ShareD is the first study to explore how people with dementia and their carers are involved in decisions when they receive a diagnosis of dementia.
The project is funded by the NIHR and sponsored by Devon Partnership NHS Trust. Project Lead Professor Rose McCabe is working with colleagues from Queen Mary University of London and UCL. She discusses the study in the video above.
820,000 people in the UK currently have dementia, and the number is set to rise to 1,000,000 by 2021. Government policy advocates involving patients in decision making about their own care, stating “no decision about me, without me”.
Receiving a dementia diagnosis is a pivotal event in people’s lives. Many important decisions – emotional, financial and legal – need to be made about care over the dementia journey, some with immediate and others with long-term ramifications.
Family carers are also often involved in treatment discussions and decisions to support the patient, so respecting and balancing the preferences and views of both patients and carers is key.
Project aims and activity
This study is exploring how people with dementia are being involved in decisions, with a focus on the critical time around the early stages where there is the opportunity and capacity to make choices about their future care. These choices can include whether to take medication, how much information the patient would like about their diagnosis, and decisions about power of attorney. The research team are working closely with the Alzheimer's Society
Interviews between doctors, patients and family members in Exeter and London are being filmed, and the verbal and non-verbal communication analysed using Conversation Analysis. Findings will aim to help guide healthcare professionals’ communication with dementia patients.
Find out more about the project on the University of Exeter Medical School website.
PenCLAHRC supports a programme of work on the topic of dementia and dementia care. You can find out more about this work and the projects that make up this programme on our Dementia Care Research Programme pages.
Dooley J, Bass N, McCabe R. How do doctors deliver a diagnosis of dementia in memory clinics?. The British Journal of Psychiatry 2018; 212(4):239-245.