TY - JOUR

T1 - Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study

AU - Handels, Ron

AU - Skoldunger, Anders

AU - Bieber, Anja

AU - Edwards, Rhiannon

AU - Gonçalves-Pereira, Manuel

AU - Hopper, Louise

AU - Irving, Kate

AU - Jelley, Hannah

AU - Kerpershoek, Liselot

AU - Marques, Maria J.

AU - Meyer, Gabriele

AU - Michelet, Mona

AU - Portolani, Elisa

AU - Røsvik, Janne

AU - Selbaek, Geir

AU - Stephan, Astrid

AU - de Vught, Marjolein

AU - Wolfs, Claire

AU - Woods, Robert

AU - Zanetti, Orazio

AU - Verhey, Frans

AU - Wimo, Anders

PY - 2018/11/23

Y1 - 2018/11/23

N2 - 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.

AB - 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.

U2 - 10.3233/JAD-180275

DO - 10.3233/JAD-180275

M3 - Article

VL - 66

SP - 1027

EP - 1040

JO - Journal of Alzheimer's Disease

JF - Journal of Alzheimer's Disease

SN - 1387-2877

IS - 3

ER -