Developing a tool to help people decide how to talk about their dementia diagnosis

Lead Investigator: Dr Georgina Charlesworth
Institution:  University College London
Grant type: PhD studentship
Duration: 36 months
Amount: £77,036 (Alzheimer’s Society is funding half this amount, alongside UCL)
Scientific Title: Who to tell, how and when?: an intervention to support people with dementia who are fearful of disclosing their diagnosis to others

Why did we fund this project?

Comments from members of our Research Network:

'Supporting individuals with their diagnosis and expressing their feelings around their diagnosis to others, is a very under resourced area'

'A worthwhile area of research which could provide a useful tool for the dementia community.'

'An interesting proposal and a different approach to lessening the stigma that still exists around being diagnosed with dementia.'


What do we already know?


Telling others about a diagnosis of dementia can be difficult for the people affected due to the stigma that is still associated with the condition. The fear of talking about a diagnosis to friends and family can stop people accessing vital help and support to live well with dementia. 

There are tools to support people in discussing and disclosing a diagnosis related to their mental health. One of these tools, called the ‘Honest Open Proud’ programme, has been shown to reduce people’s distress about their diagnosis. However, there are no specific tools for people with dementia.


What does this project involve?

The PhD student on this project will develop and test the Honest Open Proud (HOP) programme as a dementia-specific tool .This will help to support people to choose when and how to tell others about their diagnosis.

The PhD student will look at existing information available on decision-making specifically around diagnosis and support tools for people with dementia and their carers. Then, with the help of people affected by dementia, they will adapt and develop the HOP programme specifically for people with dementia. The student will conduct surveys, focus groups, interviews and workshops to develop the accompanying manual.

Before the new programme is tested by a small group of people, it is important to have the right measures to test if the tool works. The PhD student will review existing ways for assessing stress and distress caused by receiving a diagnosis, as well as tools that measure fear of disclosing a diagnosis. These will then be used to evaluate the new dementia-specific programme in a small group of people to see if it works and how it can be improved. 


How will this benefit people with dementia?

The new programme has the potential to help people decide who to tell about their diagnosis, how and when, lifting the burden and fear of a discussing a diagnosis of dementia. It is important people feel able to discuss their condition with friends and family, without fear or stress, and access all opportunities available to them.