Discussing a diagnosis of dementia with people with learning difficulties

Research project: Let’s talk about dementia and address the lack of information by producing an information pack aimed at people with learning difficulties.

Lead Investigator: Dr Karen Watchmen    
Institution: University of West of Scotland
Grant type: Dissemination Grant
Grant amount: £14, 026
Start date: September 2014
Completion date: February 2016

What was the project, and what did the researchers do?

One in three people with Down’s syndrome will develop dementia over the age of 50; this is at a significantly younger age and in higher numbers than the population generally.

Research has identified that a diagnosis of dementia is not often shared with people who have a learning disability, due to lack of appropriate, accessible information.

The project team wanted to address this lack of information by producing an information pack aimed at people with learning difficulties.

Jenny’s Diary is a free pictorial booklet and set of postcards to support conversations about dementia with people who have a learning disability.

Jenny’s Diary was developed in collaboration with Hansel, a Scottish charity organisation.

The booklet consists of three parts.

  1. The first explains a typical week for Jenny, what is changing as dementia progresses and how this impacts on both Jenny and her partner.
  2. The second part describes a 4-step approach to talk to Jenny about dementia.
  3. The third part contains strategies for talking to Jenny’s partner or friends about the changes she is experiencing.

What were the key results, and how will this help in the fight against dementia?

The Jenny's diary information pack and website have proved very popular, and have facilitated conversations regarding dementia diagnosis in people with learning disabilities.

  • An advisory board was developed consisting of people with a learning disability, family carers, service providers, health and social care practitioners. The board provided information and guidance on the content of Jenny’s diary, as well as help to distribute the product once complete.
  • A website was developed to house Jenny’s diary.
  • Four one-day training sessions have been delivered in Scotland, and one in England based around Jenny’s Diary and talking about dementia with people who have a learning disability. Training was carried out for learning disability staff, allied health professionals and care home staff.

Providing good quality materials to help conversations about dementia with people with learning difficulties will increase understanding of dementia within this group of people. Hopefully this takes away some of the confusion and unrest that can be felt when dealing with a diagnosis of dementia. It will help families, loved ones and carers, as well as healthcare professionals to find the words to begin what can often be a difficult, but necessary discussion. 

What happened next? Future work and additional grants

Additional content has already been added to the Jenny’s diary website. For example, the project leader wrote a blog for Alzheimer Scotland entitled ‘6 points to consider before talking with someone who has a learning disability and their partner about dementia’. This has been added to the Jenny’s Diary webpage as a video explaining more about the project. 

Jenny’s Diary is cited as a good practice recommendation in the Dementia and Equalities NHS Health Scotland report which will inform the 3rd dementia strategy in Scotland in 2016. 

How were people told about the results?

Conferences and Publications

A press release was issued in October 2015 containing information about the project and how to access a copy of Jenny’s Diary. This was followed by media coverage including local press and both printed and online articles:

  • News story – Paisley Daily Express, 8th October 2015
  • Learning disability practice – September 2015, Volume 18, Number 7
  • Jenny’s diary has been shared with learning disability, adult nursing and Later Life Studies students at UWS, many of whom have reported positive feedback after sharing with placement staff or employers. 

Jenny’s Diary is also available at a number of NHS, university and social care institutions and in the USA, the National Task Group on Intellectual Disability and Dementia have incorporated Jenny’s Diary into a national two-day training programme: ‘Dementia Capable Care of Adults with Intellectual Disabilities’.

Invited keynote presentations 
Learning disability, dementia and ageing, Lothian NHS/Social work, May 2016 

Intellectual disability and dementia - with a specific request to focus on talking about dementia and Jenny’s Diary. Department of Medical Sociology and Social Work at Kaohsiung Medical University, Taiwan, 2016 

Conference abstracts

  • British Society of Gerontology UK conference - Jenny’s Diary: an evidence-based approach to support conversations about dementia with people who have a learning disability. Karen Watchman, Irene Tuffrey-Wijne and Sam Quinn
  • Alzheimer Europe 2016 - Jenny’s Diary: An evidence-informed approach to support conversations about dementia with people who have an intellectual disability. Karen Watchman
  • Poster presentations
  • Alzheimer Scotland Dementia Awareness Week Conference 2016 
  • Scottish Dementia Congress 2016
  • View the Jenny's Diary resource

Jenny’s Diary was winner of the Self Management resource of the Year Award 2017.

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