements of the method were considered suitable for application in daily care, resulting in the development of a modified version of the method, named the Veder contact method. The Veder contact method combines elements from existing psychosocial interventions, e.g. reminiscence, validation and neuro-linguistic-programming with theatrical, poetic and musical communication, and applies this into daily care. For this process analysis a multiple case study design was used with the nursing home ward (n = 6) as the unit of analysis. Eight focus groups with caregivers (n = 42) and 12 interviews with stakeholders were held. Using the Reach, Effectiveness, Adoption, Implementation, Maintenance framework, a thematic analysis was conducted. The reach of the intervention (43-86%) and aspects of implementation-effectiveness (e.g. increased experienced reciprocity in contact with residents) facilitated implementation. For adoption and implementation, both facilitators (e.g. development of competences, feasibility of the Veder contact method without requiring extra time investment) and barriers (e.g. insufficient support of management, resistance of caregivers against the Veder contact method, organisational problems) were identified. Little effort was put into maintenance: only one nursing home developed a long-term implementation strategy. The Veder contact method can be applied in daily care without additional time investments. Although adopted by many caregivers, some were reluctant using the Veder contact method

Activity Preferences of persons with dementia: An examination of reports by formal and informal caregivers.

PubMed

Cohen-Mansfield, Jiska; Gavendo, Rachel; Blackburn, Erin

2017-01-01

Objectives The aims of this study are (1) to describe the types of leisure activities preferred by persons with dementia in the past and present, as reported by family members and therapeutic recreation staff members, and (2) to examine the influence of demographic and functional abilities variables on the perceived current interest of persons with dementia. Method Family members of persons with dementia and therapeutic recreation staff involved in the care of those persons completed an activities preference assessment concerning the persons with dementia. Participants were recruited from a nursing home and a senior day center. Family members completed the assessment for the past and present, and staff members completed the assessment for the present. Results For present preferences, music was the most often preferred activity according to both family and staff, followed by reminiscence and reading, while the least desirable activity was cooking/baking according to family and trivia games according to the staff. Current preferences were significantly related to past preferences. Gender was also related to preference for some activities. A significant reduction in preference from the premorbid past to the present was found for music, reading, and cooking. Additionally, the number of activities persons preferred as reported by both caregiver groups was affected by dementia. Family members tended to report lower preference levels for the activities in the present in comparison to the staff, and they were also more likely to report not knowing the present level of preference than therapeutic recreation staff members. Conclusion The assessments by both therapeutic recreation staff members and family members shed light on leisure preferences of persons with dementia, while the varying reports reflect a possibly different perspective of the two caregiver groups.

Diurnal Salivary Alpha-amylase Dynamics among Dementia Family Caregivers

PubMed Central

Liu, Yin; Granger, Douglas A.; Kim, Kyungmin; Klein, Laura C.; Almeida, David M.; Zarit, Steven H.

2016-01-01

Objective The study examined diurnal regulation of salivary alpha-amylase (sAA) in association with daily stressors, adult day services (ADS) use, and other caregiving characteristics. Methods A sample of 165 family caregivers of individuals with dementia (IWD) completed an 8-day diary study. Caregivers provided 5 saliva samples across the 8 days. On some days, caregivers provided all or most of the care. On other days, their relative attended ADS for part of the day. A 3-level unconditional linear spline model was fit to describe the typical sAA diurnal rhythms. Predictors were then added to the unconditional model to test the hypotheses on ADS use and daily stressors. Results Daily ADS use did not have an effect on diurnal sAA regulation. However, controlling for daily ADS use, greater ADS use over the 8 days was associated with a more prominent rise between 30 minutes after wake-up and before lunch, and a more prominent decline between before lunch and late afternoon. Fewer ADS days were associated with a more flattened sAA diurnal rhythm. Additionally, greater daily care-related stressor exposures had a within-person association with lower sAA levels in the late afternoon. Care-related stressor exposures had significant within- and between-person associations with sAA diurnal slopes. Furthermore, daily positive experiences had a significant between-person association with sAA diurnal slopes. Conclusions Caring for a disabled family member may heighten the vulnerability to potential physiological conditions. Respite from care stressors from ADS use may have some biobehavioral benefits on sAA regulations. PMID:27786517

Validating a Cantonese short version of the Zarit Burden Interview (CZBI-Short) for dementia caregivers.

PubMed

Tang, Jennifer Yee-Man; Ho, Andy Hau-Yan; Luo, Hao; Wong, Gloria Hoi-Yan; Lau, Bobo Hi-Po; Lum, Terry Yat-Sang; Cheung, Karen Siu-Lan

2016-09-01

The present study aimed to develop and validate a Cantonese short version of the Zarit Burden Interview (CZBI-Short) for Hong Kong Chinese dementia caregivers. The 12-item Zarit Burden Interview (ZBI) was translated into spoken Cantonese and back-translated by two bilingual research assistants and face validated by a panel of experts. Five hundred Chinese dementia caregivers showing signs of stress reported their burden using the translated ZBI and rated their depressive symptoms, overall health, and care recipients' physical functioning and behavioral problems. The factor structure of the translated scale was identified using principal component analysis and confirmatory factor analysis; internal consistency and item-total correlations were assessed; and concurrent validity was tested by correlating the ZBI with depressive symptoms, self-rated health, and care recipients' physical functioning and behavioral problems. The principal component analysis resulted in 11 items loading on a three-factor model comprised role strain, self-criticism, and negative emotion, which accounted for 59% of the variance. The confirmatory factor analysis supported the three-factor model (CZBI-Short) that explained 61% of the total variance. Cronbach's alpha (0.84) and item-total correlations (rho = 0.39-0.71) indicated CZBI-Short had good reliability. CZBI-Short showed correlations with depressive symptoms (r = 0.50), self-rated health (r = -0.26) and care recipients' physical functioning (r = 0.18-0.26) and disruptive behaviors (r = 0.36). The 12-item CZBI-Short is a concise, reliable, and valid instrument to assess burden in Chinese dementia caregivers in clinical and social care settings.

Financial Care for Older Adults With Dementia.

PubMed

Pan, Xi; Lee, Yeonjung; Dye, Cheryl; Roley, Laurie Theriot

2017-06-01

This article describes an examination of the sociodemographic characteristics of adult children, particularly Baby Boomer caregivers, who provide financial care to older parents with dementia. The sample including 1,011adult children dementia caregivers aged 50 to 64 years is selected from a nationally representative sample in the 2010 Health and Retirement Study. Exact logistic regression revealed that race, provision of financial assistance to caregiver children, and the number of their children are significantly associated with financial caregiving of parents. Non-White caregivers are more likely to provide financial care to their parents or parents-in-law with dementia; those who have more children and provide financial assistance to their children are less likely to provide financial care to parents with dementia. The current findings present valuable new information on the sociodemographic characteristics of adult children who provide financial assistance to parents with dementia and inform research, programs, and services on dementia caregiving.

The two-year incidence of depression and anxiety disorders in spousal caregivers of persons with dementia: who is at the greatest risk?

PubMed

Joling, Karlijn J; van Marwijk, Harm W J; Veldhuijzen, Aaltje E; van der Horst, Henriëtte E; Scheltens, Philip; Smit, Filip; van Hout, Hein P J

2015-03-01

Caregivers of persons with dementia play an important and economically valuable role within society, but many may do so at a considerable cost to themselves. Knowing which caregivers have the highest risk of developing a mental disorder may contribute to better support of ultra-high-risk groups with preventive interventions. This study aims to describe the incidence of depression and anxiety disorders in caregivers and to identify its significant predictors. Prospective cohort study with a follow-up of 24 months. 181 spousal caregivers of persons with dementia without a clinical depression or anxiety disorder at baseline. Memory clinics, case management services, and primary care settings in the Netherlands. The onset of depression and anxiety was measured every 3 months with the MINI International Neuropsychiatric Interview, a structured diagnostic instrument for DSM-IV mental disorders. Potential predictors were assessed at baseline. 60% of the caregivers developed a depressive and/or anxiety disorder within 24 months: 37% a depression, 55% an anxiety disorder, and 32% both disorders. Sub-threshold depressive symptoms (Wald χ2=6.20, df=1, OR: 3.2, 95% CI: 1.28-8.03, p=0.013) and poor self-reported health of the caregiver (Wald χ2=5.56, df=1, OR: 1.17, 95% CI: 1.03-1.34, p=0.018) at baseline were significant predictors of disorder onset. Spousal caregivers of persons with dementia have a high risk to develop a mental disorder. Indicators related to the caregiver's (mental) health rather than environmental stressors such as patient characteristics or interruption of caregivers' daily activities predict disorder onset and can be used to identify caregivers for whom supporting preventive interventions are indicated. Copyright © 2015 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

A randomized controlled trial of a community-based dementia care coordination intervention: effects of MIND at Home on caregiver outcomes.

PubMed

Tanner, Jeremy A; Black, Betty S; Johnston, Deirdre; Hess, Edward; Leoutsakos, Jeannie-Marie; Gitlin, Laura N; Rabins, Peter V; Lyketsos, Constantine G; Samus, Quincy M

2015-04-01

To assess whether MIND at Home, a community-based, multicomponent, care coordination intervention, reduces unmet caregiving needs and burden in informal caregivers of persons with memory disorders. An 18-month randomized controlled trial of 289 community-living care recipient (CR)-caregiver (informal caregivers, i.e., unpaid individuals who regularly assisted the CR) dyads from 28 postal code areas of Baltimore, Maryland was conducted. All dyads and the CR's primary care physician received the written needs assessment results and intervention recommendations. Intervention dyads then received an 18-month care coordination intervention delivered by nonclinical community workers to address unmet care needs through individualized care planning, referral and linkage to dementia services, provision of caregiver dementia education and skill-building strategies, and care progress monitoring by an interdisciplinary team. Primary outcome was total percent of unmet caregiver needs at 18 months. Secondary outcomes included objective and subjective caregiver burden measures, quality of life (QOL), and depression. Total percent of unmet caregiver needs declined in both groups from baseline to 18 months, with no statistically significant between-group difference. No significant group differences occurred in most caregiver burden measures, depression, or QOL. There was a potentially clinically relevant reduction in self-reported number of hours caregivers spent with the CR for MIND participants compared with control subjects. No statistically significant impacts on caregiver outcomes were found after multiple comparison adjustments. However, MIND at Home appeared to have had a modest and clinically meaningful impact on informal caregiver time spent with CRs. Copyright © 2015 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.

The impact of individual Cognitive Stimulation Therapy (iCST) on cognition, quality of life, caregiver health, and family relationships in dementia: A randomised controlled trial

PubMed Central

Leung, Phuong; Whitaker, Chris; Burns, Alistair; Knapp, Martin; Leroi, Iracema; Spector, Aimee; Roberts, Steven; de Waal, Hugo; Orgeta, Vasiliki

2017-01-01

Background Cognitive stimulation therapy (CST) is a well-established group psychosocial intervention for people with dementia. There is evidence that home-based programmes of cognitive stimulation delivered by family caregivers may benefit both the person and the caregiver. However, no previous studies have evaluated caregiver-delivered CST. This study aimed to evaluate the effectiveness of a home-based, caregiver-led individual cognitive stimulation therapy (iCST) program in (i) improving cognition and quality of life (QoL) for the person with dementia and (ii) mental and physical health (well-being) for the caregiver. Methods and findings A single-blind, pragmatic randomised controlled trial (RCT) was conducted at eight study sites across the United Kingdom. The intervention and blinded assessment of outcomes were conducted in participants’ homes. Three hundred fifty-six people with mild to moderate dementia and their caregivers were recruited from memory services and community mental health teams (CMHTs). Participants were randomly assigned to iCST (75, 30-min sessions) or treatment as usual (TAU) control over 25 wk. iCST sessions consisted of themed activities designed to be mentally stimulating and enjoyable. Caregivers delivering iCST received training and support from an unblind researcher. Primary outcomes were cognition (Alzheimer’s Disease Assessment Scale–cognitive [ADAS-Cog]) and self-reported QoL (Quality of Life Alzheimer’s Disease [QoL-AD]) for the person with dementia and general health status (Short Form-12 health survey [SF-12]) for the caregiver. Secondary outcomes included quality of the caregiving relationship from the perspectives of the person and of the caregiver (Quality of the Carer Patient Relationship Scale) and health-related QoL (European Quality of Life–5 Dimensions [EQ-5D]) for the caregiver. Intention to treat (ITT) analyses were conducted. At the post-test (26 wk), there were no differences between the iCST and TAU groups

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

PubMed

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

2014-08-01

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. Copyright © 2014 Elsevier Inc. All rights reserved.

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

Hattink, Bart; 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

2015-10-30

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. The objective of the current study was to evaluate the user friendliness, usefulness, and impact of STAR with informal caregivers, volunteers, and professional caregivers. 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. Secondary outcome measures

Does the organisational model of dementia case management make a difference in satisfaction with case management and caregiver burden? An evaluation study.

PubMed

Peeters, José M; Pot, Anne Margriet; de Lange, Jacomine; Spreeuwenberg, Peter M; Francke, Anneke L

2016-03-09

In the Netherlands, various organisational models of dementia case management exist. In this study the following four models are distinguished, based on differences in the availability of the service and in the case management function: Model 1: the case management service is available from first dementia symptoms + is always a separate specialist function; Model 2: the case management service is only available after a formal dementia diagnosis + is always a separate specialist function; Model 3: the case management service is available from first dementia symptoms + is often a combined function; Model 4: the case management service is only available after a formal dementia diagnosis + is often a combined function. The objectives of this study are to give insight into whether satisfaction with dementia case management and the development of caregiver burden depend on the organisational model. A survey was carried out in regional dementia care networks in the Netherlands among 554 informal carers for people with dementia at the start of case management (response of 85 %), and one year later. Descriptive statistics and multilevel models were used to analyse the data. The satisfaction with the case manager was high in general (an average of 8.0 within a possible range of 1 to 10), although the caregiver burden did not decrease in the first year after starting with case management. No differences were found between the four organisational models regarding the development of caregiver burden. However, statistically significant differences (p < 0.05) were found regarding satisfaction: informal carers in the organisational model where case management is only available after formal diagnosis of dementia and is often a combined function had on average the lowest satisfaction scores. Nevertheless, the satisfaction of informal carers within all organisational models was high (ranging from 7.51 to 8.40 within a range of 1 to 10). Organisational features of case management seem

Influence of neuroticism, ethnicity, familism, and social support on perceived burden in dementia caregivers: pilot test of the transactional stress and social support model.

PubMed

Shurgot, Gia Robinson; Knight, Bob G

2005-11-01

In this study we assessed the new transactional stress and social support model, postulating the role of neuroticism, ethnicity, familism, and social support in perceived burden in dementia caregivers. We used a convenience sample (N=77) of African American and White dementia caregivers. Results substantiated interrelationships among social support variables, and the influence of perceived positive social support on burden. Neuroticism was related to the perception of positive social support and burden. Results corroborated the model, focusing on neuroticism and quality of social support in modeling perceived burden in family caregivers. Findings call attention to the role of presumably long-standing individual differences in neuroticism that influence caregiver appraisals of stress and social support.

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…

What are the essential features of resilience for informal caregivers of people living with dementia? A Delphi consensus examination.

PubMed

Joling, Karlijn J; Windle, Gill; Dröes, Rose-Marie; Huisman, Martijn; Hertogh, Cees M P M; Woods, Robert T

2017-05-01

Few studies have examined what might enable or prevent resilience in carers of people with dementia. Consequently, there are limited insights as to how it should be understood, defined and measured. This creates challenges for research, and also practice in terms of how it might best be promoted. This study aimed to address these limitations and add new insights, identifying the essential features of resilience in dementia caregiving. A Delphi consensus study was conducted, consulting a multi-disciplinary panel of informal caregivers and experts with relevant professional expertise. Panellists rated the relevance of various statements addressing essential components of resilience; 'adversity' and 'successful caregiving' on a 5-point Likert scale. Based on the median and Inter Quartile Range, the most relevant statements with moderate consensus were proposed in Round 2 in which panellists selected up to five statements in order of importance. Moderate consensus was reached for all statements after two rounds. Patients' behavioural problems and feeling competent as a caregiver were selected by both caregivers and professionals as essential resilience features. Caregivers also emphasized the importance of social support, the quality of the relationship with their relative and enjoying spending time together. Professionals considered coping skills, experiencing positive aspects of caregiving, and a good quality of life of caregivers most relevant. The essential elements of resilience selected from multiple stakeholder perspectives can be used to select appropriate outcomes for intervention studies and give guidance to policy to support caregivers more effectively and better tailored to their needs.

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 Central

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

2016-01-01

Among over 5 million 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 6 months compared to a control group intervention. Occupational therapists deliver 8 in-home sessions over 3 months 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 6 months. Secondary outcomes assess quality of life of persons with dementia, other behaviors, burden and confidence of caregivers, and cost effectiveness. If benefits are supported, this activity intervention will provide a clinically meaningful approach to prevent, reduce, and manage NPS. PMID:27339865

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. Copyright © 2016 Elsevier Inc. All rights reserved.

End-of-life decision making by family caregivers of persons with advanced dementia: A literature review of decision aids.

PubMed

Xie, Bo; Berkley, Amy S; Kwak, Jung; Fleischmann, Kenneth R; Champion, Jane Dimmitt; Koltai, Kolina S

2018-01-01

To investigate existing knowledge in the literature about end-of-life decision making by family caregivers of persons with dementia, focusing on decision aids for caregivers of persons with advanced dementia, and to identify gaps in the literature that can guide future research. A literature review through systematic searches in PubMed, CINAHL Plus with Full Text, and PsycINFO was conducted in February 2018; publications with full text in English and published in the past 10 years were selected in multiple steps. The final sample included five decision aids with predominantly Caucasian participants; three of them had control groups, and three used audiovisual technology in presenting the intervention materials. No other technology was used in any intervention. Existing interventions lacked tailoring of information to caregivers' preferences for different types and amounts of information necessary to make decisions consistent with patients' values. Research is needed in exploring the use of technology in decision aids that could provide tailored information to facilitate caregivers' decision making. More diverse samples are needed.

The occurrence and persistence of thoughts of suicide, self-harm and death in family caregivers of people with dementia: a longitudinal data analysis over 2 years.

PubMed

Joling, Karlijn J; O'Dwyer, Siobhan T; Hertogh, Cees M P M; van Hout, Hein P J

2018-02-01

Family caregivers of people with dementia often report high levels of stress and depression, but little is known about those who contemplate suicide or self-harm. This study explores thoughts of suicide, self-harm and death in dementia caregivers and investigates the characteristics that distinguish them from those without such thoughts. Data were collected every 3 months, for 24 months, from 192 family caregivers of people with dementia living in the Netherlands. Caregivers did not have a clinical depression or anxiety disorder at baseline. Suicide-related thoughts were measured with an item from the Mini International Neuropsychiatric Interview, a diagnostic instrument for DSM-IV mental disorders. Fisher exact, analysis of variance or Kruskal-Wallis tests compared the characteristics of caregivers who had contemplated suicide with two comparison groups. Within 24 months, 76 caregivers reported symptoms of a potential depression and were further assessed for suicidal thoughts. Nine carers (11.8%, 4.7% of the total sample) reported suicidal thoughts with three of those at multiple points. Caregivers with suicidal thoughts had more severe depressive and anxious symptoms, had a lower sense of competence and mastery, felt less happy and experienced more health problems, less family support and more feelings of loneliness than caregivers who had not. Suicidal thoughts are present in dementia caregivers and can persist across the care trajectory. Various psychological and social characteristics significantly distinguish caregivers with suicidal thoughts from those without. More research is needed to enable the identification of high-risk caregivers and provide an evidence base for the development of preventive strategies and interventions. © 2017 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd. © 2017 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd.

The occurrence and persistence of thoughts of suicide, self‐harm and death in family caregivers of people with dementia: a longitudinal data analysis over 2 years

PubMed Central

O'Dwyer, Siobhan T.; Hertogh, Cees M.P.M.; van Hout, Hein P.J.

2017-01-01

Objective Family caregivers of people with dementia often report high levels of stress and depression, but little is known about those who contemplate suicide or self‐harm. This study explores thoughts of suicide, self‐harm and death in dementia caregivers and investigates the characteristics that distinguish them from those without such thoughts. Methods Data were collected every 3 months, for 24 months, from 192 family caregivers of people with dementia living in the Netherlands. Caregivers did not have a clinical depression or anxiety disorder at baseline. Suicide‐related thoughts were measured with an item from the Mini International Neuropsychiatric Interview, a diagnostic instrument for DSM‐IV mental disorders. Fisher exact, analysis of variance or Kruskal–Wallis tests compared the characteristics of caregivers who had contemplated suicide with two comparison groups. Results Within 24 months, 76 caregivers reported symptoms of a potential depression and were further assessed for suicidal thoughts. Nine carers (11.8%, 4.7% of the total sample) reported suicidal thoughts with three of those at multiple points. Caregivers with suicidal thoughts had more severe depressive and anxious symptoms, had a lower sense of competence and mastery, felt less happy and experienced more health problems, less family support and more feelings of loneliness than caregivers who had not. Conclusion Suicidal thoughts are present in dementia caregivers and can persist across the care trajectory. Various psychological and social characteristics significantly distinguish caregivers with suicidal thoughts from those without. More research is needed to enable the identification of high‐risk caregivers and provide an evidence base for the development of preventive strategies and interventions. © 2017 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd. PMID:28379646

A pilot study on the use of tracking technology: feasibility, acceptability, and benefits for people in early stages of dementia and their informal caregivers.

PubMed

Pot, Anne Margriet; Willemse, Bernadette M; Horjus, Sarah

2012-01-01

Caregivers and clinicians may be confronted with the dilemma whether to allow people in early stages of dementia to go outside independently with the risk of getting lost, or to limit their autonomy and mobility. Newly available technology may offer a solution. This pilot study is focused on the feasibility, acceptability, and effectiveness of a three-month use of Global Positioning System (GPS) by care receivers and caregivers. Numbers and percentages of participants with positive responses to self-report questions were calculated. Differences between the pre- and post-test scores of role-overload and worry were tested with paired t-tests and effect-sizes were calculated. Of the 33 dyads of care receivers and caregivers, 28 remained in the study (dropout rate 15%). The majority of the caregivers was able to use the technology and integrate the use into their daily routines and would recommend the use of GPS. Almost half of the participants with dementia experienced more freedom and were less worried when they were outside unaccompanied, a quarter mentioned that they were more outside independently and a fifth that they had less conflicts with their caregiver after three months. Caregivers showed a trend to feel less worried, especially caregivers who could reach their relative using the telephone connection. No changes in caregivers' feelings of role-overload were found. The GPS device used in this study seems to be promising for people in early stages of dementia and their informal caregivers. A next step is to carry out a randomized controlled trial.

Diurnal salivary alpha-amylase dynamics among dementia family caregivers.

PubMed

Liu, Yin; Granger, Douglas A; Kim, Kyungmin; Klein, Laura C; Almeida, David M; Zarit, Steven H

2017-02-01

The study examined diurnal regulation of salivary alpha-amylase (sAA) in association with daily stressors, adult day services (ADS) use, and other caregiving characteristics. A sample of 165 family caregivers of individuals with dementia (IWD) completed an 8-day diary study. Caregivers provided 5 saliva samples across the 8 days. On some days, caregivers provided all or most of the care. On other days, their relative attended ADS for part of the day. A 3-level unconditional linear spline model was fit to describe the typical sAA diurnal rhythms. Predictors were then added to the unconditional model to test the hypotheses on ADS use and daily stressors. Daily ADS use did not have an effect on diurnal sAA regulation. However, controlling for daily ADS use, greater ADS use over the 8 days was associated with a more prominent rise between 30 min after wake-up and before lunch, and a more prominent decline between before lunch and late afternoon. Fewer ADS days were associated with a more flattened sAA diurnal rhythm. Additionally, greater daily care-related stressor exposures had a within-person association with lower sAA levels in the late afternoon. Care-related stressor exposures had significant within- and between-person associations with sAA diurnal slopes. Furthermore, daily positive experiences had a significant between-person association with sAA diurnal slopes. Caring for a disabled family member may heighten the vulnerability to potential physiological conditions. Respite from care stressors from ADS use may have some biobehavioral benefits on sAA regulations. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

"I Treat Him as a Normal Patient": Unveiling the Normalization Coping Strategy Among Formal Caregivers of Persons With Dementia and Its Implications for Person-Centered Care.

PubMed

Bentwich, Miriam Ethel; Dickman, Nomy; Oberman, Amitai; Bokek-Cohen, Ya'arit

2017-11-01

Currently, 47 million people have dementia, worldwide, often requiring paid care by formal caregivers. Research regarding family caregivers suggests normalization as a model for coping with negative emotional outcomes in caring for a person with dementia (PWD). The study aims to explore whether normalization coping mechanism exists among formal caregivers, reveal differences in its application among cross-cultural caregivers, and examine how this coping mechanism may be related to implementing person-centered care for PWDs. Content analysis of interviews with 20 formal caregivers from three cultural groups (Jews born in Israel [JI], Arabs born in Israel [AI], Russian immigrants [RI]), attending to PWDs. We extracted five normalization modes, revealing AI caregivers had substantially more utterances of normalization expressions than their colleagues. The normalization modes most commonly expressed by AI caregivers relate to the personhood of PWDs. These normalization modes may enhance formal caregivers' ability to employ person-centered care.

Impact of caring for persons with Alzheimer's disease or dementia on caregivers' health outcomes: findings from a community based survey in Japan.

PubMed

Goren, Amir; Montgomery, William; Kahle-Wrobleski, Kristin; Nakamura, Tomomi; Ueda, Kaname

2016-06-10

This study assessed how family caregivers for patients with Alzheimer's disease (AD) or dementia in Japan differed from non-caregivers in characteristics and health outcomes (i.e., comorbidities, health-related quality of life [HRQoL], productivity, and resource use). Caregivers were hypothesized to experience significantly poorer outcomes than non-caregivers. Data were combined from the 2012 and 2013 National Health and Wellness Survey in Japan (n = 60000). Caregivers for adult relatives with AD or dementia were compared with non-caregivers on: comorbidities (including Patient Health Questionnaire (PHQ-9) cutoff scores suggesting presence/absence of major depressive disorder (MDD)), Work Productivity and Activity Impairment (WPAI), SF-36v2-based HRQoL, and healthcare resource utilization. Sociodemographic characteristics, health characteristics and behaviors, and Charlson comorbidity index (CCI) scores were compared across groups. Propensity matching, based on scores generated from a logistic regression predicting caregiving, was used to match caregivers with non-caregivers with similar likelihood of being caregivers. Bivariate comparisons across matched groups served to estimate outcomes differences due to caregiving. Among 55060 respondents, compared with non-caregivers (n = 53758), caregivers (n = 1302) were older (52.6 vs. 47.5 years), more frequently female (53 % vs. 49 %), married/partnered, frequent alcohol drinkers, current smokers, exercisers, and not employed, and they averaged higher CCI scores (0.37 vs. 0.14), all p < 0.05. Propensity scores incorporated sex, age, body mass index (BMI), exercise, alcohol, smoking, marital status, CCI, insured status, education, employment, income, and children in household. A greedy matching algorithm produced 1297 exact matches, excluding 5 non-matched caregivers. Health utilities scores were significantly lower among caregivers (0.724) vs. non-caregivers (0.764), as were SF-36v2 Physical and Mental

[Development and Effects of a Coping Skill Training Program for Caregivers in Feeding Difficulty of Older Adults with Dementia in Long-Term Care Facilities].

PubMed

Hong, Hyun Hwa; Gu, Mee Ock

2018-04-01

We developed and tested the effects of a coping skill training program for caregivers in feeding difficulty among older adults with dementia in long-term care facilities. A non-equivalent control group pretest-posttest design was used. The subjects comprised 34 caregivers (experimental group: 17, control group: 17) and 40 older adults with dementia (experimental group: 20, control group: 20). The developed program was delivered in 4-hour sessions over 6 weeks (including 2 weeks of lectures and lab practice on feeding difficulty coping skills, and 4 weeks of field practice). Data were collected before, immediately after, and 4 weeks after the program (January 3 to April 6, 2016). The data were analyzed using t-test and repeated measures ANOVA using SPSS/WIN 20.0. Compared to their counterparts in the control group, caregivers in the experimental group showed a significantly greater improvement in feeding knowledge and feeding behavior, while older adults with dementia showed greater improvements in feeding difficulty and Body Mass Index. The study findings indicate that this coping skill training program for caregivers in feeding difficulty is an effective intervention for older adults with dementia in long-term care facilities. © 2018 Korean Society of Nursing Science.

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