Journal
JOURNAL OF ALZHEIMERS DISEASE
Volume 66, Issue 3, Pages 1165-1174Publisher
IOS PRESS
DOI: 10.3233/JAD-180531
Keywords
Access to care; costs; dementia; quality of life; unmet needs; untimely
Categories
Funding
- Germany, Ministry of Education and Research
- Ireland, Health research board
- Italy, Ministry of Health
- Netherlands, Netherlands organization for Health Research and Development
- Sweden, Swedish Research Council for Health, Working Life and Welfare
- Norway, Research Council of Norway
- Portugal, Foundation for Science and Technology (Fundacao para a Ciencia e Tecnologia) [FCT: JPND-HC/0001/2012]
- United Kingdom, Economic and Social Research Council
- ESRC [ES/L008831/1] Funding Source: UKRI
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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.
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