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Fetherstonhaugh, D.

“Did I make the right decision?”: The difficult and unpredictable journey of being a surrogate decision maker for a person living with dementia

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.

Wed, 10/09/2019 - 09:42

Identifying support needs to improve rural dementia services for people with dementia and their carers: A consultation study in Victoria, Australia

Objective: The support and service needs of people with dementia and their carers are not always addressed in rural regions, yet family carers play an important role in supporting the person living with dementia to remain living in their own home. This study sought to identify and prioritise service and support needs of people with dementia and carers. Design: A two-phase mixed methods study involving qualitative focus groups and a survey. Setting: A rural region in Victoria, Australia.

Fri, 06/07/2019 - 12:34

Providing support to surrogate decision-makers for people living with dementia: Healthcare professional, organisational and community responsibilities

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.

Wed, 05/15/2019 - 09:24

Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide?

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.

Mon, 03/25/2019 - 12:28

Social participation and family carers of people living with dementia in Australia

This paper reports on a study exploring the experiences and meaning of social participation for family carers of people living with dementia. Participants were 33 family carers (17 spouses and 16 adult children) of older adults diagnosed with dementia (any stage or type) who responded to advertisements by the national Alzheimer's association, Alzheimer's Australia. Data were collected through semi-structured face-to-face and/or telephone interviews using an interview guide, which included prompts such as ‘Tell me about what social participation means to you’, and ‘How did this change…’.

Thu, 07/20/2017 - 15:11