Shanley, C.

Many people living with dementia eventually lose the capacity to make their own decisions and will rely on another person – a surrogate decision maker – to make decisions on their behalf. It is important – especially with the increasing prevalence of dementia – that the role of surrogate decision maker is understood and supported. This qualitative study explored the experiences of 34 surrogate decision makers of persons living with dementia in Australia. Face-to-face and telephone interviews were conducted over six months in 2014.

The prevalence of dementia will continue to increase with the ageing of the population. Many people living with dementia will reach a stage where surrogate decision-makers-mostly family carers-will need to make a range of decisions on their behalf. The aim of this study was to learn from surrogate decision-makers how they can be most effectively supported in this role. The study employed a qualitative design using semi-structured face-to-face or telephone interviews with a purposive sample of 34 surrogate decision-makers of people living with dementia.

Background For people living with dementia, the capacity to make important decisions about themselves diminishes as their condition advances. As a result, important decisions (affecting lifestyle, medical treatment and end of life) become the responsibility of someone else, as the surrogate decision-maker. This study investigated how surrogate decision-makers make important decisions on behalf of a person living with dementia.