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The "Who to tell, how and when?" Intervention

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

Background to the 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?

There are currently two opportunities to get involved in our research:

 

1) Investigating the impact of stigma on people living with dementia: A questionnaire study

Are you a person living with dementia?

Would you like to get involved in research by completing our survey, which seeks to increase our understanding of the possible impact of stigma on people living with stigma?

We are inviting those who have a primary diagnosis of dementia and have capacity to provide informed consent, to take part in this questionnaire study.

You will not be eligible to take part if you:

  • Do not have capacity to provide informed consent for the study
  • Have any significant health problems that require care from others such as a chronic illness in which you are in the later stages
  • Experience sensory impairments to the extent that you would not be able to participate or engage in answering the questionnaires of this study. 

You can participate online using this link:

https://goo.gl/kgFmwC

Or you can contact Jem Bhatt if you would like more information or would prefer to complete the survey jointly with a researcher:

Jem Bhatt
Clinical, Educational and Health Psychology
University College London
Tel: 020 7679 8275
Email: jemini.bhatt.15@ucl.ac.uk

2) Living with dementia and not sure what to say?

Are you living with dementia and finding it hard to talk about the diagnosis? If so, you and a supportive friend or family member are invited to attend a “Who to tell, how and when?” talking about diagnosis group. This small group runs for 3 weeks. Each session will be 90 minutes long. The sessions will cover the following topics:

Session 1: Talking about dementia

Session 2: Who, how and when to tell

Session 3: Support for me, for you, for us
The groups are free and refreshments will be provided.

Sessions will take place at Age UK, Tavis House, 1-6 Tavistock Square, London, WC1H 9NA on:

· Monday 4th February 2019 1:30-3pm
· Monday 11th February 2019 1:30-3pm
· Monday 18th February 2019 1:30-3pm


The aim of the group is to help people feel more comfortable talking about the diagnosis.

As this is a new group UCL is undertaking an evaluation. Attendees will be given the option to take part in an interview that will ask them about their experiences of the group. If you would like to attend, please contact Jem Bhatt, PhD Student, UCL jemini.bhatt.15@ucl.ac.uk, Tamatha Ruffell, trainee Clinical Psychologist, UCL at tamatha.ruffell.16@ucl.ac.uk