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'The hard thing is the changes': the importance of continuity for older men caring for their wives
- Authors:
- SANDBERG Jonas, ERIKSSON Henrik
- Journal article citation:
- Quality in Ageing, 8(2), June 2007, pp.5-15.
- Publisher:
- Pier Professional
- Place of publication:
- Brighton
This study aimed to provide an understanding of the experience of older men as caregivers for an ill spouse. Interviews were conducted with three older men between 65 and 78 years, who had been caring for their wives for between one and 12 years. Two main categories emerged: taking on a new and unfamiliar role, and learning to live with the new role. The results also show how the men seek to maintain continuity in their relationships with the wives they are caring for. The findings can be understood in the light of a major life transition of how older men providing care for a spouse create new roles and how they cope with the changes in the marital relationship. A sense of continuity in the process of caring is important for men to help them find the strength to continue as caregivers.
Building on the benefits: assessing satisfaction and well-being in elder care
- Authors:
- JENSEN Christine J., FERRARI Michael, CAVANAUGH John C.
- Journal article citation:
- Ageing International, 29(1), Winter 2004, pp.88-110.
- Publisher:
- Springer
- Place of publication:
- New York
One hundred interviews were conducted with primary caregivers who completed the Caregiver Well-Being Scale (CWB), the Caregiving Uplifts Scale (CUPL), the Caregiving Satisfaction Scale (CSS), and the Center for Epidemiologic Studies Depression Scale. CWB, CUPL and CSS scores were significantly higher for caregivers for elders with a primarily physical (e.g. heart disease) rather than a primarily cognitive impairment (e.g. dementia), indicating greater perceived caregiver benefits based on type of care recipient impairment. Little evidence of depressive symptoms was found in either group. These findings advance previous research by indicating that caregivers experience satisfaction in their role and potential for personal fulfillment even when faced with challenging circumstances. Discusses validation of positive experiences and the impact of positive appraisals on depression levels.
Older persons' perceptions of the quality of their human support systems
- Authors:
- HAWLEY P., CHAMLEY J.D.
- Journal article citation:
- Ageing and Society, 6(3), 1986, pp.295-312.
- Publisher:
- Cambridge University Press
A small-scale survey showing the diversity of existing relationships.
Providing informal care next to paid work: explaining care-giving gratification, burden and stress among older workers
- Authors:
- GRUNWALD Olga, DAMMAN Marleen, HENKENS Kene
- Journal article citation:
- Ageing and Society, 41(10), 2021, pp.2280-2298.
- Publisher:
- Cambridge University Press
With an increasing retirement age, more older adults are combining employment with informal care-giving responsibilities. However, little is known about how older workers experience care-giving activities next to their paid jobs. This study aims to fill this gap by examining how the work situation (i.e. working hours, occupational status and perceived access to human resources practices) is associated with feelings of gratification, burden and stress in care-giving. Using data from the NIDI Pension Panel Survey, we study care-giving experiences – in other words, the extent to which care-giving activities are gratifying, burdensome or stressful – of 1,651 Dutch older workers (age 60–65) who provide care at least once per week. Multivariate analyses reveal that the work situation plays an explanatory role next to socio-demographic factors and indicators of the care-giving situation. Working care-givers who feel they have access to phased retirement and organisational health support experience care-giving as relatively less burdensome and stressful. Moreover, those with access to phased retirement experience relatively higher levels of gratification in care-giving. Our findings suggest that the availability of organisational support relates to lower levels of care-giving burden and stress, and to some extent to higher levels of gratification. Organisations thus play an important role in facilitating the combination of work and care-giving obligations in a context of longer working lives. (Edited publisher abstract)
Live-in versus live-out home care in Israel: satisfaction with services and caregivers’ outcomes
- Authors:
- AYALON Liat, GREEN Ohad
- Journal article citation:
- Gerontologist, 55(4), 2015, pp.628-642.
- Publisher:
- Oxford University Press
Purpose: This study provides a preliminary examination of the relationship between the type of home care services (live-in vs. live-out; i.e., round the clock vs. several hours per week), the caregiver’s satisfaction with services, and the caregiver’s burden, distress, well-being, and subjective health status within a conceptual framework of caregiving outcomes. Design and Methods: A random stratified sample of family caregivers of older adults more than the age of 70 who receive live-in (442) or live-out (244) home care services through the financial assistance of the National Insurance institute of Israel was selected. A path analysis was conducted. Results: Satisfaction with services was higher among caregivers under the live-in home care arrangement and positively related to well-being. Among caregivers, live-in home care was directly associated with higher levels of subjective health and indirectly associated with better well-being via satisfaction with services. Implications: The study emphasises the potential benefits of live-in home care services for caregivers of older adults who suffer from high levels of impairment and the importance of assessing satisfaction with services as a predictor of caregivers’ outcomes. (Edited publisher abstract)
"You don't stop the worrying": the difficulties of caring in later life
- Author:
- INDEPENDENT AGE
- Publisher:
- Independent Age
- Publication year:
- 2015
- Pagination:
- 40
- Place of publication:
- London
Drawing on findings from focus groups and interviews with older carers, this report explores their experience of caring, what issues most concern them, where they find support in their caring, and what more support is needed. Older carers agreed that caring took a heavy toll on them, and had multiple impacts on their quality of life. It was clear that carers perceived that some of the impacts of caring were exacerbated by their age. Particular impacts affecting older carers included: difficulties keeping up with family and friends; financial constraints; poor health; and stress. They identified a range of gaps in support available to them, problems accessing services and a lack of support from the wider community in their role as carers. ‘Former carers’ made clear that there were important differences between the experiences of those whose loved ones moved into residential care or supported / independent living, and those who were bereaved. The report sets out older carers’ priorities, which include: improving carers’ access to support, in particular by ensuring GPs play a part in identifying carers and signposting to support; addressing inadequacies in care and support services available to carers’ loved ones; developing a ‘carers’ friend’ service to provide one-to-one practical and emotional support for carers; and improving support for bereaved carers, offering them opportunities to find mutual support among those with similar experiences. (Edited publisher abstract)
Patient and proxy measurement of quality of life among general hospital in-patients with dementia
- Authors:
- SHEEHAN Bart D., et al
- Journal article citation:
- Aging and Mental Health, 16(5), July 2012, pp.603-607.
- Publisher:
- Taylor and Francis
The study examined quality of life ratings among people with varying severity of dementia and their carers, recruited in a general hospital setting in England. Participants included 109 people with dementia, and their carers, from psychiatric referrals of inpatients in two general hospitals in England. For patients, data were gathered on quality of life using QoL-AD and EQ5-D, and depressive symptoms, and carer data was gathered on patient quality of life (Proxy QoL-AD and EQ5-D), severity of dementia, activities of daily living, physical illness and depressive symptoms, and on carer stress. Findings revealed that patients rated their quality of life more highly than carers on Qol-AD and on EQ5D. For carers, only more severe dementia was associated with ratings. Lower patient EQ-5D scores were independently associated only with carer stress. Lower patient QoL-AD scores were associated with patient depression, impaired activities of daily living and carer psychiatric symptoms. The authors concluded that patients and carers appeared to have very different concepts of quality of life in dementia. Implications for practice are discussed.
Customers' experiences of contact with the Pension, Disability and Carers Service
- Authors:
- WHITFIELD Grahame, et al
- Publisher:
- Great Britain. Department for Work and Pensions
- Publication year:
- 2011
- Pagination:
- 63p., bibliog.
- Place of publication:
- London
This report highlights findings from a research project investigating the circumstances surrounding the ways in which people who were customers of both The Pension Service (TPS) and the Disability and Carers Service (DCS) came into contact with the agency’s services. It was commissioned by the Pension, Disability and Carers Service. In depth interviews were held with men and women, 60 and older, drawn from the DCS customer database. Three discussion groups were also held. The report examines ways to overcome the barriers people experience in becoming aware of and contacting the service, making claims and in understanding the information provided and required by PDCS. It also examines how to harness the key role of family/friends and local partners in raising awareness among, and providing support to, older people in accessing services. Finally, the report outlines ways to better understand and respond to customers’ preferences and needs, and to manage and meet customers’ expectations of the service.
Unpaid older carers: the backbone of community care - what community care?
- Authors:
- DILLENBURGER Karola, MCKERR Lyn
- Journal article citation:
- Generations Review, 19(3), July 2009, Online only
- Publisher:
- British Society of Gerontology
A recent study conducted in Northern Ireland asked older parents who care for their sons and daughters with disabilities at home about their experiences. This article highlights some of their responses. Recommendations for policy makers are included.
What do people value when they provide unpaid care for an older person?: a meta-ethnography with interview follow-up
- Authors:
- AL-JANABI Hareth, COAST Joanna, FLYNN Terry N.
- Journal article citation:
- Social Science and Medicine, 67(1), July 2008, pp.111-121.
- Publisher:
- Elsevier
Government policies to shift care into the community and demographic changes mean that unpaid (informal) carers will increasingly be relied on to deliver care, particularly to older people. As a result, careful consideration needs to be given to informal care in economic evaluations. Current methods for economic evaluations may neglect important aspects of informal care. This paper reports the development of a simple measure of the caring experience for use in economic evaluations. A meta-ethnography was used to reduce qualitative research to six conceptual attributes of caring. Sixteen semi-structured interviews were then conducted with carers of older people to check the attributes and develop them into the measure. Six attributes of the caring experience comprise the final measure: getting on, organisational assistance, social support, activities, control, and fulfilment. The final measure (the Carer Experience Scale) focuses on the process of providing care, rather than health outcomes from caring. Arguably this provides a more direct assessment of carers' welfare. Following work to test and scale the measure, it may offer a promising way of incorporating the impact on carers in economic evaluations.