Shared Decision Making in Dementia: The ShareD Project

The number of people with dementia in the UK is currently 820,000 and set to rise to 1,000,000 by 2021. Government policy advocates patient involvement in decision making, stating “no decision about me without me”.

ShareD is the first study to explore how people with dementia and their carers are involved in decisions in appointments when they receive a diagnosis of dementia. Receiving a dementia diagnosis is a pivotal event in people's lives. Many important decisions – emotional, financial and legal – need to be made regarding care over the dementia journey, some with immediate and others with long-term ramifications.

The study will explore 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. Interviews between doctor, patient and family members present are being filmed and the verbal and non-verbal communication analysed using Conversation Analysis.

Find out more

If you would like to know more about the study, please see our frequently asked questions:

What are we doing?
Why is it important?
Who can take part?
What happens on the day?
Where are we doing the study?

What are we doing?

We are filming appointments between doctors, patients and family members/friends and later analysed to identify what decisions are made and how patients and carers participate in the decision making. These might be decisions about, e.g. how much information the patient would like about their diagnosis, whether to take medication, whether to continue driving, attending a cognitive stimulation group or power of attorney. We also talk to patients and carers about how they felt about the communication and the decisions they made.

Why is it important?

Many important decisions need to be made around the time of first receiving a diagnosis of dementia, some with long-term consequences. Filming appointments means we can identify how this is best achieved. We will make the findings useful for healthcare professionals to guide their communication with patients and carers to increase shared decision making.

Who can take part?

We are inviting people attending memory clinics to take part.

What happens on the day, and afterwards?

One of our team will discuss the study with the patient and their companions. If all parties are agreeable for the research to go ahead, the patient and companion will complete a consent form. Two small cameras will capture the consultation – no researchers are present in the room. Afterwards, one of our team will meet with the patient and family member or friend to ask about their experience of the appointment – this takes about 15-20 minutes. We visit some people at home to have a longer chat about their experience and sometimes film their follow up appointments where further decisions are made. 

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Where are we doing the study?

Please click on the red pin points on the map for details of the clinics where the study is taking place:

Alternatively, you can contact a member of the team.

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