Informal Caregivers of People with Dementia: Problems, Needs and Support in the Initial Stage and in Subsequent Stages of Dementia: A Questionnaire Survey

Marieke Zwaanswijk1, José M. Peeters*, 1, Adriana P.A van Beek1, Julie H.C.M Meerveld2, Anneke L Francke1, 3
1 NIVEL, Netherlands Institute for Health Services Research, P.O. Box 1568, 3500 BN Utrecht, The Netherlands
2 Dutch Alzheimer’s Association, P.O. Box 183, 3980 CD Bunnik, The Netherlands
3 Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Van der Boechorststraat 7, 1081 BT Amsterdam, The Netherlands

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© Zwaanswijk et al.; Licensee Bentham Open.

open-access license: This is an open access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestrictive use, distribution, and reproduction in any medium, provided the original work is properly cited.

* Address correspondence to this author at the NIVEL, Netherlands Institute for Health Services Research, P.O. Box 1568, 3500 BN Utrecht, the Netherlands; Tel: +31 30 2729628; Fax: +31 30 2729700; E-mail


Objective: The ageing of the population is expected to lead to an increase in the prevalence of dementia. Providing support to informal caregivers is essential to promote their wellbeing and prevent serious caregiver burden. The aim of the study is to investigate whether differences occur between the initial and later stages of dementia in terms of (1) problems experienced by informal caregivers in the provision of care, (2) use of professional support by persons with dementia, (3) informal caregivers’ needs for additional professional support.

Methods: The data were collected within the framework of the Dutch National Dementia Program, which was instigated in 2005 by the Dutch Ministry of Health, Welfare and Sport to improve integrated care for people with dementia and their informal caregivers. This paper is based on data of a questionnaire survey among 1494 informal caregivers, collected between September 2007 and December 2008.

Results: Most informal caregivers (98-99%) experienced problems in caring for a person with dementia, irrespective of the stage of the illness process. In later stages, informal caregivers more often experienced problems in their social networks. Most dementia patients (87-94%) received ambulatory professional support.

Conclusions: Since informal caregivers indicate a need for additional professional support in all stages of dementia, professional support should be provided during the entire illness process. Informal caregivers need advice on how to cope with symptoms of dementia, how to deal with behavior problems and receive more information about (early and advanced stages of) dementia and the supply of support.

Keywords: Dementia, informal caregivers, illness stages, professional support, transition, survey.