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  • Liselot Kerpershoek
    Maastricht University
  • Marjolein de Vugt
    Maastricht University
  • Claire Wolfs
    Maastricht University
  • Robert Woods
  • Hannah Jelley
  • Martin Orrell
    Bangor University
  • Anja Bieber
    Martin-Luther University, Halle-Wittenberg
  • Gabriele Meyer
    Martin-Luther University, Halle-Wittenberg
  • Geir Selbaek
    Oslo University Hospital
  • Ron Handels
    Maastricht University
  • Anders Wimo
    Karolinska Institute, Stockholm
  • Louise Hopper
    Dublin City University
  • Kate Irving
    Dublin City University
  • Maria J. Marques
    Universidade Nova de Lisboa
  • Manuel Gonçalves-Pereira
    Universidade Nova de Lisboa
  • Elisa Portolani
    IRCCS S. Giovanni di Dio “Fatebenefratelli”
  • Orazio Zanetti
    IRCCS S. Giovanni di Dio “Fatebenefratelli”
  • Frans Verhey
    Maastricht University
Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL).
Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses.
Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both.
Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL. The perspectives of people with dementia are informative when identifying needs.


  • Dementia, (un)met needs, Informal carer, Quality of Life
Original languageEnglish
Pages (from-to)897-902
Number of pages6
JournalAging and Mental Health
Issue number7
Early online date25 Oct 2017
Publication statusPublished - Jul 2018

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