Hostname: page-component-78c5997874-ndw9j Total loading time: 0 Render date: 2024-11-17T19:31:35.573Z Has data issue: false hasContentIssue false
  • English
  • Français

Do services meet the needs of people with dementia and carers living in the community? A scoping review of the international literature

Published online by Cambridge University Press:  08 August 2017

Claire Morrisby ,
Annette Joosten  and
Marina Ciccarelli
Claire Morrisby*
Affiliation:
School of Occupational Therapy and Social Work, Curtin University, Perth, WA, Australia
Annette Joosten
Affiliation:
School of Occupational Therapy and Social Work, Curtin University, Perth, WA, Australia School of Allied Health, Australian Catholic University, Melbourne, Victoria, Australia
Marina Ciccarelli
Affiliation:
School of Occupational Therapy and Social Work, Curtin University, Perth, WA, Australia
*
Correspondence should be addressed to: Claire Morrisby, Lecturer, School of Occupational Therapy and Social Work, Curtin University, Kent St, Bentley, WA 6102, Australia. Phone: +61 892663611. Email: claire.morrisby@curtin.edu.au.
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

Providing effective support to the increasing number of people with dementia to remain at home is a challenge for families, health professionals, service providers, and governments worldwide. The aim of this paper was to summarize and disseminate the current international research evidence on the met and unmet needs of people with dementia and their carers, to inform researchers and policy-makers.

Method:

A scoping review methodology was used to guide a search of studies published between 2004 and 2015 using specified search terms; 27 studies relevant to the aim were included. A constant comparison approach was used to thematically analyze the data.

Results:

Holistic needs encompassing basic human survival, medical, financial, and social needs were experienced by people with dementia and carers, regardless of country or methodology used to collect data. A gap was identified frequently between what was needed and the supports that were received; this gap encompassed quantity, quality, and flexibility of services underpinned by service delivery models.

Conclusion:

The needs of people with dementia and their carers were diverse and not always effectively met by the services designed to support them. Recommendations are offered to service providers, policy-makers, and researchers to support more effective service provision tailored to meet the needs of people with dementia and their carers while they are living in the community.

Keywords

dementiacommunitycarersaged careservices
Type
Review Article
Information
International Psychogeriatrics , Volume 30 , Issue 1 , January 2018 , pp. 5 - 14
Copyright
Copyright © International Psychogeriatric Association 2017 

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

Alwin, J., Oberg, B. and Krevers, B. (2010). Support/services among family caregivers of persons with dementia: perceived importance and services received. International Journal of Geriatric Psychiatry, 25, 240–248. doi:10.1002/gps.2328.CrossRefGoogle ScholarPubMed
American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Arlington, VA: American Psychiatric Publishing.Google Scholar
Arksey, H. and O'Malley, L. (2005). Scoping studies: towards a methodological framework. International Journal of Social Research Methodology, 8, 19–32. doi:10.1080/1364557032000119616.Google Scholar
Australian Institute of Health and Welfare (2012). Dementia in Australia. Canberra, ACT: AIHW.Google Scholar
Bakker, C. et al. (2014). Unmet needs and health-related quality of life in young-onset dementia. American Journal of Geriatric Psychiatry, 22, 1121–1130. doi:10.1016/j.jagp.2013.02.006.CrossRefGoogle ScholarPubMed
Beeber, A. S., Thorpe, J. M. and Clipp, E. C. (2008). Community-based service use by elders with dementia and their caregivers: a latent class analysis. Nursing Research, 57, 312–321. doi:10.1097/01.NNR.0000313500.07475.eb.Google Scholar
Bradshaw, J. (1994). The conceptualization and measurement of need: a social policy perspective. In Popay, J. and Williams, G. (eds.), Researching the People's Health. Hoboken: Taylor & Francis.Google Scholar
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, 537–546. doi:10.1002/gps.1322.CrossRefGoogle ScholarPubMed
Cantegreil-Kallen, I., Turbelin, C., Angel, P., Flahault, A. and Rigaud, A. (2006). Dementia management in France: health care and support services in the community. Dementia, 5, 317–326.Google Scholar
Casado, B. L. and Lee, S. E. (2012). Access barriers to and unmet needs for home and community-based services among older Korean Americans. Home Health Care Services Quarterly, 31, 219–242. doi:10.1080/01621424.2012.703540.CrossRefGoogle ScholarPubMed
Cheston, R., Bender, M. and Byatt, S. (2000). Involving people who have dementia in the evaluation of services: a review. Journal of Mental Health, 9, 471–479.Google Scholar
Chung, J. C. C. (2006). Care needs assessment of older Chinese individuals with dementia of Hong Kong. Aging and Mental Health 10, 631–637. doi:10.1080/13607860600650532.CrossRefGoogle ScholarPubMed
Corbin, J. and Strauss, A. (2008). Strategies for qualitative data analysis. In Corbin, J. and Strauss, A. (eds.), Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 3rd edn, Thousand Oaks, CA: SAGE Publications Google Scholar
Department of Social Services (2015). Mapping of Former Services to CHSP Programme Structure. Canberra, ACT: Department of Social Services.Google Scholar
Ducharme, F., Kergoat, M. J., Coulombe, R., Lévesque, L., Antoine, P. and Pasquier, F. (2014). Unmet support needs of early-onset dementia family caregivers: a mixed-design study. BMC Nursing, 13, 49. doi:10.1186/s12912-014-0049-3.CrossRefGoogle ScholarPubMed
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 Place, 16, 101–107. doi:10.1016/j.healthplace.2009.09.002.CrossRefGoogle ScholarPubMed
Forbes, D. A. et al. (2008). Availability and acceptability of Canadian home and community-based services: perspectives of family caregivers of persons with dementia. Home Health Care Services Quarterly, 27, 75–99.Google Scholar
Freyne, A., Dolan, M. and Cooney, C. (2010). Carer-rated needs assessment of a cohort of people with dementia. Irish Journal of Psychological Medicine, 27, 72–76. doi:10.1017/S0790966700001087.Google Scholar
Gaugler, J. E., Kane, R. L., Kane, R. A. and Newcomer, R. (2005). Unmet care needs and key outcomes in dementia. Journal of the American Geriatric Society, 53, 2098–2105. doi:10.1111/j.1532-5415.2005.00495.x.Google Scholar
Gethin-Jones, S. (2014). Familial perceptions of the impact of outcome-focused homecare with older people experiencing dementia and living alone. Working with Older People: Community Care Policy & Practice, 18, 90–96. doi:10.1108/WWOP-12-2013-0031.Google Scholar
Graessel, E., Luttenberger, K., Bleich, S., Adabbo, R. and Donath, C. (2011). Home nursing and home help for dementia patients: predictors for utilization and expected quality from a family caregiver's point of view. Archives of Gerontology & Geriatrics, 52, 233–238. doi:10.1016/j.archger.2010.04.001.Google Scholar
Greenwood, N., Habibi, R., Mackenzie, A., Drennan, V. and Easton, N. (2013). Peer support for carers: a qualitative investigation of the experiences of carers and peer volunteers. American Journal of Alzheimer's Disease and Other Dementias, 28, 617–626. doi:10.1177/1533317513494449.CrossRefGoogle ScholarPubMed
Grenade, L. and Walker, M. (2005). Caring for people with dementia through community aged care packages. Geriaction, 23, 5–13.Google Scholar
Hain, D., Touhy, T. A. and Engström, G. (2010). What matters most to carers of people with mild to moderate dementia as evidence for transforming care. Alzheimer's Care Today, 11, 162–171.Google Scholar
Han, J. W. et al. (2014). Effects of social supports on burden in caregivers of people with dementia. International Psychogeriatrics, 26, 1639–1648. doi:10.1017/S1041610214001331.CrossRefGoogle ScholarPubMed
Hughes, T. B. et al. (2014). Correlates of objective and subjective measures of caregiver burden among dementia caregivers: influence of unmet patient and caregiver dementia-related care needs. International Psychogeriatrics, 26, 1875–1883. doi:10.1017/S1041610214001240.Google Scholar
Kelly, C. M. and Williams, I. C. (2007). Providing dementia-specific services to family caregivers: North Carolina's project C.A.R.E. program. Journal of Applied Gerontology, 26, 399–412.Google Scholar
Landmark, B. T., Aasgaard, H. S. and Fagerström, L. (2013). “To be stuck in it—I can't just leave”: a qualitative study of relatives’ experiences of dementia suffers living at home and need for support. Home Health Care Management & Practice, 25, 217–223. doi:10.1177/1084822313487984.Google Scholar
Levac, D., Colquhoun, H. and O'Brien, K. K. (2010). Scoping studies: advancing the methodology. Implementation Science, 5, 69. doi:10.1186/1748-5908-5-69.Google Scholar
Lim, J., Goh, J., Chionh, H. L. and Yap, P. (2012). Why do patients and their families not use services for dementia? Perspectives from a developed Asian country. International Psychogeriatrics, 24, 1571–1580. doi:10.1017/S1041610212000919.CrossRefGoogle Scholar
Low, L. F., Yap, M. and Brodaty, H. (2011). A systematic review of different models of home and community care services for older persons. BMC Health Service Research, 11, 93. doi:10.1186/1472-6963-11-93.Google Scholar
McCabe, M., You, E. and Tatangelo, G. (2016). Hearing their voice: a systematic review of dementia family caregivers’ needs. The Gerontologist, 56, e70–e88. doi:10.1093/geront/gnw078.Google Scholar
McKeown, J., Clarke, A., Ingleton, C. and Repper, J. (2010). Actively involving people with dementia in qualitative research. Journal of Clinical Nursing, 19, 1935–1943. doi:10.1111/j.1365-2702.2009.03136.x.Google Scholar
Miranda-Castillo, C., Woods, B. and Orrell, M. (2013). The needs of people with dementia living at home from user, caregiver and professional perspectives: a cross-sectional survey. BMC Health Services Research, 13. doi:10.1186/1472-6963-13-43.Google Scholar
Mountain, G. A. and Craig, C. L. (2012). What should be in a self-management programme for people with early dementia? Aging & Mental Health, 16, 576–583. doi:10.1080/13607863.2011.651430.Google Scholar
Moyle, W., Murfield, J. E., Griffiths, S. G. and Venturato, L. (2012). Assessing quality of life of older people with dementia: a comparison of quantitative self-report and proxy accounts. Journal of Advanced Nursing, 68, 2237–2246. doi:10.1111/j.1365-2648.2011.05912.x.Google Scholar
National Health Service (2015). Care Services in Your Home. Available at: http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/home-care.aspx; last accessed 18 August 2015.Google Scholar
O'Connell, B., Hawkins, M., Ostaszkiewicz, J. and Millar, L. (2012). Carers' perspectives of respite care in Australia: an evaluative study. Contemporary Nurse: A Journal for the Australian Nursing Profession, 41, 111–119.Google Scholar
Raivio, M. et al. (2007). How do officially organized services meet the needs of elderly caregivers and their spouses with Alzheimer's disease? American Journal of Alzheimer's Disease & Other Dementias, 22, 360–368.Google Scholar
Raivio, M., Laakkonen, M. L. and Pitkala, K. H. (2011). Alzheimer's patients' spouses critiques of the support services. ISRN Nursing, 2011, 943059. doi:10.5402/2011/943059.Google Scholar
Robinson, A. et al. (2012). Seeking respite: issues around the use of day respite care for the carers of people with dementia. Ageing and Society, 32, 196–218. doi:10.1017/s0144686x11000195.CrossRefGoogle Scholar
Roelands, M., Van Oost, P. and Depoorter, A. (2008). Service use in family caregivers of persons with dementia in Belgium: psychological and social factors. Health & Social Care in the Community, 16, 42–53. doi:10.1111/j.1365-2524.2007.00730.x.Google Scholar
Rothera, I. et al. (2008). An evaluation of a specialist multiagency home support service for older people with dementia using qualitative methods. International Journal of Geriatric Psychiatry, 23, 65–72. doi:10.1002/gps.1841.Google Scholar
Seeher, K., Withall, A. and Brodaty, H. (2011). The Dementia Research Mapping Project, the 2010 Update: Final Report. Sydney: Dementia Collaborative Research Centre, University of New South Wales.Google Scholar
Steiner, V., Pierce, L. L. and Salvador, D. (2016). Information needs of family caregivers of people with dementia. Rehabilitation Nursing, 41, 162–169. doi:10.1002/rnj.214.Google Scholar
Stirling, C., Andrews, S., Croft, T., Vickers, J., Turner, P. and Robinson, A. (2010). Measuring dementia carers' unmet need for services - an exploratory mixed method study. BMC Health Services Research, 10. doi:10.1186/1472-6963-10-122.CrossRefGoogle ScholarPubMed
van Der Roest, H. G. et al. (2009). What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. International Psychogeriatrics, 21, 949–965. doi:10.1017/S1041610209990147.Google Scholar
van der Roest, H. G., Meiland, F. J., Maroccini, R., Comijs, H. C., Jonker, C. and Dröes, R. M. (2007). Subjective needs of people with dementia: a review of the literature. International Psychogeriatrics, 19, 559–592. doi:10.1017/S1041610206004716.Google Scholar
van Exel, J., de Graaf, G. and Brouwer, W. (2007). Care for a break? An investigation of informal caregivers' attitudes toward respite care using Q-methodology. Health Policy, 83, 332–342. doi:10.1016/j.healthpol.2007.02.002.Google Scholar
Ward-Griffin, C. et al. (2012). Dementia home care resources: how are we managing? Journal of Aging Research, 11p. doi:10.1155/2012/590724.Google Scholar
Wolfs, C. A. G., De Vugt, M. E., Verkaaik, M., Verkade, P. J. and Verhey, F. R. J. (2010). Empowered or overpowered? Service use, needs, wants and demands in elderly patients with cognitive impairments. International Journal of Geriatric Psychiatry, 25, 1006–1012. doi:10.1002/gps.2451.CrossRefGoogle ScholarPubMed