UCL Psychology and Language Sciences


Who to tell, how and when project

An intervention to support people living with dementia who are fearful of disclosing their diagnosis to others.

Background to project

There are 850,000 people living with dementia in the UK, with numbers set to rise to 2 million by 2051. Dementia is a syndrome – a collection of symptoms characterised by a decline in and ultimately a loss of cognitive functions. There are several different types of dementia, of which the most common is Alzheimer’s disease. In Alzheimer’s disease there is typically a steady decline in cognitive impairment, this differs in other types of dementia (e.g. vascular dementia) which can cause sudden bouts of decline over time.

One priority identified by people living with dementia and carers is better support following a diagnosis of dementia. Although various organisations are working on funding and providing better post diagnostic support, there is an important step before this that has been overlooked: supporting people to talk about their dementia diagnosis to whomever they want in the way the wish to. For this reason, this research study will adapt the ‘Honest, Open, Proud’ (HOP) programme and evaluate its use in supporting people living with dementia who are fearful of disclosing their diagnosis to others.

The project is currently in the design phase and to this end, we have launched a public consultation survey. Results of this survey will highlight the barriers people living with dementia face when disclosing their diagnosis, and will inform which specific barriers to tackle in the ‘Who to tell, how and when’ intervention, ensuring that the intervention is grounded in the preferences and needs of its end users.

How can you get involved?

A public consultation: who to tell, how and when?

We want to create an intervention to help support people with dementia in talking to others about their diagnosis. By participating in this consultation, you guide the direction of our research. The survey will take 5-15 minutes to complete.

We want this survey to gather your thoughts and views. Only answer questions if you want to. If you would like to stop at any point just close the browser. This survey is anonymous.

Survey Link: goo.gl/ncPUeC

If you have any questions about this public consultation or study please feel free to contact:

Jem Bhatt

Clinical, Educational and Health Psychology

University College London

Direct Telephone: 020 7679 8275

Email: jemini.bhatt.15@ucl.ac.uk

Becoming a Research Advisor

Are you a person living with dementia?

Are you a supporter of someone living with dementia?

Would you be interested in sharing your thoughts on research projects?

Do you want to influence policy and research?

At University College London we are starting a new group for people living with dementia and families and carers who would like to be meaningfully involved in research.

Throughout the research process, we would like to hear from professionals that work with people living with dementia across various domains. Would you be interested in signing up as a stakeholder for the ‘Who to tell, how and when’ programme?

To find out more please contact Jem Bhatt on 020 7679 8275 or via email jemini.bhatt.15@ucl.ac.uk.