International Psychogeriatrics

Research Article

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

Henriëtte G. van der Roesta1 c1, Franka J. M. Meilanda1, Hannie C. Comijsa1, Els Derksena2, Aaltje P. D. Jansena3, Hein P. J. van Houta3, Cees Jonkera1 and Rose-Marie Dröesa1

a1 Department of Psychiatry/Alzheimer Center, EMGO Institute for Health and Care Research, VU University Medical Center/GGZ inGeest, Amsterdam, The Netherlands

a2 Alzheimer Center Nijmegen, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands

a3 Department of General Practice, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands

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.

(Received November 19 2008)

(Revised December 23 2008)

(Revised April 21 2009)

(Accepted April 23 2009)

(Online publication July 15 2009)

Correspondence:

c1 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: hg.vanderroest@vumc.nl.