Supporting family carers of people with dementia at the end of life
Research type
Research Study
Full title
Supporting family carers of people with dementia at the end of life: Developing a decision aid
IRAS ID
236620
Contact name
Nathan Davies
Contact email
Clinicaltrials.gov Identifier
Z6364106/2018/01/67 , UCL Data Protection Number
Duration of Study in the UK
1 years, 1 months, 30 days
Research summary
Background: Despite efforts to increase planning for end of life with people with dementia, many reach the end of life without having made an advance plan. This leaves many decisions for families. Family carers often do not know how to approach such conversations and difficult decisions. Many are left feeling uncertain or guilty about decisions they are making or made.
Aim:The aim of this study is to understand which decisions family carers need to make at the end of life for someone with dementia, and develop a decision aid for family carers of people with dementia at the end of life at home and in care homes.
Methods: The decision aid will be grounded in the experiences of family carers. This study will consist of three work streams (WS): WS1 will be a scoping review of existing studies to identify decision aids which have been developed for end of life across conditions and alongside this a systematic review specifically focussing on decision aids aimed at dementia will be conducted; WS2 will be an analysis of existing interviews collected from previous studies with family carers and practitioners which have explored quality end of life care for people with dementia, supplemented by interviews with family carers and people with dementia excploring which decisions need to be made towards the end of life and how these should be made; WS3 will be a series of workshops with family carers, practitioners/professionals and people with dementia to synthesise the findings from WS1 and WS2 to develop a decision aid.
Outcomes: This Fellowship will produce a practical decision aid to help family carers make difficult decisions at the end of life. This may have benefits for carers as it can be useful when planning for the future but also for times of crisis.
REC name
London - Queen Square Research Ethics Committee
REC reference
18/LO/0408
Date of REC Opinion
4 Apr 2018
REC opinion
Further Information Favourable Opinion