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

Article type: Research Article

Authors: Janssen, Niels^{a; *} | Handels, Ron L.^{a; b} | Sköldunger, Anders^b | Woods, Bob^c | Jelley, Hannah^c | Edwards, Rhiannon Tudor^d | Orrell, Martin^e | Selbæk, Geir^f | Røsvik, Janne^f | Gonçalves-Pereira, Manuel^g | Marques, Maria J.^g | Zanetti, Orazio^h | Portolani, Elisa^h | Irving, Kateⁱ | Hopper, Louiseⁱ | Meyer, Gabriele^j | Bieber, Anja^j | Stephan, Astrid^j | Kerpershoek, Liselot^a | Wolfs, Claire A.G.^a | de Vugt, Marjolein E.^a | Verhey, Frans R.J.^a | Wimo, Anders^b | Consortium Actifcare

Affiliations: [a] Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, The Netherlands | [b] Department of Neurobiology, Care sciences and Society, Karolinska Institutet, Stockholm, Sweden | [c] Dementia Services Development Centre, Bangor University, Bangor, UK | [d] Centre for Health Economics and Medicines Evaluation (CHEME), Bangor University, Bangor, UK | [e] Nottingham University, Institute of Mental Health, Nottingham, UK | [f] Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, T—nsberg, Norway | [g] CEDOC, Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal | [h] Alzheimer’s Research Unit – Memory Clinic – IRCCS Centro S.Giovanni di Dio Fatebenefratelli, Brescia, Italy | [i] School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland | [j] Martin Luther University Halle-Wittenberg, Medical Faculty, Institute of Health and Nursing Sciences, Halle, Germany

Correspondence: [*] Correspondence to: Niels Janssen, MSc, Alzheimer Centre Limburg, Maastricht University, P.O. Box 616, 6200 MD Maastricht, The Netherlands. E-mail: niels.janssen@maastrichtuniversity.nl.

Abstract: 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.

Keywords: Access to care, costs, dementia, quality of life, unmet needs, untimely

DOI: 10.3233/JAD-180531

Journal: Journal of Alzheimer's Disease, vol. 66, no. 3, pp. 1165-1174, 2018