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Development of Support Networks in Informal Dementia Care: Guided, Organic, and Chance Routes through Support*

Published online by Cambridge University Press:  01 October 2012

Valerie Egdell*
Affiliation:
Edinburgh Napier University
*
Correspondence and requests for offprints should be sent to / La correspondance et les demandes de tirés-à-part doivent être adressées à: Valerie Egdell, Ph.D. Employment Research Institute Edinburgh Napier University Craiglockhart Campus Edinburgh EH14 1DJ United Kingdom ([email protected])

Abstract

ABSTRACT

Increasing knowledge about factors that shape the development of care networks for people with dementia is imperative in countries with aging populations that are relying increasingly on informal care. This study used a qualitative approach to identify the complex routes through support taken by informal caregivers for people with dementia in the development of their care networks. Interview data were collected from 13 caregivers. Three routes through support were identified: guided routes, organic routes, and chance routes. This article’s principal argument is that these routes are the outcomes not only of the resources that caregivers draw upon, but also of their varying expectations regarding the role of the informal caregiver. The identification of the three routes through support provides a potentially valuable framework for examining the experiences of caregivers for individuals with other long-term health conditions.

Résumé

RÉSUMÉ

Accroître les connaissances sur le développement de réseaux de soins pour personnes atteintes de démence est impératif dans les pays avec des populations vieillissantes avec l’augmentation de la dépendance sur les soins informels. Cette étude a utilisé une approche qualitative pour identifier les voies complexes prises par les aidants naturels de personnes atteintes de démence dans le développement de leurs réseaux de soins. Elle a examiné les données d’entrevue de 13 aidants naturels de personnes atteintes de démence. Trois chemins ont été identifiés: Les chemins guidés, les chemins organiques, et les chemins de chance. L’argument principal de cet article est que ces chemins résultent, non seulement des ressources que les aidants naturels peuvent utiliser, mais également des espérances variables du rôle des aidants naturels. En outre, les résultats fournissent un cadre potentiel pour examiner les expériences des aidants naturels qui s’occupent de personnes atteintes d’autres maladies chroniques.

Type
Articles
Copyright
Copyright © Canadian Association on Gerontology 2012 

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Footnotes

*

This article draws on findings of a Ph.D. study hosted by the Geography Department and the Institute of Health and Society at Newcastle University, United Kingdom. The study was jointly funded by the Economic and Social Research Council and the Medical Research Council (PTA-037-2006-00003). I thank my Ph.D. supervisors Helen Jarvis, John Bond, Katie Brittain, and Ian McKeith for their invaluable support in this study. Thanks go, as well, to all the research participants and the gatekeeper groups.

References

Aboderin, I. (2004). Decline in material family support for older people in urban Ghana, Africa: Understanding processes and causes of change. Journals of Gerontology Series B: Psychological Sciences & Social Sciences, 59B, S128137. doi: 10.1093/geronb/59.3.S128.CrossRefGoogle Scholar
Alzheimer’s Disease International. (2009). World Alzheimer report. London, UK: Alzheimer’s Disease International.Google Scholar
Alzheimer’s Society. (2011). Community care assessment. Fact sheet 418. Retrieved from http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=131.Google Scholar
Aneshensel, C.S., Pearlin, L.I., Mulla, J.T., Zarit, S.H., & Whitlatch, C.J. (1995). Profiles in caregiving: The unexpected career. San Diego, CA: Academic Press.Google Scholar
Arksey, H., & Glendinning, C. (2007). Choice in the context of informal caregiving. Health & Social Care in the Community, 15, 165175. doi: 10.1111/j.1365-2524.2006.00671.x.Google Scholar
Barber, B., Daley, S., & O’Brien, J. (2005). Dementia. In Keith, L., Rees, M.. & Mander, T. (Eds.), Menopause, postmenopause and ageing (pp. 2034). London, UK: Royal Society of Medicine Press Ltd.Google Scholar
Beard, R.L., & Fox, P.J. (2008). Resisting social disenfranchisement: Negotiating collective identities and everyday life with memory loss. Social Science & Medicine, 66, 15091520. doi: 10.1016/j.socscimed.2007.12.024.CrossRefGoogle ScholarPubMed
Boise, L., Morgan, D.L., Kaye, J., & Camicioli, R. (1999). Delays in the diagnosis of dementia: Perspectives of family caregivers. American Journal of Alzheimer’s Disease and Other Dementias, 14, 2026. doi: 10.1177/153331759901400101.CrossRefGoogle Scholar
Bowes, A., & Wilkinson, H. (2003). ‘We didn’t know it would get that bad’: South Asian experiences of dementia and the service response. Health & Social Care in the Community, 11, 387396. doi: 10.1046/j.1365-2524.2003.00440.x.CrossRefGoogle ScholarPubMed
Bywaters, P., & Harris, A. (1998). Supporting carers: Is practice still sexist? Health & Social Care in the Community, 6, 458463. doi: 10.1046/j.1365-2524.1998.00134.x.CrossRefGoogle ScholarPubMed
Carpentier, N., & Ducharme, F. (2005). Support network transformations in the first stages of the caregiver’s career. Qualitative Health Research, 15, 289311. doi: 10.1177/1049732304270813.CrossRefGoogle ScholarPubMed
Carpentier, N. & Ducharme, F. (2007). Social network data validity: The example of the social network of caregivers of older persons with Alzheimer-type dementia. Canadian Journal on Aging, 26, 103115. doi: 10.1353/cja.2008.0024.CrossRefGoogle ScholarPubMed
Carpentier, N., Ducharme, F., Kergoat, M.-J., & Bergman, H. (2008). Social representations of barriers to care early in the careers of caregivers of persons with Alzheimer’s disease. Research on Aging, 30, 334357. doi: 10.1177/0164027507312113.CrossRefGoogle Scholar
Connidis, I. (2001). Family ties and aging. Thousand Oaks, CA: Sage.Google Scholar
Connidis, I.A., & Kemp, C.L. (2008). Negotiating actual and anticipated parental support: Multiple sibling voices in three-generation families. Journal of Aging Studies, 22, 229238. doi: 10.1016/j.jaging.2007.06.002.CrossRefGoogle Scholar
Corner, L., & Bond, J. (2004). Being at risk of dementia: Fears and anxieties of older adults. Journal of Aging Studies, 18, 143155. doi: 0.1016/j.jaging.2004.01.007.CrossRefGoogle Scholar
Croog, S.H., Burleson, J.A., Sudilovsky, A., & Baume, R.M. (2006). Spouse caregivers of Alzheimer patients: Problem responses to caregiver burden. Aging & Mental Health, 10, 87100.CrossRefGoogle ScholarPubMed
Department of Health. (1990). National health service and community care act 1990. London, UK: Department of Health.Google Scholar
Department of Health. (2009). Living well with dementia: A national dementia strategy. London, UK: Department of Health.Google Scholar
Derksen, E., Vernooij-Dassen, M., Gillissen, F., Rikkert, M.O., & Scheltens, P. (2006). Impact of diagnostic disclosure in dementia on patients and carers: Qualitative case series analysis. Aging & Mental Health, 10, 525531. doi: 10.1080/13607860600638024.CrossRefGoogle ScholarPubMed
Egdell, V., Bond, J., Brittain, K., & Jarvis, H. (2010). Disparate routes through support: Negotiating the sites, stages and support of informal dementia care. Health & Place, 16, 101107.CrossRefGoogle ScholarPubMed
Fast, J., Keating, N.C., Derksen, L., & Otfinowski, P. (2004). Characteristics of family/friend care networks of frail seniors. Canadian Journal on Aging, 23, 519. doi: 10.1353/cja.2004.0003.CrossRefGoogle ScholarPubMed
Fiori, K.L., Antonucci, T.C., & Cortina, K.S. (2006). Social network typologies and mental health among older adults. Journals of Gerontology Series B: Psychological Sciences & Social Sciences, 61B, 2532.CrossRefGoogle Scholar
Forbes, D.A., Jansen, S.L., Markle-Reid, M., Hawranik, P., Morgan, D., Henderson, S., et al. . (2008). Gender differences in use and availability of home and community-based services for people with dementia. Canadian Journal of Nursing Research, 40, 3859.Google ScholarPubMed
Funk, L.M., Stajduhar, K.I., & Cloutier-Fisher, D. (2011). Exploring family caregivers’ rationales for nonuse of formal home health services when caring for a dying family member. Home Health Care Management & Practice, 23, 318328. doi: 10.1177/1084822310384920.CrossRefGoogle Scholar
Gilbert, T., & Powell, J.L. (2005). Family, caring and ageing in the United Kingdom. Scandinavian Journal of Caring Sciences, 19, 5357. doi: 10.1111/j.1471-6712.2004.00313.x.CrossRefGoogle ScholarPubMed
Glendinning, C., Arksey, H., Jones, K., Moran, N., Netten, A., & Rabiee, P. (2009). The individual budgets pilot projects: Impact and outcomes for carers. York, UK: Social Policy Research Unit, University of York.Google Scholar
Glendinning, C., Challis, D., Fernandez, J.-L., Jacobs, S., Jones, K., Knapp, M., et al. . (2008). Evaluation of the individual budgets pilot programme, summary report. York, UK: Social Policy Research Unit, University of York.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, 149159. doi: 10.1080/02650530120090601.CrossRefGoogle Scholar
Hong, S.-I., Hasche, L., & Lee, M.J. (2011). Service use barriers differentiating care-givers’ service use patterns. Ageing and Society, 31, 13071329. doi: 10.1017/S0144686X10001418.CrossRefGoogle Scholar
Hughes, J.C., Louw, S.J., & Sabat, S.R. (2006). Seeing whole. In Hughes, J.C., Louw, S.J. & Sabat, S.R. (Eds.), Dementia. Mind, meaning, and the person (pp.139). Oxford: Oxford University Press.Google Scholar
Karnieli-Miller, O., Werner, P., Aharon-Peretz, J., & Eidelman, S. (2007). Dilemmas in the (un)veiling of the diagnosis of Alzheimer’s disease: Walking an ethical and professional tight rope. Patient Education and Counseling, 67, 307314. doi: 10.1016/j.pec.2007.03.014.CrossRefGoogle ScholarPubMed
Keating, N., & Dosman, D. (2009). Social capital and the care networks of frail seniors. Canadian Review of Sociology, 46, 301318. doi: 10.1111/j.1755-618X.2009.01216.x.CrossRefGoogle ScholarPubMed
Keating, N., Otfinowski, P., Wenger, C., Fast, J., & Derksen, L. (2003). Understanding the caring capacity of informal networks of frail seniors: A case for care networks. Ageing and Society, 23, 115127. doi: 10.1017/S0144686X02008954.CrossRefGoogle Scholar
Knapp, M., Commas-Herrera, A., Somani, A., & Banerjee, S. (2007). Dementia: International comparisons. Summary report for the national audit office. London, UK: 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.Google Scholar
Knapp, M., Prince, M., Albanese, E., Banerjee, S., Dhanasiri, S., Fernandez, J.-L., et al. . (2007). Dementia UK. London, UK: Alzheimer’s Society.Google Scholar
Lawrence, L., Murray, J., Samsi, K., & 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, 240246. doi: 10.1192/bjp.bp.107.045187.CrossRefGoogle ScholarPubMed
Levin, E., Sinclair, I., & Gorbach, P. (1989). Families, services and confusion in old age. Avebury: Gower Publishing.Google Scholar
Lewis, J. (1993). Developing the mixed economy of care - emerging issues for voluntary organisations. Journal of Social Policy, 22, 173192. doi: 10.1017/S0047279400019292.CrossRefGoogle Scholar
Lewis, J. (1999). The concepts of community care and primary care in the UK: The 1960s to the 1990s. Health & Social Care in the Community, 7, 333341. doi: 10.1046/j.1365-2524.1999.00195.x.CrossRefGoogle Scholar
Lipsky, M. (1980). Street level bureaucracy: Dilemmas of the individual in public services. New York, NY: Russell Sage Foundation.Google Scholar
Mason, S.E., McShane, R., & Ritchie, C.W. (2010). Diagnostic tests for Alzheimer’s disease: Rationale, methodology, and challenges. International Journal of Alzheimer’s Disease vol. 2010, Article ID 972685, 6 pages, doi: 10.4061/2010/972685.Google ScholarPubMed
Neufeld, A., & Kushner, K.E. (2009). Men family caregivers’ experience of nonsupportive interactions: Context and expectations. Journal of Family Nursing, 15, 171197. doi: 10.1177/1074840709331643.CrossRefGoogle ScholarPubMed
Oliver, J. (1983). The caring wife. In Finch, J. & Groves, D. (Eds.), A labour of love: women, work and caring (pp. 7288). London: Routledge and Kegan Paul.Google Scholar
Pacolet, J., Bouten, R., Lanoye, H., & Versieck, K. (2000). Social protection for dependency in old age: A study of the fifteen EU member states and Norway. Aldershot, UK: Ashgate.Google Scholar
Ploeg, J., Denton, M., Tindale, J., Hutchison, B., Brazil, K., Akhtar-Danesh, N., et al. . (2009). Older adults’ awareness of community health and support services for dementia care. Canadian Journal on Aging, 28, 359370. doi: 10.1017/S0714980809990195.CrossRefGoogle ScholarPubMed
Rabiee, P., Moran, N., & Glendinning, C. (2009). Individual budgets: Lessons from early users’ experiences. British Journal of Social Work, 39, 918935. doi: 10.1093/bjsw/bcm152.CrossRefGoogle Scholar
Robinson, A., Elder, J., Emden, C., Lea, E., Turner, P., & Vickers, J. (2009). Information pathways into dementia care services: Family carers have their say. Dementia, 8, 1737. doi: 10.1177/1471301208099051.CrossRefGoogle Scholar
Robinson, A., Lea, E., Hemmings, L., Vosper, G., McCann, D., Weeding, F., et al. . (2012). Seeking respite: Issues around the use of day respite care for the carers of people with dementia. Ageing and Society, 32, 196218. doi: 10.1017/S0144686X11000195.CrossRefGoogle Scholar
Rummery, K., & Glendinning, C. (1999). Negotiating needs, access and gatekeeping: Developments in health and community care policies in the UK and the rights of disabled and older citizens. Critical Social Policy, 19, 335351. doi: 10.1177/026101839901900303.CrossRefGoogle Scholar
Strauss, A., & Corbin, J. (1990). Basics of qualitative research. Grounded theory procedures and techniques. Newbury Park, CA: SAGE Publications.Google Scholar
Strauss, A., & Corbin, J. (1998). Basics of qualitative research. Techniques and procedures for developing grounded theory. Thousand Oaks, CA: SAGE Publications.Google Scholar
Twigg, J., & Atkin, K. (1994). Carers perceived. Policy and practice in informal care. Buckingham, UK: Open University Press.Google Scholar
Waite, J., Harwood, R., Morton, I., & Connelly, D. (2009). Dementia care. A practical manual. Oxford: Oxford University Press.Google Scholar
Walters, K., Iliffe, S., & Orrell, M. (2001). An exploration of help-seeking behaviour in older people with unmet needs. Family Practice, 18, 277282. doi: 10.1093/fampra/18.3.277.CrossRefGoogle ScholarPubMed
Wenger, G. (1992). Help in old age: Facing up to change. A longitudinal network study. Liverpool: Liverpool University Press.Google Scholar
Wenger, G. (1997). Social networks and the prediction of elderly people at risk. Aging and Mental Health, 1, 311320. doi: 10.1080/13607869757001.CrossRefGoogle Scholar
Wimo, A., & Prince, M. (2010). World Alzheimer report 2010. The global economic impact of dementia. London: Alzheimer’s Disease International.Google Scholar