Being a Substitute Decision-Maker for People with Dementia: An Interpretive Description of Education and Support Needs

Many families are affected by the disease of dementia. Because decision-making difficulties are a common symptom of dementia, family members who act as substitute decision-makers, usually step in to make decisions on behalf of their person living with dementia. In this study, substitute decision-makers for people living with dementia were interviewed about their experiences. Based on these findings, an education and support framework for family substitute decision-makers of people with dementia was developed. This framework provides a foundation from which substitute decision-makers can be informed and supported in their role.