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

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.

A validation study of the ICECAP-O in informal carers of people with dementia from eight European Countries

“…Care receivers adhering to the specified criteria ("Appendix 1") and their informal carers were invited to complete the questionnaires, available in seven different languages. For all measures, including the ICECAP-O, nationally validated versions were used, or, if not available, the measure was translated, back translated and pilot tested following a translation protocol [21][22][23]. The data collection consisted of different parts.…”

The burden of informal caregiving in Hungary, Poland and Slovenia: results from national representative surveys

“…Happiness scores are similar to the average happiness scores of the total population measured by the EQLS 2016 in Hungary and Slovenia (7 and 7) but slightly lower in Poland (8) (considering methodological differences, as happiness was measured on a 1-10 scale in the EQLS survey, while on a 0-10 scale in our study by the CarerQol-VAS instrument) [24]. For further comparison, the CarerQol-7D scores and CarerQol-VAS happiness scores of caregivers of Alzheimer patients from eight European countries were reported in the same range (between 72-80; and 5.6-7.0 across countries) [25]. Higher scores were reported in a multi-centre study with caregivers of children with drug-resistant epilepsy (81.4/6.9; N = 181) [26] and among caregivers of Dutch elderly after a hip fracture (83.7/7.6, N = 123) [27].…”

Ökonomische und gesellschaftliche Herausforderungen der Demenz in Deutschland – Eine Metaanalyse

“…Verschiedene Studien haben unter der Nutzung von Primärdaten versucht, diesen Herausforderungen gerecht zu werden [5,[9][10][11][12][13][14][15][16][17]. Während sich diese Studien meist auf kognitiv eingeschränkte Menschen und damit nicht ausschließlich auf Menschen mit einer Demenzdiagnose beziehen und auch den informellen Pflegeaufwand der Angehörigen und deren Verdienstausfälle aufgrund der Pflege monetär bewerten, zeigten sich vielfach Unsicherheiten in der Erfassung der Inanspruchnahme von Gesundheits-und Pflegeleistungen.…”