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Incremental patterns in the amount of informal and formal care among non-demented and demented elderly persons results from a 3-year follow-up population-based study
- Authors:
- WIMO A., et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 26(1), January 2011, pp.56-64.
- Publisher:
- Wiley
Against the assumption that care for older people includes complex interactions between formal services and informal care, this study aimed describe longitudinal patterns in formal and informal care given to older people with and without dementia. The older people studied (who were participating in a longitudinal population-based study on ageing and dementia called the Kungsholmen-Nordanstig Project) were aged 75 years and over, and living at home in a rural area in northern Sweden. They were clinically examined and interviewed at the baseline of the project and at follow-up approximately 3 years later. The researchers found that overall quantified informal care at follow-up for those still living at home was about 3 times larger than formal care. They also found that the amount of informal care was lower for people with dementia still living at home at follow-up than at baseline, probably due to effects such as institutionalisation and mortality, and that having mild cognitive decline and no home support at baseline had a strong association with receiving care or being dead at follow-up.
Effect of the Meeting Centres Support Program on informal carers of people with dementia: Results from a multi-centre study
- Authors:
- DROES R-M, et al
- Journal article citation:
- Aging and Mental Health, 10(2), March 2006, pp.112-124.
- Publisher:
- Taylor and Francis
Because of the complex nature of the problems that carers of persons with dementia encounter, several comprehensive support programs for carers were developed in the past decade. One such program is the Meeting Centres Support Program (MCSP) that integrates different types of support for persons with dementia and their carers, which have proved to be effective in practice and/or research. Within the framework of a study into the national implementation of the MCSP, it was investigated whether the positive effects found in carers that participated in the first Amsterdam Meeting Centres, were also achieved in other regions of The Netherlands. A pre-test–post-test control group design with matched groups was applied. In total, 94 carers in the MCSP in eight meeting centres and 34 carers of dementia patients who frequented regular psychogeriatric day care (PDC) in three nursing homes were included in the study. During the study period 23 carers of the MCSP group and 21 carers of the PDC group dropped out. At baseline and after seven months indicators of burden (psychological and psychosomatic symptoms, feelings of burden and time between start of support and institutionalization of the persons with dementia) were measured, as well as potential determinants of burden (sense of competence, coping strategies, experienced support, loneliness and the emotional impact of behaviour problems). Though on a group level no effect was found, either in psychological and psychosomatic symptoms or in the determinants of burden, a subgroup of carers who felt lonely (n?=?22) at baseline benefited significantly more from the MCSP than from PDC in terms of psychological and psychosomatic symptoms. A majority of MCSP carers (82.1%) experienced less burden and more professional support. After seven months significantly fewer persons with dementia in the MCSP (4%) were institutionalized as compared to the patients in PDC (29%). Patients in the MCSP participated for a longer period of time before institutionalization. Although the effect on sense of competence of carers that was found in the Amsterdam study was not found in this multi-centre study, the effect on burden and delayed institutionalization of the person with dementia were confirmed. The integrated MCSP also proved more effective than PDC in decreasing psychological and psychosomatic symptoms in lonely carers. Further dissemination of the MCSP is therefore recommended.
Depression and anxiety among partner and offspring carers of people with dementia: a systematic review
- Authors:
- WATSON Brittany, TATANGELO Gemma, MCCABE Marita
- Journal article citation:
- Gerontologist, 59(5), 2019, p.e597–e610.
- Publisher:
- Oxford University Press
Background and Objectives: Family carers of people with dementia (PWD) experience high rates of depression and anxiety. However, the factors that are associated with these mental health concerns among family carers are not well understood. The purpose of this review was to identify factors that are associated with depression and anxiety in family carers of PWD. Research Design and Methods: A systematic review was conducted of studies that examined depressive or anxiety symptoms among family caregivers of community-dwelling older adults with dementia. Twenty-six studies met inclusion criteria and were included in the review. Results: Depressive and anxiety symptoms were related to demographic factors, dementia characteristics, carer psychological and social factors, and dyadic relationship factors. Some prominent factors were consistently associated with depressive symptoms across studies. Female carers and adult–child carers, rather than spousal carers, were more likely to experience depressive symptoms. Carers’ coping strategies and activity restriction were also found to be strongly related to depressive symptoms. Severity of dementia-related problematic behaviours was related to carers’ depression and anxiety symptoms. In addition, relationship type and quality were important factors associated with depressive symptoms. Discussion and Implications: Several important risk factors for carer depression were highlighted in this review. However, a lack of measurement precision and a reliance on cross-sectional studies limits our understanding of exactly how depression and anxiety progress during the caregiving experience. The implications for prevention and intervention programs for depression and anxiety are discussed, as well as suggestions for future research to improve the quality of research in this area. (Edited publisher abstract)
Characteristics of the spouse caregiving experience: comparison between early- and late-onset dementia
- Authors:
- WAWRZICZNY Emilie, et al
- Journal article citation:
- Aging and Mental Health, 22(9), 2018, pp.1207-1215.
- Publisher:
- Taylor and Francis
Objectives: To investigate the characteristics of the caregiving experience according to age at onset of dementia to adapt support programmes. Method: 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. The authors compared the two groups according to age at onset of the disease using a multivariate test, Pillai's Trace test. Results: 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. Conclusion: The results suggest that programmes 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. (Edited publisher abstract)
A virtual reality intervention to improve the understanding and empathy for people with dementia in informal caregivers: results of a pilot study
- Authors:
- WIJMA Eva M., et al
- Journal article citation:
- Aging and Mental Health, 22(9), 2018, pp.1115-1123.
- Publisher:
- Taylor and Francis
Objective: 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. Methods: 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. Results: 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. Conclusion: 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. (Publisher abstract)
Mental health and physical health of family caregivers for persons with dementia: a comparison of African American and white caregivers
- Authors:
- KNIGHT B. G., et al
- Journal article citation:
- Aging and Mental Health, 11(5), September 2007, pp.538-546.
- Publisher:
- Taylor and Francis
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.
Depressive symptoms among spousal caregivers of institutionalised mates with Alzheimer's: boundary ambiguity and mastery as predictors
- Authors:
- KAPLAN Lori, BOSS Pauline
- Journal article citation:
- Family Process, 38(1), Spring 1999, pp.85-103.
- Publisher:
- Wiley
The goal of this study was to identify factors that predict whether or not community-dwelling spouses experience depressive symptoms upon institutionalisation of a mate with Alzheimer's Disease. If a goal is to keep caregivers health, then interventions and education about how to live with ambiguity and how to be masterful in spite of the ambiguous status of one's mate seem necessary. Clinical implications are discussed.
Social exclusion in adult informal carers: a systematic narrative review of the experiences of informal carers of people with dementia and mental illness
- Authors:
- GREENWOOD Nan, MEZEY Gillian, SMITH Raymond
- Journal article citation:
- Maturitas, 112, June 2018, pp.39-45.
- Publisher:
- Elsevier
Social exclusion has a negative impact on quality of life. People living with dementia or mental health disorders as well as informal carers have been separately described as socially excluded. The objective of this systematic narrative review was to examine the extent to which social exclusion experienced by adult informal carers of people living with dementia or severe mental health disorders has been identified and described in research literature. It synthesised qualitative and quantitative evidence and included the perspectives of carers themselves and of professionals. Eight electronic databases (1997-2017) were searched. Five relevant studies published between 2010 and 2016 were identified. All were qualitative and used interviews and focus groups. Study quality was variable and most were European. Two focused on carers of people living with dementia and three on carers of people with mental health disorders. Four investigated carers' perspectives and experiences of social exclusion directly (total of 137 carer participants, predominantly parents, spouses and adult children), while the fifth focused on the perceptions of 65 participants working in health and social care. Stigma, financial difficulties and social isolation were highlighted in four studies and the challenges for carers in engaging in leisure activities were described in the fifth. Most conceptualised social exclusion as a form of stigma, or as resulting from stigma. One presented social exclusion as an element of carer burden. Two explicitly discussed the negative effects of social exclusion on carers. The dearth of research and the lack of specificity about social exclusion in carers was surprising. Future research should investigate aspects of social exclusion that may adversely affect carer wellbeing. (Edited publisher abstract)
Gender effects on components of burden and depression among dementia caregivers
- Authors:
- PILLEMER Sarah, DAVIS Jennifer, TREMONT Geoffrey
- Journal article citation:
- Aging and Mental Health, 22(9), 2018, pp.1156-1161.
- Publisher:
- Taylor and Francis
Objective: Previous literature has examined burden and depression predominately as unitary constructs in relation to dementia caregiving. No studies thus far have examined gender differences in the specific components of burden and depression in dementia caregivers. The current study examined whether empirically validated dimensions of caregiver burden differed by gender for dementia caregivers. Methods: The sample consisted of 211 dementia caregivers enrolled in a longitudinal intervention study. Only baseline functioning was evaluated in this study. Levels of burden were assessed using the Zarit Burden Interview (ZBI), and levels of depression were assessed using the Center for Epidemiologic Studies Depression Scale (CES-D). Results: Factor analysis revealed three facets of burden: impact of caregiving on the caregivers’ lives, guilt, and frustration/embarrassment, and four facets of depression: depressed affect, somatic activity, positive affect, and interpersonal feelings. Overall burden (p < .001) and impact of caregiving on the caregivers’ life (p < .001) were significantly higher in females. Overall levels of depression (p = .018), somatic and retarded activity (p = .018), depressed affect (p = .005), and positive affect (p = .012) were significantly higher in females. Conclusions: Findings suggest that distressed male and female dementia caregivers experience caregiving differently. Results from this study could be used to identify gender-specific interventions related to subtypes of burden and depression to optimize quality of life for caregivers. (Publisher abstract)
Gratitude and coping among familial caregivers of persons with dementia
- Authors:
- LAU Bobo Hi-Po, CHENG Cecilia
- Journal article citation:
- Aging and Mental Health, 21(4), 2017, pp.445-453.
- Publisher:
- Taylor and Francis
Objectives: 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. Design: This study is the first to examine the associations among gratitude, coping strategies, psychological resources and psychological distress using a structural equation modelling approach. Results: 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). Conclusion: 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. (Publisher abstract)