The DECIDE Study: Phase Two. Version 1
Research type
Research Study
Full title
The DECIDE Study: Dementia carers making informed decisions: Phase Two. Version 1
IRAS ID
162996
Contact name
Kathryn Lord
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2014/11/32, UCL Data Protection Registration Number
Duration of Study in the UK
1 years, 11 months, 30 days
Research summary
Asking people to make decisions about the future and preferences for place of care can be particularly difficult and stressful, requiring individuals to consider a number of hypothetical circumstances with several potential outcomes. In the case of dementia, a very common process is the loss of capacity to make decisions. This responsibility often then falls to the dementia patients relative to be involved in decision making about healthcare choices and an advocate for the dementia patients’ wishes. Decisional conflict, which refers to an individual’s uncertainty about the course of action to take, is a common issue for many carers. Work is needed to enable healthcare professionals to facilitate these decisions with family members about living arrangements and future place of care in order to try and reduce the
difficulties for all involved.This PhD is divided into two work streams, in work stream one (approved by NRES Committee London – Bloomsbury, REC reference: 14/LO/0012, 15th January 2014) we developed a toolkit to facilitate conversations about living arrangements and place of care decisions with carers of people with dementia. Semi-structured interviews with purposively selected carers and individuals with dementia were conducted and clinicians were consulted about this guide through multi-disciplinary focus groups.
In work stream two, (which this ethics application concerns) we plan to conduct a feasibility randomised controlled study to evaluate our criteria for success for proceeding to a full, pragmatic trial to test the effectiveness of the toolkit in reducing decisional conflict. This is to our knowledge the first study to evaluate a resource to help dementia family carers make proxy decisions about place of care.
The information below describes work stream two for which we are requesting ethics permission.
REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
15/NE/0015
Date of REC Opinion
14 Jan 2015
REC opinion
Favourable Opinion