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J Alzheimers Dis. 2018 Oct 25. doi: 10.3233/JAD-180275. [Epub ahead of print]

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

Author information

1
Department of Psychiatry and Neuropsychology and Alzheimer Centre Limburg, School for Mental Health and Neurosciences, Maastricht University, Maastricht, The Netherlands.
2
Department of Neurobiology, Care Science and Society, Division of Neurogeriatrics, Karolinska Institute, Stockholm, Sweden.
3
Martin Luther University Halle-Wittenberg, Medical Faculty, Institute for Health and Nursing Science, Halle (Saale), Germany.
4
Centre for Health Economics and Medicines Evaluation, Bangor University, Bangor, United Kingdom.
5
CEDOC, Chronic Diseases Research Centre, NOVA Medical School/Faculdade de Ci--ncias Médicas, Universidade Nova de Lisboa, Portugal.
6
School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland.
7
Dementia Services Development Centre Wales (DSDC), Bangor University, Bangor, United Kingdom.
8
Norwegian National Advisory Unit on Ageing and Health, Vestfold Health Trust, T--nsberg, Norway.
9
Faculty of Medicine, Institute of Health and Society, University of Oslo, Oslo, Norway.
10
Department of Geriatric Medicine, Oslo University Hospital, Norway.
11
Alzheimer's Unit - Memory Clinic, IRCCS Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy.
12
Centre for Old Age Psychiatric Research, Innlandet Hospital Trust, Ottestad, Norway.
13
Centre for Research & Development, Uppsala University/County Council of Gävleborg, Gävle, Sweden.

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

PMID:
30372674
DOI:
10.3233/JAD-180275

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