Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study

Ron L. H. Handels*, Anders Skoldunger, Anja Bieber, Rhiannon Tudor Edwards, Manuel Goncalves-Pereire, Louise Hopper, Kate Irving, Hannah Jelley, Liselot Kerpershoek, Maria J. Marques, Gabriele Meyer, Mona Michelet, Elisa Portolani, Janne Rosvik, Geis Selbaek, Astrid Stephan, Marjolein de Vugt, Claire Wolfs, Bob Woods, Orazio ZanettiFrans Verhey, Anders Wimo, ActifCare Consortium

*Corresponding author for this work

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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 (sic)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
Number of pages14
JournalJournal of Alzheimer's Disease
Issue number3
Publication statusPublished - 1 Jan 2018


  • Access to care
  • costs
  • dementia
  • health-economics
  • quality of life
  • unmet needs
  • TIME


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