An account of personal autonomy for people living with dementia

People living with dementia see autonomy as central to their well-being, and loss of autonomy is one of the things people diagnosed with dementia fear the most. Effective support of autonomy requires us to understand carefully what autonomy is and to structure care plans and health policy in accordance with that understanding. Many recent social scientific studies of autonomy in people with dementia do not carefully operationalize the term "autonomy." This is problematic because autonomy is a highly ambiguous term that points to a complex reality. We distill from the relevant philosophical and empirical literatures a conceptually clear and empirically informed account that is relevant to the experience of people living with dementia.

We present a general account of the concept of personal autonomy, drawing on existing philosophical literature. We then test the relevance of this account via a scoping review of empirical research reporting on the experience of personal autonomy in persons living with dementia.

With the assumption that adequate relational supports are in place, all aspects of our philosophically informed account of personal autonomy (decisional autonomy, authenticity, and executional autonomy) are compatible with the experience of persons living with dementia.

With adequate relational support, personal autonomy remains an achievable goal even in contexts of moderate to severe dementia. A conception of personal autonomy that is both theoretically and empirically informed can help guide efforts to study and support personal autonomy in persons living with dementia.