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Typologies of dementia caregiver support networks: a pilot study
- Authors:
- FRIEDMAN Esther M, KENNEDY David P.
- Journal article citation:
- Gerontologist, 61(8), 2021, pp.1221-1230.
- Publisher:
- Oxford University Press
Background and Objectives: There are nearly 18 million family caregivers in the United States assisting an older adult in need of help. Identifying the caregivers in greatest need of support requires an understanding of the current social support networks available to family caregivers and whether specific groups of caregivers are at risk of having an insufficient support network. Research Design and Methods: the researchers collected personal network data from a nationally representative sample of 66 family caregivers to persons with dementia (PWDs) in the United States aged 18 and older, including information on network members’ support to the caregiver and help to the care recipient. Results: this study found four common caregiving network types: large networks with many helpers; large networks primarily supporting caregivers; small, dense networks supporting both caregivers and care recipient; and small networks providing little help to either caregiver or care recipient. Gender, income, and geographic proximity of caregiver to the care recipient were significantly associated with caregiver network type. Discussion and Implications: This study suggests that there are different types of care and support networks available to caregivers to PWDs, and that the size and structure of networks vary considerably among demographic groups. As the population ages, a better understanding of the supports available to caregivers will be crucial for ensuring that caregivers are adequately supported, and caregiving needs of families are met. (Edited publisher abstract)
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.
Care-giving in dementia: contours of a curriculum
- Author:
- MIESEN Bere
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 9(4), November 2010, pp.473-489.
- Publisher:
- Sage
The problems confronting people with dementia and their families are discussed, elaborating various factors that determine how they cope with the trauma of the disease. Against this background, the tasks for professional care-givers are then identified. The authors suggest that care-giving in dementia is a speciality that should be based on a high level of expertise and a professional approach. Core topics are then set out, forming the building blocks for a curriculum, with areas based on the relational perspective of caring for people with dementia. The authors conclude that to ensure a high standard of professional care-giving in dementia, such training is necessary as a life-long attachment alone is not enough.
The multiverse of inquiry: introduction to the special issue on 'dementia care and Chinese culture
- Authors:
- CHEN Hongtu, LEVKOFF Sue E.
- Journal article citation:
- Ageing International, 35(2), June 2010, pp.85-95.
- Publisher:
- Springer
- Place of publication:
- New York
It is well known from 30 years of research that dementia caregiving, regardless of geographical, educational and socioeconomic differences, causes physical, emotional and financial burdens to many caregiving families. What we do not know, however, is how dementia care should be provided in a transitioning society. This article describes how during this transition, traditional, family-based care for older people with chronic health problems and functional limitation is being challenged by a new, rapidly urbanising market-centred society. There is also a lack of knowledge about how to apply what is known about Western societies with Chinese culture. The article asks how we blend dementia caregiving burdens, theories and measures of psychological distress, and intervention strategies and models with the emerging understanding of Chinese values, coping styles, and resources with which people influenced by Chinese cultures engage in dementia care task. The article contains sections on: theoretical models of caregiver burden; evidence relevant to Chinese culture; the current approach and its challenges; and the future as a multiverse.
Family caregivers’ perceptions of maltreatment of older adults with dementia: findings from the northwest of Spain
- Authors:
- RIVERA-NAVARRO Jesus, CONTADOR Israel
- Journal article citation:
- Journal of Elder Abuse and Neglect, 31(1), 2019, pp.77-95.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Dementia is a neurocognitive disorder that implies a risk factor of maltreatment by family caregivers. In this study, the authors analyzed both informal caregiver’s perceptions of maltreatment and aspects of the caregiver and caregiving behaviour that may be associated with maltreatment. They conducted five focus groups (FGs) in three Spanish cities: Segovia, Soria and León. The themes that were identified were related to two levels of maltreatment: (a) relational and (b) institutional. At the relational level, the authors observed the justification of maltreatment of Older Adults with Dementia (OAswD) by family caregivers during the occurrence of behavioural symptoms. At the institutional level, the authors noted that lack of support from the government was considered a type of maltreatment. These themes suggest that policy issues related to healthcare should be considered. (Edited publisher abstract)
Investigating burden of informal caregivers in England, Finland and Greece: an analysis with the short form of the Burden Scale for Family Caregivers (BSFC-s)
- Authors:
- KONERDING Uwe, et al
- Journal article citation:
- Aging and Mental Health, 22(2), 2018, pp.280-287.
- Publisher:
- Taylor and Francis
Objectives: The burden of informal caregivers might show itself in different ways in different cultures. Understanding these differences is important for developing culture-specific measures aimed at alleviating caregiver burden. Hitherto, no findings regarding such cultural differences between different European countries were available. In this paper, differences between English, Finnish and Greek informal caregivers of people with dementia are investigated. Methods: A secondary analysis was performed with data from 36 English, 42 Finnish and 46 Greek caregivers obtained with the short form of the Burden Scale for Family Caregivers (BSFC-s). The probabilities of endorsing the BSFC-s items were investigated by computing a logit model with items and countries as categorical factors. Statistically significant deviation of data from this model was taken as evidence for country-specific response patterns. Results: The two-factorial logit model explains the responses to the items quite well (McFadden's pseudo-R-square: 0.77). There are, however, also statistically significant deviations (p < 0.05). English caregivers have a stronger tendency to endorse items addressing impairments in individual well-being; Finnish caregivers have a stronger tendency to endorse items addressing the conflict between the demands resulting from care and demands resulting from the remaining social life and Greek caregivers have a stronger tendency to endorse items addressing impairments in physical health. Conclusion: Caregiver burden shows itself differently in English, Finnish and Greek caregivers. Accordingly, measures for alleviating caregiver burden in these three countries should address different aspects of the caregivers’ lives. (Publisher abstract)
Dementia cafes: recommendations from interviews with informal carers
- Authors:
- AKHTAR Farrukh, et al
- Journal article citation:
- Working with Older People, 21(4), 2017, pp.236-242.
- Publisher:
- Emerald
Purpose: Dementia cafes (also known as Alzheimer’s or memory cafes) have been running in the UK since 2000. The purpose of this paper is to report on the recommendations from recent research that interviewed family carers on their experiences of using the cafes. Design/methodology/approach: The research was carried out in cafes in and around London, and focussed on informal, unpaid carers’ experiences of using them. In total, 11 carers from five different dementia cafes were interviewed, using semi-structured questionnaires. The results were thematically analysed. Findings: The findings showed that carers had an overwhelming appreciation of the cafes and what they offered, but several of the findings led to the recommendations about the recruitment and training of cafe co-ordinators; how cafes present themselves and their services and how they can offer dedicated support to informal carers. Originality/value: These recommendations will be of use to cafe organisers and commissioners, especially considering the dearth of information currently available in this area. (Publisher abstract)
Psychological well-being over time among informal caregivers caring for persons with dementia living at home
- Authors:
- LETHIN Connie, et al
- Journal article citation:
- Aging and Mental Health, 21(11), 2017, pp.1138-1146.
- Publisher:
- Taylor and Francis
Objectives: 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. Method: 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 standardised instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed. Results: 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. Conclusion: Informal caregiving for PwDs living at home is a complex task. The authors' 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. (Edited publisher abstract)
Burden of care, social support, and sense of coherence in elderly caregivers living with individuals with symptoms of dementia
- Authors:
- STENSLETTEN Kari, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 15(6), 2016, pp.1422-1435.
- Publisher:
- Sage
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. The authors 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. They used multiple regression analysis in a general linear model procedure. The authors 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. (Edited publisher abstract)
'Deferred or chickened out?’ decision making among male carers of people with dementia
- Authors:
- SAMPSON Michelle S., CLARK Andrew
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 15(6), 2016, pp.1605-1625.
- Publisher:
- Sage
In this paper, the authors present new insight into the ways in which carers of people with dementia make decisions in the context of seemingly declining autonomy and freedom associated with the condition. Their focus is on the ways in which carers reflect on decisions made in different temporal contexts (day-to-day, medium- and long term). Drawing on data and analysis from in-depth interviews with male informal carers of women with mild to moderate dementia living in the northwest of England, the authors outline how the decision-making process is dependent on the temporality of the decisions. Arguably unsurprisingly, the authors found that short-term or ‘day-to-day’ decisions were made with input from those cared for, while longer term decisions were deferred until a point when necessity meant carers had to make decisions themselves. However, and importantly, carers were aware of the implications of how they were making decision, including the potential impact in terms of partial withdrawal, or even full denial, of autonomy of those they care for. Consequently, the authors argue that carers adopt a form of practised autonomy to negotiate the complexity of everyday decision making while managing longer term uncertainty and anxiety. (Edited publisher abstract)