Development of support networks in informal dementia care: Guided, organic, and chance routes through support

Canadian Journal on Aging

Volumn 31, Issue 4, 2012, Pages 445-455

  Egdell, Valerie ^a  

^a EDINBURGH NAPIER UNIVERSITY   (United Kingdom)

Author keywords

Aging; Caregivers; Caregiving; Dementia; Social support

Indexed keywords

ADULT; AGED; ARTICLE; CAREGIVER; DEMENTIA; FEMALE; HUMAN; MALE; MIDDLE AGED; SOCIAL SUPPORT;

ADULT; AGED; CAREGIVERS; DEMENTIA; FEMALE; HUMANS; MALE; MIDDLE AGED; SOCIAL SUPPORT;

EID: 84871326899     PISSN: 07149808     EISSN: 17101107     Source Type: Journal    
DOI: 10.1017/S0714980812000323     Document Type: Article

References (57)

1. 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, S128 - 137. doi:10.1093/geronb/59.3.S128 .
2. Alzheimer's Disease International. (2009). World Alzheimer report. London, UK : Alzheimer's Disease International.
3. Alzheimer's Society. (2011). Community care assessment. Fact sheet 418. Retrieved from http://alzheimers.org.uk/site/scripts/documents-info.php? documentID=131.
4. 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 .
5. Arksey, H., & Glendinning, C. (2007). Choice in the context of informal caregiving. Health & Social Care in the Community, 15, 165 - 175. doi:10.1111/j.1365-2524.2006.00671.x .
6. Barber, B., Daley, S., & O'Brien, J. (2005). Dementia. In L. Keith, M. Rees. & T. Mander (Eds.), Menopause, postmenopause and ageing (pp. 20 - 34). London, UK : Royal Society of Medicine Press Ltd .
7. Beard, R.L., & Fox, P.J. (2008). Resisting social disenfranchisement: Negotiating collective identities and everyday life with memory loss. Social Science & Medicine, 66, 1509 - 1520. doi:10.1016/j.socscimed.2007.12.024 .
8. 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, 20 - 26. doi:10.1177/ 153331759901400101 .
9. 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, 387- 396. doi:10.1046/j.1365-2524.2003.00440.x .
10. Bywaters, P., & Harris, A. (1998). Supporting carers: Is practice still sexist? Health & Social Care in the Community, 6, 458 - 463. doi:10.1046/j.1365-2524.1998.00134.x .
11. Carpentier, N., & Ducharme, F. (2005). Support network transformations in the first stages of the caregiver's career. Qualitative Health Research, 15, 289 - 311. doi:10.1177/1049732304270813 .
12. 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, 103 - 115. doi:10.1353/cja.2008.0024 .
13. 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. R esearch on Aging, 3 0, 334 - 357. doi:10.1177/0164027507312113 .
14. Connidis, I. (2001). Family ties and aging. Thousand Oaks, CA : Sage
15. 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, 229 - 238. doi:10.1016/j.jaging.2007.06. 002 .
16. Corner, L., & Bond, J. (2004). Being at risk of dementia: Fears and anxieties of older adults. Journal of Aging Studies, 18, 143 - 155 doi:0.1016/j.jaging.2004.01.007 .
17. 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, 87 - 100 .
18. Department of Health. (1990). National health service and community care act 1990. London, UK : Department of Health .
19. Department of Health. (2009). Living well with dementia: A national dementia strategy. London, UK : Department of Health .
20. 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, 525-531. doi:10.1080/13607860600638024 .
21. 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, 101 - 107 .
22. Fast, J., Keating, N.C., Derksen, L., & Otfinowski, P. (2004). Characteristics of family/friend care networks of frail seniors. Canadian Journal on Aging, 23, 5 - 19. doi:10.1353/cja.2004.0003 .
23. 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, 25 - 32 .
24. 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, 38 - 59 .
25. 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, 318 - 328. doi:10.1177/1084822310384920 .
26. Gilbert, T., & Powell, J.L. (2005). Family, caring and ageing in the United Kingdom. Scandinavian Journal of Caring Sciences, 19, 53 - 57. doi:10.1111/j.1471-6712.2004.00313.x .
27. 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 .
28. 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 .
29. 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, 149 - 159. doi:10.1080/02650530120090601 .
30. Hong, S.-I., Hasche, L., & Lee, M.J. (2011). Service use barriers differentiating care-givers' service use patterns. Ageing and Society, 31, 1307 - 1329. doi:10.1017/S0144686X10001418 .
31. Hughes, J.C., Louw, S.J., & Sabat, S.R. (2006). Seeing whole. In J.C. Hughes, S.J. Louw & S.R. Sabat (Eds.), Dementia. Mind, meaning, and the person (pp. 1 - 39). Oxford : Oxford University Press
32. 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, 307 - 314 .doi:10.1016/j.pec.2007.03.014 .
33. Keating, N., & Dosman, D. (2009). Social capital and the care networks of frail seniors. Canadian Review of Sociology, 46, 301 - 318. doi:10.1111/j.1755-618X.2009.01216.x .
34. 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, 115 - 127. doi:10.1017/S0144686X02008954 .
35. 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
36. Knapp, M., Prince, M., Albanese, E., Banerjee, S., Dhanasiri, S., Fernandez, J.-L., et al. (2007). Dementia UK. London, UK : Alzheimer's Society .
37. 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, 240 - 246 .doi:10.1192/bjp.bp.107.045187 .
38. Levin, E., Sinclair, I., & Gorbach, P. (1989). Families, services and confusion in old age. Avebury : Gower Publishing. Lewis, J. (1993). Developing the mixed economy of care - emerging issues for voluntary organisations. Journal of Social Policy, 22, 173-192. doi:10.1017/S0047279400019292.
39. 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, 333 - 341. doi:10.1046/j.1365-2524.1999.00195.x .
40. Lipsky, M. (1980). Street level bureaucracy: Dilemmas of the individual in public services. New York, NY : Russell Sage Foundation .
41. 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 .
42. Neufeld, A., & Kushner, K.E. (2009). Men family caregivers' experience of nonsupportive interactions: Context and expectations. J ournal of Family Nursing, 15, 171 - 197. doi:10.1177/1074840709331643 .
43. Oliver, J. (1983). The caring wife. In J. Finch & D. Groves (Eds.), A labour of love: women, work and caring (pp. 72-88). London : Routledge and Kegan Paul .
44. 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.
45. 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, 359 - 370. doi:10.1017/S0714980809990195 .
46. Rabiee, P., Moran, N., & Glendinning, C. (2009). Individual budgets: Lessons from early users' experiences. British Journal of Social Work, 39, 918 - 935. doi:10.1093/bjsw/bcm152 .
47. 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, 17 - 37. doi:10.1177/1471301208099051 .
48. 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. A geing and Society, 3 2, 196 - 218. doi:10.1017/S0144686X11000195 .
49. 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, 335 - 351. doi:10.1177/026101839901900303 .
50. Strauss, A., & Corbin, J. (1990). Basics of qualitative research. Grounded theory procedures and techniques. Newbury Park, CA : SAGE Publications .
51. Strauss, A., & Corbin, J. (1998). Basics of qualitative research. Techniques and procedures for developing grounded theory. Thousand Oaks, CA : SAGE Publications .
52. Twigg, J., & Atkin, K. (1994). Carers perceived. Policy and practice in informal care. Buckingham, UK : Open University Press .
53. Waite, J., Harwood, R., Morton, I., & Connelly, D. (2009). Dementia care. A practical manual. Oxford : Oxford University Press .
54. Walters, K., Iliffe, S., & Orrell, M. (2001). An exploration of help-seeking behaviour in older people with unmet needs. Family Practice, 18, 277-282. doi:10.1093/fampra/18.3.277 .
55. Wenger, G. (1992). Help in old age: Facing up to change. A longitudinal network study. Liverpool : Liverpool University Press .
56. Wenger, G. (1997). Social networks and the prediction of elderly people at risk. Aging and Mental Health, 1, 311-320. doi:10.1080/13607869757001 .
57. Wimo, A., & Prince, M. (2010). World Alzheimer report 2010. The global economic impact of dementia. London: Alzheimer's Disease International .