Shared decision making in mild to moderate dementia.
Research type
Research Study
Full title
Shared decision making in mild to moderate dementia
IRAS ID
123466
Contact name
Rose McCabe
Contact email
Sponsor organisation
Devon NHS Partnership Trust
Duration of Study in the UK
3 years, 3 months, 30 days
Research summary
Background: Three-quarters of a million people in the U.K. have dementia and this is set to rise to 1 million by 2021. The recent government white paper has a strong drive for patient involvement in decision making, stating “no decision about me without me”. This ethos is especially important in the early stages of dementia, when important emotional, financial and legal decisions need to be made. However, the involvement of dementia patients in treatment decisions can become a complex process when the patient’s judgment, understanding and memory are affected. Nonetheless, patients with dementia want to be involved in decisons about their care. In general, family carers are also involved in treatment discussions and decisions to support the patient. Respecting and balancing the preferences and views of both patients and carers is key. However, there has been no study exploring how this happens and the extent of involvement of dementia patients and carers in decisions in clinical consultations.
Method: Patients’ and carers’ preferences for involvement in decision making will be assessed. Video recordings of meetings with professionals in memory services will be rated to identify the level of shared decision-making and how this varies depending on the decisions. Using a detailed method to analyse what people say and how they say it, we will identify what types of clinician communication facilitate involvement of patients and carers in decision making. Patient and carer satisfaction with decision making will be assessed after the consultation. Focus groups will be conducted with professionals, and interviews will be conducted with patients and carers, to explore their perspectives on challenges and facilitators of shared decision making.
Project outcomes: This project will identify evidence to inform best practice in how to communicate with patients with mild to moderate dementia and carers to optimise their involvement in shared decision making.
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
13/LO/1309
Date of REC Opinion
23 Oct 2013
REC opinion
Further Information Favourable Opinion