Public preferences for home care services for people with dementia: A discrete choice experiment on personhood

Abstract

Dementia is a progressive and debilitating neurodegenerative condition which significantly impacts on quality of life and the ability to live independently. It is a leading cause of disability in older populations and carries significant economic and social costs. It is no wonder, therefore, that dementia has been identified as a major global health and social care challenge, especially with prevalence projected to triple by 2050. In many countries, the stated policy aim is to care for people with dementia in their own homes for as long as possible and practicable. However, home care systems vary significantly across countries in their approach to personhood in dementia, particularly the extent to which care provision reflects the needs and preferences of recipients. In this paper, we undertook a discrete choice experiment, with data collected from 551 individuals in Ireland between November and December 2018, to elicit public preferences for personhood-oriented home care services for people with moderate dementia. We capture the concept of personhood with two attributes, one that refers to whether care provision is flexible and tailored to the individual needs of the person with dementia, and a second that refers to whether communication with the person with dementia is expressed in a personalised manner. Using mixed logit models, we find that flexible service provision, personalised communication and increased home care hours are highly valued by citizens. While people are indifferent to a means-tested co-payment for home care relative to no co-payment, they are opposed to a universal co-payment. We also estimate the welfare impact of a move from the status quo to alternative personhood-oriented home care arrangements, providing useful insights for policymakers regarding the future design and funding of home care services. The paper has significant implications for the recalibration of health and social care systems towards personhood in dementia care.