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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.

Contact Information:

Dr Joseph Webb
+44 (0)117 428 2489
joseph.webb@bristol.ac.uk


Dr Jemima Dooley
+44 (0)117 456 0235
jemima.dooley@bristol.ac.uk


Dr Jillian Powell
None provided
Jill.Powell@bristol.ac.uk


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Be Part of Research - Trial Details - The Forget Me Not Approach: Improving the communication of a dementia diagnosis.
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The Forget Me Not Approach: Improving the communication of a dementia diagnosis.

Not Recruiting

Open to: All Genders

Age: Mixed

Exeter Gateshead

Medical Conditions

Dementias and Neurodegeneration

This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.


One in three people are likely to develop dementia during their lifetime. Early diagnosis can help with accessing support and improve the quality of life for people living with dementia. Delivering a diagnosis of dementia can be stressful for medical professionals. However, this can result in unclear communication of a diagnosis and leave patients and people who care for them, uncertain of what is causing memory problems. There is very little communication training available for dementia diagnosis. The aim of this study is, therefore, to develop training videos in collaboration with people who are living with dementia to improve the experience of receiving or delivering a dementia diagnosis.

Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.  

The recruitment start and end dates are as follows:

14 Aug 2023 30 Sep 2024

Stage 1: People who have received a diagnosis of dementia in the past two years will be asked to take part in a workshop with other people who have dementia and their companions. They will be shown three videos of medical professionals giving a diagnosis of dementia. They will then be asked to take part in an open discussion about the videos to find out what could be improved in communicating a diagnosis of dementia. Workshops will last 2 hours. We will use the information identified in these workshops to make training videos.

Stage 2: The research team will develop training videos which will be free to access.

Stage 3: Researcher will show participants the accessible communication videos of dementia diagnosis after they have visited the memory clinic but before they have received their diagnosis feedback. The researcher will contact them again after their diagnosis feedback meeting to hear about their experiences and find out how the communication videos impacted this experience.


People and their companions attending (or who have attended) memory clinics, and medical professionals who regularly deliver diagnoses of dementia.

You can take part if:



You may not be able to take part if:


People with dementia who received a diagnosis of dementia over 2 years ago


Below are the locations for where you can take part in the trial. Please note that not all sites may be open.

  • Wonford House Hospital
    Dryden Road
    Exeter
    EX2 5AF
  • Queen Elizabeth Hospital
    Sheriff Hill
    Gateshead
    NE9 6SX

The benefits include the following:
1. Participants in stage 1 will get the opportunity to meet other people who have had similar experiences of a diagnosis and are subsequently living with dementia.
2. Medical professionals will get the chance to reflect on their practice with others.
3. Participants in stage 3 will hopefully benefit through their use of the guidance videos, which is hoped will add clarity to the diagnosis process.
1. It is possible that groups will discuss aspects of a dementia diagnosis that are difficult or upsetting.
2. Participants may have communication difficulties and could find it hard to interact in workshops, especially those held virtually. This could lead to frustration and/or upset.
3. Participants could find interviews and workshops tiring, especially if they have a diagnosis of dementia.
Care will be taken to ensure that people have sufficient breaks and feel comfortable to raise concerns and leave the meeting if needed. Researchers will direct participants to resources collected on the Dementia Empowerment and Engagement Project (DEEP) website that may be useful for signposting to other national services that can offer support. Participants will also be supported to find advocacy and research groups in their areas.
To help with communication difficulties, all participants will be given a booklet in advance of the workshops, covering topic areas and space to write their notes regarding points they wish to make. Participants will also be sent a colourful sign that can be held up to indicate they would like to talk during the focus group, as recommended by DEEP and the Alzheimer’s Society.

Dr Jemima Dooley
+44 (0)117 456 0235
jemima.dooley@bristol.ac.uk


Dr Joseph Webb
+44 (0)117 428 2489
joseph.webb@bristol.ac.uk


Dr Jillian Powell
None provided
Jill.Powell@bristol.ac.uk



The study is sponsored by University of Bristol and funded by Research for Patient Benefit Programme.



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Read full details for Trial ID: ISRCTN58124004

Or CPMS 57526

Last updated 23 October 2024

This page is to help you find out about a research study and if you may be able to take part

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