Cancer and dementia: Carers’ perspectives on proxy decision-making
Research type
Research Study
Full title
Exploring the experiences of family carers who have been involved in making proxy decisions about treatment of a new cancer for someone already living with dementia
IRAS ID
252671
Contact name
Catherine Hynes
Contact email
Sponsor organisation
University of Sheffield
Duration of Study in the UK
1 years, 4 months, 27 days
Research summary
Exploring the experiences of family carers involved in proxy decision making about cancer treatment for someone living with dementia
An ageing population means the prevalence of dementia is increasing significantly and family carers provide the majority of support for those affected. Cancer is also age-associated, and causes complex issues when it affects someone with dementia. Family carers often make decisions about cancer treatment on behalf of a relative who lacks capacity to do so for themselves. The psychosocial impact this has on family carers, and their support needs, is under-researched but is set to become an issue that more people will face in the future.
The aims of this study are:
- Explore how family carers of dementia patients are affected when the person they care for is given a cancer diagnosis.
- Explore family carers' experiences of making proxy decisions about cancer treatment for someone with dementia who does not have capacity to decide themselves.
- Identify barriers and facilitators to proxy decision-making about cancer treatment for someone with dementia that carers face, from a primary care perspective.A literature review, expert opinion and carer input will inform development of a topic guide. Adult carers of people with dementia with a recent cancer diagnosis will be recruited via community settings (GP practices and nursing homes) to partake in semi-structured interviews which will then be analysed to identify key themes emerging from the data.
Results will be disseminated via peer-reviewed journals and conferences. We hope this study will inform the development of a tool to support caregivers making proxy decisions about cancer treatment. It will raise awareness amongst Primary Care practitioners about the support needs of carers of dementia patients.
The study is anticipated to last for 17 months. A funding application for £12,857 has been made to the Royal College of General Practitioners Scientific Foundation Board.
REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
18/NW/0851
Date of REC Opinion
5 Feb 2019
REC opinion
Further Information Favourable Opinion