Impact of Untimely Access to Formal Care on Costs and Quality of Life in Community Dwelling People with Dementia

Niels Janssen*, Ron L. Handels, Anders Skoldunger, Bob Woods, Hannah Jelley, Rhiannon Tudor Edwards, Martin Orrell, Geir Selbaek, Janne Rosvik, Manuel Goncalves-Pereira, Maria J. Marques, Orazio Zanetti, Elisa Portolani, Kate Irving, Louise Hopper, Gabriele Meyer, Anja Bieber, Astrid Stephan, Liselot Kerpershoek, Claire A. G. WolfsMarjolein E. de Vugt, Frans R. J. Verhey, Anders Wimo, ActifCare Consortium

*Corresponding author for this work

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Background: Access to formal care is not always timely and a better understanding on the impact of untimely access is needed. Objective: To examine, from a societal perspective, the impact of untimely access to formal care in terms of total costs and quality of life over one year in community dwelling people with dementia. Methods: Within the Actifcare study, needs, resource use, and quality of life were observed for one year in a cohort of 451 community dwelling people with dementia in 8 European countries. Untimely access to care was operationalized as having at least one unmet need for care identified by the Camberwell Assessment of Need for the Elderly (CANE) instrument. Two regression models were built for both total costs and quality of life measured by the EQ-5D-5L, one using sum of unmet needs and one using a predefined selection of need items. Results: Unmet needs were not associated with higher total costs but they were associated with a lower quality of life of people with dementia. Of all CANE items, only an unmet need for "company" was significantly related to lower total costs. Conclusion: Total costs did not seem to differ between participants with unmet and met needs. Only few associations between specific unmet needs and costs and quality of life were found. Furthermore, quality of life of people with dementia decreases when multiple unmet needs are experienced, indicating that assessing and meeting needs is important to improve quality of life.
Original languageEnglish
Pages (from-to)1165-1174
Number of pages10
JournalJournal of Alzheimer's Disease
Issue number3
Publication statusPublished - 1 Jan 2018


  • Access to care
  • costs
  • dementia
  • quality of life
  • unmet needs
  • untimely

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