Involving People Living with Dementia

Much of my work is related to enabling the voices of people with dementia to be heard, by health and social care staff and organisations and by researchers.  People with dementia speak about almost become invisible or disregarded when they receive a diagnosis of dementia, and yet who else other than people with dementia have the knowledge and expertise to know what it’s like to have the condition and to know what services and research are needed to help them live with dementia?

I had the opportunity to explore how health and social care services might be better able to involve people with dementia whilst working in the Collaborations in Leadership for Applied Health Research and Care – South Yorkshire (now Yorkshire and Humber).  A summary of the project and outcomes can be viewed here and a report we wrote can be found in the link that follows Involving People with Dementia Project final report April 2013.

We made a film called the Voice of Dementia related to this work, it has been used by the Alzheimer’s Society and by academic organisations and health services to educate staff and students.

When I started that project I could not have imagined how it would grow and develop, largely through ideas and suggestions from people with dementia and their family carers.  One outcome of the project was the establishment of a city wide involvement group for people with dementia, this group became known as Sheffield Dementia Involvement Group – shortened to SHINDIG due to the social atmosphere created at each event.  The logo became a boat, as never a SHINDIG passes without someone saying:

“The great thing about SHINDIG is we are all in the same boat.”


Details of SHINDIG, along with summaries of the discussions held can be found at the SHINDIG webpage.

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