This study represents the experiences of informal carers of people with dementia concerning periods of transition into formal care. Retrospective interviews with 18 carers identified the key narratives: ‘This is why I had to’, ‘They said I need to’ and ‘It was a last resort’. These indicate a sense of carers’ responsibility in decision making and the undesirable assumptions around the move. However, the narrative of ‘I made the right decision’ was common after transition. Findings represent the nuanced carer experience around transitions, providing insight into the experiences of families living with dementia and informing future care planning.
Abey-Nesbit, R., Van Doren, S., Ahn, S., Iheme, L., Peel, N.M., Declercq, A., Hirdes, J., Allore, H. and Jamieson, H.A. (2022) Factors associated with caregiver distress among home care clients in New Zealand: evidence based on data from interRAI Home Care Assessment, Australasian Journal on Ageing, 41(2): 237–46. doi: 10.1111/ajag.13011
Alzheimers New Zealand (2015) Achieving a Dementia Friendly New Zealand: Alzheimers NZ Strategy 2015–2025, Wellington, New Zealand: Alzheimers New Zealand.
Beattie, E., Fielding, E., O’Reilly, M., Brooks, D., MacAndrew, M. and McCrow, J. (2018) Recruitment of individuals with dementia and their carers for social research: lessons learned from nine studies, Research in Gerontological Nursing, 11(3): 119–28. doi: 10.3928/19404921-20180308-01
Boogaard, J.A., Werner, P., Zisberg, A. and van der Steen, J.T. (2017) Examining trust in health professionals among family caregivers of nursing home residents with advanced dementia, Geriatrics and Gerontology International, 17(12): 2466–71. doi: 10.1111/ggi.13107
Broad, J.B., Ashton, T., Gott, M., McLeod, H., Davis, P.B. and Connolly, M.J. (2015) Likelihood of residential aged care use in later life: a simple approach to estimation with international comparison, Australian and New Zealand Journal of Public Health, 39(4): 374–9. doi: 10.1111/1753-6405.12374
Brodaty, H. and Donkin, M. (2009) Family caregivers of people with dementia, Dialogues in Clinical Neuroscience, 11(2): 217–28. doi: 10.31887/DCNS.2009.11.2/hbrodaty
Cheek, J., Ballantyne, A., Byers, L. and Quan, J. (2007) From retirement village to residential aged care: what older people and their families say, Health and Social Care in the Community, 15(1): 8–17.
Chene, B. (2006) Dementia and residential placement: a view from the carers’ perspective, Qualitative Social Work, 5(2): 187–215. doi: 10.1177/1473325006064257
Chiao, C.Y., Wu, H.S. and Hsiao, C.Y. (2015) Caregiver burden for informal caregivers of patients with dementia: a systematic review, International Nursing Review, 62(3): 340–50. doi: 10.1111/inr.12194
Connolly, M.J., Broad, J.B., Boyd, M., Kerse, N. and Gott, M. (2014) Residential aged care: the de facto hospice for New Zealand’s older people, Australasian Journal on Ageing, 33(2): 114–20. doi: 10.1111/ajag.12010
Couture, M., Ducharme, F. and Lamontagne, J. (2012) The role of health care professionals in the decision-making process of family caregivers regarding placement of a cognitively impaired elderly relative, Home Health Care Management and Practice, 24(6): 283–91. doi: 10.1177/1084822312442675
Cullum, S. et al. (2021) Predictors of aged residential care placement in patients newly diagnosed with dementia at a New Zealand memory service, Journal of Long-Term Care, 24–32. doi: 10.31389/jltc.46
De Vreese, L.P., Salvatore, L., Rovesta, L. and Fabbo, A. (2016) The management of dementia in primary care, in O. Capelli (ed) Primary Care in Practice: Integration is Needed, Coratia: Intech, pp 69–92.
Dyall, L. (2014) Dementia: continuation of health and ethnic inequalities in New Zealand, New Zealand Medical Journal, 127(1389): 68–81.
Dyall, L. et al. (2014) Cultural and social factors and quality of life of Māori in advanced age: Te puāwaitanga o ngā tapuwae kia ora tonu. Life and living in advanced age: a cohort study in New Zealand (LiLACS NZ), New Zealand Medical Journal, 127(1393): 62–79.
Eldernet (2022) How much does home help for those with high needs cost?, www.eldernet.co.nz/knowledge-lab/how-much-does-home-help-for-those-with-high-needs-cost.
Fitzpatrick, K. and Grace, M. (2019) Dementia patients’ transition to residential aged care: carers’ and social workers’ experiences, Australian Social Work, 72(3): 287–98. doi: 10.1080/0312407X.2018.1536155
Galbin, A. (2014) An introduction to social constructionism, Social Research Reports, 26: 82–92.
Gibson, R.H. and Gander, P.H. (2020) Factors associated with the sleep of carers: a survey of New Zealanders supporting a family member with cognitive impairment or dementia, Dementia, 20(3): 919–35. doi: 10.1177/1471301220915071
Grimmond, D. (2014) The economic value and impacts of informal care in New Zealand, report for Carers NZ and NZ Carers Alliance, Infometrics. https://cdn.auckland.ac.nz/assets/auckland/about-us/equity-at-the-university/equity-information-staff/information-for-carers/The%20economic%20value%20of%20informal%20care%20in%20New%20Zealand%20Final%20copy.pdf
Häikiö, K., Sagbakken, M. and Rugkåsa, J. (2019) Dementia and patient safety in the community: a qualitative study of family carers’ protective practices and implications for services, BMC Health Services Research, 19(1): 635.
Hall, Y., Greco, P., Hau, K. and Barak, Y. (2020) Older adults abuse: analysis of a New Zealand national dataset, International Psychogeriatrics, 32(8): 1003–8. doi: 10.1017/S1041610220001520
Horrell, B., Stephens, C. and Breheny, M. (2015) Capability to care: supporting the health of informal caregivers for older people, Health Psychology, 34(4): 339–48. doi: 10.1037/hea0000144
Jaye, C., Hale, B., Butler, M., McKechnie, R., Robertson, L., Simpson, J., Tordoff, J. and Young, J. (2015) One of us: stories from two New Zealand rest homes, Journal of Aging Studies, 35: 135–43. doi: 10.1016/j.jaging.2015.08.010
Jorgensen, D., Arksey, H., Parsons, M., Senior, H. and Thomas, D. (2009) Why do older people in New Zealand enter residential care rather than choosing to remain at home, and who makes that decision?, Ageing International, 34(1): 15–32. doi: 10.1007/s12126-009-9034-7
Jorgensen, D., Parsons, M., Jacobs, S. and Arksey, H. (2010) The New Zealand informal caregivers and their unmet needs, New Zealand Medical Journal, 123(1317): 9–16.
Lethin, C., Hallberg, I.R., Karlsson, S. and Janlöv, A.C. (2016) Family caregivers experiences of formal care when caring for persons with dementia through the process of the disease, Scandinavian Journal of Caring Sciences, 30(3): 526–34. doi: 10.1111/scs.12275
Löfqvist, C., Granbom, M., Himmelsbach, I., Iwarsson, S., Oswald, F. and Haak, M. (2013) Voices on relocation and aging in place in very old age – a complex and ambivalent matter, Gerontologist, 53(6): 919–27.
Ma’u, E., Cullum, S., Cheung, G., Livingston, P.G. and Mukadam, N. (2021) Differences in the potential for dementia prevention between major ethnic groups within one country: a cross sectional analysis of population attributable fraction of potentially modifiable risk factors in New Zealand, The Lancet Regional Health – Western Pacific, 13. https://doi.org/10.1016/j.lanwpc.2021.100191
McAdams, D.P. (2001) The psychology of life stories, Review of General Psychology, 5(2): 100–22. doi: 10.1037/1089-2680.5.2.100
McKechnie, R., Jaye, C., Hale, B., Tordoff, J., Robertson, L., Simpson, J. and Butler, M. (2018) Transition into care: experiences of the elderly as they move to residential aged care, Sites: A Journal of Social Anthropology and Cultural Studies, 15(2). doi: 10.11157/sites-id379.
Ministry of Health (2016) Healthy Ageing Strategy, Wellington: Ministry of Health.
Murray, M. (2000) Levels of narrative analysis in health psychology, Journal of Health Psychology, 5(3): 337–47. doi: 10.1177/135910530000500305
Nimmons, D., Manthorpe, J., West, E., Rait, G., Sampson, E.L., Iliffe, S. and Davies, N. (2023) Views of people living with dementia and their carers on their present and future: a qualitative study, BMC Palliative Care, 22(1): 38, doi: 10.1186/s12904-023-01165-w.
Osamor, P.E. and Grady, C. (2018) Autonomy and couples’ joint decision-making in healthcare, BMC Medical Ethics, 19(1). doi: 10.1186/s12910-017-0241-6
Prunty, M.M. and Foli, K.J. (2019) Guilt experienced by caregivers to individuals with dementia: a concept analysis, International Journal of Older People Nursing, 14(2). doi: 10.1111/opn.12227
Quinn, C., Pickett, J.A., Litherland, R., Morris, R.G., Martyr, A. and Clare, L. (on behalf of the IDEAL Programme Team) (2022) Living well with dementia: what is possible and how to promote it, International Journal of Geriatric Psychiatry, 37(1), doi: 10.1002/gps.5627.
Rose, K.M. and Lopez, R.P. (2012) Transitions in dementia care: theoretical support for nursing roles, Online Journal of Issues in Nursing, 17(2).
Royal Commission into Aged Care Quality and Safety (2021) Final Report: Care, Dignity and Respect, Canberra: Commonwealth of Australia.
Rozanova, J., Miller, E.A. and Wetle, T. (2016) Depictions of nursing home residents in US newspapers: successful ageing versus frailty, Ageing and Society, 36(1): 17–41. doi: 10.1017/S0144686X14000907
Ryan, A.A. and Scullion, H.F. (2000) Nursing home placement: an exploration of the experiences of family carers, Journal of Advanced Nursing, 32(5): 1187–95. doi: 10.1046/j.1365-2648.2000.01589.x
Samsi, K., Cole, L. and Manthorpe, J. (2022) ‘The time has come’: reflections on the ‘tipping point’ in deciding on a care home move, Aging and Mental Health, 26(9): 1855–61. doi: 10.1080/13607863.2021.1947963
Schluter, P.J. et al. (2016) Comprehensive clinical assessment of home-based older persons within New Zealand: an epidemiological profile of a national cross-section, Australian and New Zealand Journal of Public Health, 40(4): 349–55. doi: 10.1111/1753-6405.12525
Sinclair, C., Gersbach, K., Hogan, M., Bucks, R.S., Auret, K.A., Clayton, J.M., Agar, M. and Kurrle, S. (2018) How couples with dementia experience healthcare, lifestyle, and everyday decision-making, International Psychogeriatrics, 30(11): 1639–47. doi: 10.1017/S1041610218000741
Smith, L., Phillipson, L. and Knight, P. (2021) Re-imagining care transitions for people with dementia and complex support needs in residential aged care: using co-designed sensory objects and a focused ethnography to recognise micro transitions, Ageing and Society, doi: 10.1017/S0144686X2100043X.
Warburton, J. and Savy, P. (2012) The aged care sector: residential and community care, in E. Willis, L. Reynolds and H. Keleher (eds) Understanding the Australian Health Care System, Chatswood, Australia: Elsevier, pp 121–38.
Weatherall, M., Slow, T. and Wiltshire, K. (2004) Risk factors for entry into residential care after a support needs assessment, New Zealand Medical Journal, 117(1202).
Wong, G. and Breheny, M. (2018) Narrative analysis in health psychology: a guide for analysis, Health Psychology and Behavioral Medicine, 6(1): 245–61. doi: 10.1080/21642850.2018.1515017
Zegwaard, M.I., Aartsen, M.J., Grypdonck, M.H.F. and Cuijpers, P. (2017) Trust: an essential condition in the application of a caregiver support intervention in nursing practice, BMC Psychiatry, 17(1). doi: 10.1186/s12888-017-1209-2
May 2022 onwards | Past Year | Past 30 Days | |
---|---|---|---|
Abstract Views | 264 | 264 | 26 |
Full Text Views | 102 | 102 | 4 |
PDF Downloads | 171 | 171 | 8 |
Institutional librarians can find more information about free trials here