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

Article type: Research Article

Authors: Handels, Ron L.H.^{a; b; *} | Sköldunger, Anders^b | Bieber, Anja^e | Edwards, Rhiannon Tudor^k | Gonçalves-Pereira, Manuel^c | Hopper, Louise^d | Irving, Kate^d | Jelley, Hannahⁱ | Kerpershoek, Liselot^a | Marques, Maria J.^c | Meyer, Gabriele^e | Michelet, Mona^{f; h; m} | Portolani, Elisa^j | Røsvik, Janne^{f; m} | Selbaek, Geir^{f; g; h} | Stephan, Astrid^e | de Vugt, Marjolein^a | Wolfs, Claire^a | Woods, Bobⁱ | Zanetti, Orazio^j | Verhey, Frans^a | Wimo, Anders^{b; l} | and Actifcare consortium

Affiliations: [a] Department of Psychiatry and Neuropsychology, Alzheimer Centre Limburg, School for Mental Health and Neurosciences, Maastricht University, Maastricht, The Netherlands | [b] Department of Neurobiology, Care Science and Society, Division of Neurogeriatrics, Karolinska Institute, Stockholm, Sweden | [c] CEDOC, Chronic Diseases Research Centre, NOVA Medical School/Faculdade de Ci—-ncias Médicas, Universidade Nova de Lisboa, Portugal | [d] School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland | [e] Martin Luther University Halle-Wittenberg, Medical Faculty, Institute for Health and Nursing Science, Halle (Saale), Germany | [f] Norwegian National Advisory Unit on Ageing and Health, Vestfold Health Trust, T—–nsberg, Norway | [g] Centre for Old Age Psychiatric Research, Innlandet Hospital Trust, Ottestad, Norway | [h] Faculty of Medicine, Institute of Health and Society, University of Oslo, Oslo, Norway | [i] Dementia Services Development Centre Wales (DSDC), Bangor University, Bangor, United Kingdom | [j] Alzheimer’s Unit - Memory Clinic, IRCCS Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy | [k] Centre for Health Economics and Medicines Evaluation, Bangor University, Bangor, United Kingdom | [l] Centre for Research & Development, Uppsala University/County Council of Gävleborg, Gävle, Sweden | [m] Department of Geriatric Medicine, Oslo University Hospital, Norway

Correspondence: [*] Correspondence to: Ron Handels, Alzheimer Centre Limburg, Maastricht University, P.O. Box 616, 6200 MD Maastricht, The Netherlands. E-mail: [email protected].

Abstract: 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.

Keywords: Access to care, costs, dementia, health-economics, quality of life, unmet needs

DOI: 10.3233/JAD-180275

Journal: Journal of Alzheimer's Disease, vol. 66, no. 3, pp. 1027-1040, 2018