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  • Ron Handels
  • Anders Skoldunger
  • Anja Bieber
    Martin-Luther University, Halle-Wittenberg
  • Rhiannon Edwards
  • Manuel Gonçalves-Pereira
    Universidade Nova de Lisboa, Lisbon
  • Louise Hopper
  • Kate Irving
    Dublin City University
  • Hannah Jelley
  • Liselot Kerpershoek
    Maastricht University, Netherlands
  • Maria J. Marques
    Universidade Nova de Lisboa, Lisbon
  • Gabriele Meyer
    Martin-Luther University, Halle-Wittenberg
  • Mona Michelet
  • Elisa Portolani
  • Janne Røsvik
    Vestfold Hospital Trust, Tønsberg
  • Geir Selbaek
  • Astrid Stephan
    Martin-Luther University, Halle-Wittenberg
  • Marjolein de Vught
  • Claire Wolfs
    Maastricht University, Netherlands
  • Robert Woods
  • Orazio Zanetti
    IRCCS S. Giovanni di Dio “Fatebenefratelli”
  • Frans Verhey
    Maastricht University, Netherlands
  • Anders Wimo
Background:With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care. Objective:To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs. Methods:Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self- and proxy-rated) and informal caregiver’s quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression. Results:Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers’ utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately € 17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL. Conclusion:We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care.
Original languageEnglish
Pages (from-to)1027-1040
JournalJournal of Alzheimer's Disease
Volume66
Issue number3
DOIs
Publication statusPublished - 23 Nov 2018

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