Hostname: page-component-586b7cd67f-dlnhk Total loading time: 0 Render date: 2024-11-23T22:09:41.263Z Has data issue: false hasContentIssue false

What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services

Published online by Cambridge University Press:  15 July 2009

Henriëtte G. van der Roest*
Affiliation:
Department of Psychiatry/Alzheimer Center, EMGO Institute for Health and Care Research, VU University Medical Center/GGZ inGeest, Amsterdam, The Netherlands
Franka J. M. Meiland
Affiliation:
Department of Psychiatry/Alzheimer Center, EMGO Institute for Health and Care Research, VU University Medical Center/GGZ inGeest, Amsterdam, The Netherlands
Hannie C. Comijs
Affiliation:
Department of Psychiatry/Alzheimer Center, EMGO Institute for Health and Care Research, VU University Medical Center/GGZ inGeest, Amsterdam, The Netherlands
Els Derksen
Affiliation:
Alzheimer Center Nijmegen, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands
Aaltje P. D. Jansen
Affiliation:
Department of General Practice, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands
Hein P. J. van Hout
Affiliation:
Department of General Practice, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands
Cees Jonker
Affiliation:
Department of Psychiatry/Alzheimer Center, EMGO Institute for Health and Care Research, VU University Medical Center/GGZ inGeest, Amsterdam, The Netherlands
Rose-Marie Dröes
Affiliation:
Department of Psychiatry/Alzheimer Center, EMGO Institute for Health and Care Research, VU University Medical Center/GGZ inGeest, Amsterdam, The Netherlands
*
Correspondence should be addressed to: Ms. Henriëtte van der Roest, MSc, VU University Medical Center/GGZ inGeest, Academic Department of Psychiatry, Valeriuskliniek, Valeriusplein 9, 1075 BG Amsterdam, The Netherlands. Phone: +31 (0)20 7885 454; Fax: +31 (0)20 7885 549. Email: [email protected].

Abstract

Background: The aging society will bring an increase in the number of people with dementia living in the community. This will mean a greater demand on care and welfare services to deliver efficient and customized care, which requires a thorough understanding of subjective and objective care needs. This study aims to assess the needs of community-dwelling people with dementia as reported by themselves and by their informal carers. The study also aims to give insight into the service use and gaps between needs and the availability of services.

Methods: 236 community-dwelling people with dementia and 322 informal carers were interviewed separately. (Un)met needs were assessed using the Camberwell Assessment of Needs for the Elderly (CANE).

Results: Most unmet needs were experienced in the domains of memory, information, company, psychological distress and daytime activities. People with dementia reported fewer (unmet) needs than their carers. Type and severity of dementia, living situation and informal carer characteristics were related to the number of reported needs.

Conclusions: This study showed a large number of unmet needs in dementia. Reasons for unmet needs are lack of knowledge about the existing service offer, a threshold to using services and insufficient services offer. These results provide a good starting point for improving community care for people with dementia.

Type
Research Article
Copyright
Copyright © International Psychogeriatric Association 2009

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

Aggarwal, N., Vass, A. A., Minardi, H. A., Ward, R., Garfield, C. and Cybyk, B. (2003). People with dementia and their relatives: personal experiences of Alzheimer's and of the provision of care. Journal of Psychiatric and Mental Health Nursing, 10, 187197.CrossRefGoogle ScholarPubMed
Altman, D. G. (1991). Practical Statistics for Medical Research. London: Chapman & Hall/CRC.Google Scholar
Andersen, R. M. (1995). Revisiting the behavioral model and access to medical care: does it matter? Journal of Health and Social Behavior, 36, 110.CrossRefGoogle ScholarPubMed
Andersen, R. M. and Davidson, P. (1996). Measuring access and trends. In Andersen, R. M. and Davidson, P. (eds.), Changing the US Healthcare System (pp. 1340). San Francisco, CA: Jossey Bass.Google Scholar
Bjorkhem, K., Olsson, A., Hallberg, I. R. and Norberg, A. (1992). Caregivers’ experience of providing care for demented persons living at home. Scandinavian Journal of Primary Health Care, 10, 5359.CrossRefGoogle ScholarPubMed
Bowes, A. and 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.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, 537546.CrossRefGoogle ScholarPubMed
Buntinx, F., De Lepeleire, J. and Ylieff, M. (2006). Zorg voor dementerenden in België. Honderd vragen en antwoorden op basis van het Qualidem-onderzoek. Antwerpen–Apeldoorn: Garant.Google Scholar
Daker-White, G., Beattie, A. M., Gilliard, J. and Means, R. (2002). Minority ethnic groups in dementia care: a review of service needs, service provision and models of good practice. Aging and Mental Health, 6, 101108.CrossRefGoogle Scholar
de Boer, M. E., Hertogh, C. M., Dröes, R. M., Riphagen, I. I., Jonker, C. and Eefsting, J. A. (2007). Suffering from dementia – the patient's perspective: a review of the literature. International Psychogeriatrics, 19, 10211039.CrossRefGoogle ScholarPubMed
de Klaver, P. M. and Scholten, C. (2002). De vraag naar thuiszorg: literatuurstudie naar voorbeelden van (meer) vraaggestuurde thuiszorg. Leiden: SWOKA/Research voor Beleid.Google Scholar
Dello Buono, M. et al. (1999). Community care for patients with Alzheimer's disease and non-demented elderly people: use and satisfaction with services and unmet needs in family caregivers. International Journal of Geriatric Psychiatry, 14, 915924.3.0.CO;2-H>CrossRefGoogle ScholarPubMed
Dröes, R. M., Meiland, F., Schmitz, M. and Van Tilburg, W. (2004a). Effect of combined support for people with dementia and carers versus regular day care on behaviour and mood of persons with dementia: results from a multi-centre implementation study. International Journal of Geriatric Psychiatry, 19, 673684.CrossRefGoogle ScholarPubMed
Dröes, R. M., Van Hout, H. P. J. and Van Der Ploeg, E. S. (2004b). The Dutch version of the Camberwell Assessment of Need for the Elderly (CANE). Revised Version (IV). Available at: http://www.ouderenpsychiatrie.nl/sjablonen/1/infotype/news/newsitem/view.asp?objectID=1190.Google Scholar
Dröes, R. M. et al. (2006). Quality of life in dementia in perspective: An explorative study of variations in opinions among people with dementia and their professional caregivers, and in literature. Dementia, 5, 533558.CrossRefGoogle Scholar
Edelman, P., Kuhn, D., Fulton, B. R. and Kyrouac, G. A. (2006). Information and Service Needs of Persons With Alzheimer's Disease and Their Family Caregivers Living in Rural Communities. American Journal of Alzheimer's Disease and Other Dementias, 21, 226233.CrossRefGoogle ScholarPubMed
Folstein, M. F., Folstein, S. E. and McHugh, P. R. (1975). “Mini-mental state”: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189198.CrossRefGoogle ScholarPubMed
Forbes, D. A., Debra, D. and Janzen, B. L. (2006). Rural and urban Canadians with dementia: use of health care services. Canadian Journal of Aging, 25, 321330.CrossRefGoogle 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 Geriatrics Society, 53, 20982105.CrossRefGoogle ScholarPubMed
Gilliard, J. and Hagen, I. (2004). Enabling Technologies for People with Dementia. Cross-National Analysis Report. Report no. D4.4.1 QLK6-CT-2000–00653. Sem, Norway: Norwegian Centre for Dementia Research and European Commission.Google Scholar
Gordon, D. S. et al. (1997). A population needs assessment profile for dementia. International Journal of Geriatric Psychiatry, 12, 642647.3.0.CO;2-P>CrossRefGoogle ScholarPubMed
Hancock, G. A., Woods, B., Challis, D. and Orrell, M. (2006). The needs of older people with dementia in residential care. International Journal of Geriatric Psychiatry, 21, 4349.CrossRefGoogle ScholarPubMed
Huijsman, R. (1990). Model van voorzieningen voor ouderen. Zeist: R.U. Maastricht.CrossRefGoogle Scholar
Janevic, M. R. and Connell, M. (2001). Racial, ethnic, and cultural differences in the dementia caregiving experience: recent findings. Gerontologist, 41, 334347.CrossRefGoogle ScholarPubMed
Jansen, A. P. et al. (2005). (Cost)-effectiveness of case-management by district nurses among primary informal caregivers of older adults with dementia symptoms and the older adults who receive informal care: design of a randomized controlled trial [ISCRTN83135728]. BMC Public Health, 5, 133.CrossRefGoogle ScholarPubMed
Karel, M. J., Moye, J., Bank, A. and Azar, A. R. (2007). Three methods of assessing values for advance care planning: comparing persons with and without dementia. Journal of Aging and Health, 19, 123151.CrossRefGoogle ScholarPubMed
Koffman, J. and Taylor, S. (1997). The needs of caregivers. Elderly Care, 9, 1619.CrossRefGoogle ScholarPubMed
Lauriks, S. et al. (2007). Review of ICT-based services for identified unmet needs in people with dementia. Ageing Research Reviews, 6, 223246.CrossRefGoogle ScholarPubMed
Lyons, K. S., Zarit, S. H., Sayer, A. G. and Whitlatch, C. J. (2002). Caregiving as a dyadic process: perspectives from caregiver and receiver. Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 57, 195204.CrossRefGoogle ScholarPubMed
Meaney, A. M., Croke, M. and Kirby, M. (2005). Needs assessment in dementia. International Journal of Geriatric Psychiatry, 20, 322329.CrossRefGoogle ScholarPubMed
Meerveld, J., Schumacher, J., Krijger, E., Bal, R. and Nies, H. (2004). Landelijk Dementieprogramma. Nederlands Instituut voor Zorg en Welzijn / NIZW.Google Scholar
Meiland, F. J., Kat, M. G., Van Tilburg, W., Jonker, C. and Dröes, R. M. (2005). The emotional impact of psychiatric symptoms in dementia on partner caregivers: do caregiver, patient, and situation characteristics make a difference? Alzheimer Disease and Associated Disorders, 19, 195201.CrossRefGoogle Scholar
Meiland, F.J. et al. (2007). COGKNOW: Development and evaluation of an ICT-device for people with dementia. Studies in Health Technology and Informatics, 127, 166177.Google Scholar
Muskens, J. B. (1993). Het beloop van dementie. Een exploratief longitudinaal onderzoek in de huisartspraktijk. Nijmegen: Katholieke Universiteit Nijmegen.Google Scholar
Nankervis, J., Schofield, H., Herrman, H. and Bloch, S. (1997). Home-based assessment for family carers: a preventative strategy to identify and meet service needs. International Journal of Geriatric Psychiatry, 12, 193201.3.0.CO;2-U>CrossRefGoogle ScholarPubMed
Oriani, M. et al. (2003). An electronic memory aid to support prospective memory in patients in the early stages of Alzheimer's disease: a pilot study. Aging and Mental Health, 7, 2227.CrossRefGoogle ScholarPubMed
Orrell, M. and Hancock, G. (2004). CANE: Camberwell Assessment of Need for the Elderly. London: Gaskell.Google Scholar
Philp, I. et al. (1995). Community care for demented and non-demented elderly people: a comparison study of financial burden, service use, and unmet needs in family supporters. BMJ, 310, 15031506.CrossRefGoogle ScholarPubMed
Pot, A. M., van Dyck, R. and Deeg, D. J. (1995). [Perceived stress caused by informal caregiving. Construction of a scale]. Tijdschrift voor Gerontologie en Geriatrie, 26, 214219.Google ScholarPubMed
Reisberg, B. and Lauter, H. (1993). Plenary Session: Clinical dementias staging methodologies. International Psychogeriatric Association Newsletter, 10, 1617.Google Scholar
Reisberg, B., Ferris, S., De Leon, M. J. and Crook, T. (1982). The Global Deterioration Scale for assessment of primary degenerative dementia. American Journal of Psychiatry, 139, 11361139.Google ScholarPubMed
Reynolds, T. et al. (2000). Camberwell Assessment of Need for the Elderly (CANE): development, validity and reliability. British Journal of Psychiatry, 176, 444452.CrossRefGoogle ScholarPubMed
Rodriguez, G., De Leo, C., Girtler, N., Vitali, P., Grossi, E. and Nobili, F. (2003). Psychological and social aspects in management of Alzheimer's patients: an inquiry among caregivers. Neurological Sciences, 24, 329335.CrossRefGoogle ScholarPubMed
Roth, M. et al. (1986). CAMDEX: a standardised instrument for the diagnosis of mental disorder in the elderly with special reference to the early detection of dementia. British Journal of Psychiatry, 149, 698709.CrossRefGoogle Scholar
Steeman, E., Godderis, J., Grypdonck, M., De Bal, N. and Dierckx de Casterlé, B. (2007). Living with dementia from the perspective of older people: is it a positive story? Aging and Mental Health, 11, 119130.CrossRefGoogle ScholarPubMed
Thorgrimsen, L. et al. (2003). Whose quality of life is it anyway? The validity and reliability of the Quality of Life-Alzheimer's Disease (QoL-AD) scale. Alzheimer Disease and Associated Disorders, 17, 201208.CrossRefGoogle ScholarPubMed
Toseland, R. W., McCallion, P., Gerber, T., Dawson, C., Gieryic, S. and Guilamo-Ramos, V. (1999). Use of health and human services by community-residing people with dementia. Social Work, 44, 535548.CrossRefGoogle ScholarPubMed
Toseland, R. W., McCallion, P., Gerber, T. and Banks, S. (2002). Predictors of health and human services use by persons with dementia and their family caregivers. Social Science and Medicine, 55, 12551266.CrossRefGoogle ScholarPubMed
van der Roest, H. G., Meiland, F. J. M., 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, 559592.CrossRefGoogle ScholarPubMed
van der Roest, H. G., Meiland, F. J. M., Van Hout, H. P. J., Jonker, C. and Dröes, R. M. (2008a). Validity and reliability of the Dutch version of the Camberwell Assessment of Need for the Elderly in community-dwelling people with dementia. International Psychogeriatrics, 20, 12731290.CrossRefGoogle ScholarPubMed
van der Roest, H. G. et al. (2008b). Finding the service you need: human centered design of a Digital Interactive Social Chart in DEMentia care (DEM-DISC). Studies in Health Technology and Informatics, 137, 210224.Google ScholarPubMed
van der Roest, H. G., Meiland, F. J. M., Jonker, C. and Dröes, R. M. (2009). User evaluation of the DEM-DISC. Unpublished manuscript available from the author.Google Scholar
Vernooij-Dassen, M. J. F. J. (1993). Dementie en thuiszorg: een onderzoek naar determinanten van het competentiegevoel van centrale mantelzorgers en het effect van professionele interventie. Amsterdam/Lisse: Swets & Zeitlinger B. V.Google Scholar