Exploring perspectives of young onset dementia caregivers with high versus low unmet needs

Joany K. Millenaar, Christian Bakker, Deliane van Vliet, Raymond T. C. M. Koopmans, Alexander Kurz, Frans R. J. Verhey, Marjolein E. de Vugt*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

126 Downloads (Pure)


BackgroundThis study is part of the Research to Assess Policies and Strategies for Dementia in the Young project. Information about specific needs in young onset dementia (YOD) will provide the basis for the development of an e-health intervention to assist caregivers in coping with YOD in several European countries. ObjectiveThe aim was to investigate the issues caregivers of people with YOD face. MethodsA qualitative content analysis method was used to analyse interviews with YOD caregivers. Quantitative data of the Needs in Young Onset Dementia study were used to select caregivers based on a ranking of unmet needs, to capture differences and similarities between caregivers that experienced high levels of unmet needs versus those with low levels of unmet needs. Needs were assessed with the Camberwell Assessment of Needs in the Elderly. ResultsFindings revealed the following themes: (i) acceptance; (ii) perception of the relationship; (iii) role adaptation; (iv) Availability of appropriate services; (v) social support; and (vi) awareness in the person with dementia and acceptance of help. Several factors seemed more apparent in the caregivers who experienced few unmet needs opposed to the caregivers who experienced more unmet needs. ConclusionThe current study provides an in-depth perspective on the caregiver's experiences and emphasizes specific themes that could be addressed in future interventions. This might contribute to a caring situation in which the caregiver experiences less unmet needs. Copyright (c) 2017 John Wiley & Sons, Ltd.
Original languageEnglish
Pages (from-to)340-347
Number of pages8
JournalInternational Journal of Geriatric Psychiatry
Issue number2
Publication statusPublished - 1 Feb 2018


  • young onset dementia
  • caregivers
  • service use
  • care needs

Cite this