Welcome

Our inclusive team of co-researchers at the University of Stirling, Scotland recognise that dementia matters to people with a learning (intellectual) disability. I have collaborated over many years with people who have a learning disability, family members and staff to develop a range of resources, training and accessible information based on research. This website has been developed to share some of this learning and resources about how dementia may affect people with a learning disability. You may have attended our end of project conference for people with a learning disability in March 2020, 'Living Well with Dementia' where we talked about what helped participants and tried some of the ways in which people with dementia may be supported to live well including music reminiscences and robotic and real animals - it was an interactive day!

By using the menu to the left (or above left on some mobile devices) you will see that the pages on this website tell the story of different areas of my work in practice and higher education over many years. This includes the chance to download Jenny's Diary in a range of formats and languages, and to read a series of reports from the 2016 international summit on learning disability and dementia. My previous roles include Chief Executive of Down's Syndrome Scotland and Depute Director of the Alzheimer Scotland Centre for Policy and Practice, University of the West of Scotland. Both roles, and my current position, have a strong focus on public engagement, understanding lived experience, making complex information more accessible, and disseminating research and learning through a range of channels. I was delighted to work with Down's Syndrome Scotland again recently to evaluate their life story project.
Download life story project evaluation report

There is not a consistent approach to providing post-diagnostic support for people with a learning disability and dementia. I have recently led a team of disabled and non-disabled researchers investigating non-drug interventions with people who have a learning disability and dementia. Co-researchers with a learning disability learnt to use photovoice methodology. Photovoice is a way of describing realities and communicating perspectives. In this study, it involves taking photographs as a way of sharing knowledge by experience of having a friend with dementia. This project was highly commended in the Community Champions category of the Scottish Learning Disability Awards, 2020 hosted by the Scottish Commission for Learning Disability.

Watch our award video. Award video
For information on the project you can visit our website. Project website
Our first publication focused on how we used and adapted photovoice in the study. Photovoice article
The second article included information about the wider study and includes an easy-read version as supplementary material.

Article about the implementation study Easy-read summary

The resource Supporting Derek, originally produced in 2010, was updated in 2018 and is now available as part of a training pack with a link to download the short video featuring Peter and Derek. See the publishers website for more information:

Supporting People with Learning Disabilities and Dementia Training Pack - Training Pack
Supporting People with Learning Disabilities and Dementia - Self-study Guide Self-study Guide

Please scroll further down the page for examples of my blogs, interviews and publications.

Karen