The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: a systematic review

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

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

82 Citations (Web of Science)


ObjectiveIn this review, the care needs and experiences with the use of available services of individuals with young-onset dementia (YOD) and their caregivers were investigated. This knowledge is an important prerequisite for the development of appropriate interventions and personalized care to address their specific needs and problems. DesignA systematic literature search was performed in PubMed, Psycinfo and Cinahl. A quality checklist for observational and qualitative studies was used to appraise the methodological quality of the studies. ResultsTwenty-seven studies were included, and a synthesis of the literature revealed six themes. The first theme concerned problems in the diagnostic period. Early recognition and referral was reported as an essential area that required improvement in order to obtain appropriate help in time. The second theme discussed the need for information about YOD and the availability of care throughout the caregiving trajectory. The third theme described barriers in access to care that hindered caregivers in finding the right services. The fourth theme showed the availability of appropriate services and specific unmet needs. The fifth theme illustrated that behavioural and personality changes pose a significant challenge for caregivers and other family members. The last theme showed the profound impact of YOD on caregivers. ConclusionsThe literature indicates that people with YOD and their caregivers face a wide range of difficulties during the disease process. The reviewed studies provide an important foundation for knowledge and awareness about the specific care needs and experiences of people with YOD and their caregivers.
Original languageEnglish
Pages (from-to)1261-1276
JournalInternational Journal of Geriatric Psychiatry
Issue number12
Publication statusPublished - Dec 2016


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

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