Hostname: page-component-78c5997874-lj6df Total loading time: 0 Render date: 2024-11-03T03:20:14.607Z Has data issue: false hasContentIssue false
  • English
  • Français

Who cares? Managing obligation and responsibility across the changing landscapes of informal dementia care

Published online by Cambridge University Press:  30 April 2012

VALERIE EGDELL
VALERIE EGDELL*
Affiliation:
Employment Research Institute, Edinburgh Napier University, Edinburgh, UK.
*
Address for correspondence: Valerie Egdell, Employment Research Institute, Edinburgh Napier University, Craiglockhart Campus, Edinburgh EH14 1DJ, UK. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

This paper explores the different ways in which informal carers for people with dementia negotiate their care-giving role across the changing organisational and spatial landscape of care. In-depth qualitative data are used to argue that the decisions of carers are socially situated and the result of negotiations involving individuals, families and wider cultural expectations. These decisions affect where care occurs. In addressing these issues this paper draws attention to the lack of choice some carers may have in taking on the care-giving role; how and why carers draw upon support; and the different expectations of the care-giver's capabilities across the different sites of care, specifically at home and in nursing homes. It concludes that research and policy attention should focus on how the expectations about the role and abilities of carers are affected by where, and how, care is delivered. In doing so this paper contributes to the emerging health geography literature on care-giving as well as developing the spatial perspective in the established gerontological literature.

Keywords

informal caredementialandscapes of careobligationresponsibility
Type
Articles
Information
Ageing & Society , Volume 33 , Issue 5 , July 2013 , pp. 888 - 907
Copyright
Copyright © Cambridge University Press 2012 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Aboderin, I. 2004. Decline in material family support for older people in urban Ghana, Africa: understanding processes and causes of change. Journal of Gerontology: Social Sciences, 59B, 3, S128–37.CrossRefGoogle Scholar
Aneshensel, C. S., Pearlin, L. I., Mulla, J. T., Zarit, S. H. and Whitlatch, C. J. 1995. Profiles in Caregiving. The Unexpected Career. Academic Press, San Diego, California.Google Scholar
Arksey, H. and Glendinning, C. 2007. Choice in the context of informal caregiving. Health and Social Care in the Community, 15, 2, 165–75.Google Scholar
Barlow, A. and Duncan, S. 2000 a. New Labour's communitarianism, supporting families and the ‘rationality mistake’: part II. Journal of Social Welfare and Family Law, 22, 2, 129–43.Google Scholar
Barlow, A. and Duncan, S. 2000 b. Supporting families? New Labour's communitarianism and the ‘rationality mistake’: part I. Journal of Social Welfare and Family Law, 22, 1, 23–42.Google Scholar
Barlow, A., Duncan, S. and James, G. 2002. New Labour, the rationality mistake and family policy in Britain. In Carling, A., Duncan, S. and Edwards, R. (eds), Analysing Families. Morality and Rationality in Policy and Practice. Routledge, London.Google Scholar
Bertrand, R. M., Fredman, L. and Saczynski, J. 2006. Are all caregivers created equal? Stress in caregivers to adults with and without dementia. Journal of Aging and Health, 18, 4, 534–51.CrossRefGoogle ScholarPubMed
Brodaty, H., Thomson, C., Thompson, C. and Fine, M. 2005. Why caregivers of people with dementia and memory loss don't use services. International Journal of Geriatric Psychiatry, 20, 6, 537–46.Google Scholar
Brown Wilson, C., Davies, S. and Nolan, M. 2009. Developing personal relationships in care homes: realising the contributions of staff, residents and family members. Ageing & Society, 29, 7, 1041–63.Google Scholar
Buhr, G. T., Kuchibhatla, M. and Clipp, E. C. 2006. Caregivers’ reasons for nursing home placement: clues for improving discussions with families prior to the transition. The Gerontologist, 46, 1, 52–61.CrossRefGoogle ScholarPubMed
Bywaters, P. and Harris, A. 1998. Supporting carers: is practice still sexist? Health and Social Care in the Community, 6, 6, 458–63.Google Scholar
Charmaz, K. 2006. Constructing Grounded Theory. A Practical Guide Through Qualitative Analysis. Sage Publications, London.Google Scholar
Clipp, E. and George, L. 1993. Dementia and cancer: a comparison of spouse caregivers. The Gerontologist, 33, 4, 534–41.Google Scholar
Connidis, I. 2001. Family Ties and Aging. Sage, Thousand Oaks, California.Google Scholar
Corner, L. and Bond, J. 2004. Being at risk of dementia: fears and anxieties of older adults. Journal of Aging Studies, 18, 2, 143–55.Google Scholar
Daatland, S. O. 2001. Ageing, families and welfare systems: comparative perspectives. Zeitschrift für Gerontologie und Geriatrie, 34, 1, 16–20.Google Scholar
Davies, J. and Gregory, D. 2007. Entering the dialogue: marriage biographies and dementia care. Dementia, 6, 4, 481–8.Google Scholar
Davies, S. and Nolan, M. 2004. ‘Making the move’: relatives’ experiences of the transition to a care home. Health and Social Care in the Community, 12, 6, 517–26.Google Scholar
Denton, M., Ploeg, J., Tindale, J., Hutchison, B., Brazil, K., Akhtar-Danesh, N., Quinlan, M., Lillie, J., Millen Plenderleith, J. and Boos, L. 2008. Where would you turn for help? Older adults’ awareness of community support services. Canadian Journal on Aging, 27, 4, 359–70.Google Scholar
Department of Health 1990. National Health Service and Community Care Act 1990. HMSO, London.Google Scholar
Dyck, I., Kontos, P., Angus, J. and McKeever, P. 2005. The home as a site for longterm care: meanings and management of bodies and spaces. Health and Place, 11, 2, 173–85.Google Scholar
Egdell, V., Bond, J., Brittain, K. and Jarvis, H. 2010. Disparate routes through support: negotiating the sites, stages and support of informal dementia care. Health and Place, 16, 1, 101–7.Google Scholar
Finch, J. 1989. Family Obligations and Social Change. Polity Press, Cambridge.Google Scholar
Folbre, N. 2001. The Invisible Heart: Economics and Family Values. New Press, New York.Google Scholar
Gans, D., and Silverstein, M. 2006. Norms of filial responsibility for aging parents across time and generations. Journal of Marriage and Family, 68, 4, 961–76.Google Scholar
Gesler, W. 1996. Lourdes: healing in a place of pilgrimage. Health and Place, 2, 2, 95–105.Google Scholar
Hellström, I., Nolan, M. and Lundh, U. 2005. ‘We do things together’: a case study of ‘couplehood’ in dementia. Dementia, 4, 1, 7–22.Google Scholar
Henderson, J. 2001. ‘He's not my carer – he's my husband’: personal and policy constructions of care in mental health. Journal of Social Work Practice, 15, 2, 149–59.Google Scholar
Hirst, M. 2001. Trends in informal care in Great Britain during the 1990s. Health and Social Care in the Community, 9, 6, 348–57.Google Scholar
Isaksen, L. W. 2002. Toward a sociology of gendered disgust: images of bodily decay and the social organization of care work. Journal of Family Issues, 23, 7, 791–811.Google Scholar
Jacelon, C. S. and Imperio, K. 2005. Participant diaries as a source of data in research with older adults. Qualitative Health Research, 15, 7, 991–7.Google Scholar
Jarvis, H. 2007. Home truths about care-less competitiveness. International Journal of Urban and Regional Research, 31, 1, 207–14.Google Scholar
Johnson, J. and Bytheway, B. 2001. An evaluation of the use of diaries in a study of medication in later life. International Journal of Social Research Methodology, 4, 3, 183–204.Google Scholar
Kane, N. M. and Saltman, R. B. 1997. Comparative experience in home care and pharmaceutical policy. Health Policy, 41, supplement 1, S1–7.Google Scholar
Katbamna, S., Ahmad, W., Bhakta, P., Baker, R. and Parker, G. 2004. Do they look after their own? Informal support for South Asian carers. Health and Social Care in the Community, 12, 5, 398–406.Google Scholar
Knapp, M., Commas-Herrera, A., Somani, A. and Banerjee, S. 2007 a. Dementia: International Comparisons. Summary Report for the National Audit Office. Personal Social Services Research Unit, London School of Economics and Political Science and Section of Mental Health and Ageing, The Institute of Psychiatry, King's College London, London.Google Scholar
Knapp, M., Prince, M., Albanese, E., Banerjee, S., Dhanasiri, S., Fernandez, J.-L., Ferri, C., McCrone, P., Snell, T. and Stewart, R. 2007 b. Dementia UK. Alzheimer's Society, London.Google Scholar
Lawrence, L., Murray, J., Samsi, K. and Banerjee, S. 2008. Attitudes and support needs of Black Caribbean, south Asian and White British carers of people with dementia in the UK. The British Journal of Psychiatry, 193, 3, 240–6.Google Scholar
Lewis, J. 1993. Developing the mixed economy of care – emerging issues for voluntary organizations. Journal of Social Policy, 22, 2, 173–92.Google Scholar
Lewis, R. 1998. The impact of the marital relationship on the experience of caring for an elderly spouse with dementia. Ageing & Society, 18, 2, 209–31.Google Scholar
Lloyd, L. 2000. Caring about carers: only half the picture? Critical Social Policy, 20, 1, 136–50.Google Scholar
Luescher, K. and Pillemer, K. 1998. Intergenerational ambivalence: a new approach to the study of parent–child relations in later life. Journal of Marriage and the Family, 60, 2, 413–25.Google Scholar
Mackenzie, J. 2006. Stigma and dementia: East European and South Asian family carers negotiating stigma in the UK. Dementia, 5, 2, 233–47.CrossRefGoogle Scholar
McDowell, L. 2004. Work, workfare, work/life balance and an ethic of care. Progress in Human Geography, 28, 2, 145–63.Google Scholar
Merz, E.-M., Consedine, N. S., Schulze, H.-J. and Schuengel, C. 2009. Wellbeing of adult children and ageing parents: associations with intergenerational support and relationship quality. Ageing & Society, 29, 5, 783–802.Google Scholar
Milligan, C. 2001. Geographies of Care, Space, Place and the Voluntary Sector. Ashgate Publishing, Burlington, Vermont.Google Scholar
Milligan, C. 2005. From home to ‘home’: situating emotions within the caregiving experience. Environment and Planning A, 37, 12, 2105–20.Google Scholar
Milligan, C. 2009. There's No Place Like Home: Place and Care in an Ageing Society. Ashgate Publishing, Farnham, UK.Google Scholar
Milligan, C. and Wiles, J. 2010. Landscapes of care. Progress in Human Geography, 34, 6, 736–54.Google Scholar
Neufeld, A. and Kushner, K. E. 2009. Men family caregivers’ experience of nonsupportive interactions: context and expectations. Journal of Family Nursing, 15, 2, 171–97.Google Scholar
Oliver, J. 1983. The caring wife. In Finch, J. and Groves, D. (eds), A Labour of Love: Women, Work and Caring. Routledge and Kegan Paul, London, 72–88.Google Scholar
Pacolet, J., Bouten, R., Lanoye, H. and Versieck, K. 2000. Social Protection for Dependency in Old Age: A Study of the Fifteen EU Member States and Norway. Ashgate, Aldershot, UK.Google Scholar
Parker, G. 1993. With This Body. Caring and Disability in Marriage. Open University Press, Buckingham, UK.Google Scholar
Peace, S. 1993. The living environments of older women. In Bernard, M. and Meade, K. (eds), Women Come of Age: Perspectives on the Lives of Older Women. Edward Arnold, London, 126–45.Google Scholar
Phillips, J., Bernard, M., Phillipson, C. and Ogg, J. 2000. Social support in later life: a study of three areas. British Journal of Social Work, 30, 6, 837–53.Google Scholar
Pickard, S. 2010. The ‘good carer’: moral practices in late modernity. Sociology, 44, 3, 471–87.Google Scholar
Pillemer, K., Suitor, J. J., Mock, S. E., Sabir, M. and Sechrist, J. 2007. Capturing the complexity of intergenerational relations: exploring ambivalence within later-life families. Journal of Social Issues, 63, 4, 775–91.Google Scholar
Rees Jones, I., Hyde, M., Victor, C., Wiggins, R., Gilleard, C. and Higgs, P. 2008. Ageing in a Consumer Society. From Passive to Active Consumption in Britain. Policy Press, Bristol, UK.Google Scholar
Rose, H. and Bruce, E. 1995. Mutual care but differential esteem: caring between older couples. In Arber, S. and Ginn, J. (eds), Connecting Gender and Ageing: A Sociological Approach. Open University Press, Buckingham, UK, 114–28.Google Scholar
Russell, R. 2007. The work of elderly men caregivers – from public careers to an unseen world. Men and Masculinities, 9, 3, 298–314.Google Scholar
Ryan, A. A. and Scullion, H. F. 2000. Family and staff perceptions of the role of families in nursing homes. Journal of Advanced Nursing, 32, 3, 626–34.Google Scholar
Sevenhuijsen, S. 1998. Citizenship and the Ethics of Care. Feminist Considerations on Justice, Morality and Politics. Routledge, London.Google Scholar
Strauss, A. and Corbin, J. 1990. Basics of Qualitative Research. Grounded Theory Procedures and Techniques. Sage Publications, Newbury Park, California.Google Scholar
Strauss, A. and Corbin, J. 1998. Basics of Qualitative Research. Techniques and Procedures for Developing Grounded Theory. Sage Publications, Thousand Oaks, California.Google Scholar
Symonds, A. 1998 a. The social construction of public care: from community care to care by the state. In Symonds, A. and Kelly, A. (eds), The Social Construction of Community Care. Macmillan, Basingstoke, UK, 18–32.Google Scholar
Symonds, A. 1998 b. The social reconstruction of care: from the state to the ‘community’. In Symonds, A. and Kelly, A. (eds), The Social Construction of Community Care. Macmillan, Basingstoke, UK, 33–50.Google Scholar
Tesco, Alzheimer's Society and Alzheimer's Scotland. 2011. Mapping the Dementia Gap. Alzheimer's Society, London.Google Scholar
Twigg, J. and Atkin, K. 1994. Carers Perceived. Policy and Practice in Informal Care. Open University Press, Buckingham, UK.Google Scholar
Whitaker, A. 2009. Family involvement in the institutional eldercare context. Towards a new understanding. Journal of Aging Studies, 23, 3, 158–67.Google Scholar
Willcocks, D., Peace, S. and Kellaher, L. 1987. Private Lives in Public Places: A Research-based Critique of Residential Life in Local Authority Old People's Homes. Tavistock, London.Google Scholar
Willson, A. E., Shuey, K. M. and Elder, G. H. Jr. 2003. Ambivalence in the relationship of adult children to aging parents and in-laws. Journal of Marriage and Family, 65, 4, 1055–72.Google Scholar
Willyard, J., Miller, K., Shoemaker, M. and Addison, P. 2008. Making sense of sibling responsibility for family caregiving. Qualitative Health Research, 18, 12, 1673–86.Google Scholar
Yantzi, N. M. and Rosenberg, M. W. 2008. The contested meanings of home for women caring for children with long-term care needs in Ontario, Canada. Gender, Place and Culture, 15, 3, 301–15.Google Scholar