Living with Dementia Toolkit – IDEAL Research Programme

South Devon UTC Year 10 and 12 Health and Social Care students had the opportunity to speak to the experts by experience behind the Living with Dementia Toolkit. This free resource is one of the many outputs from the IDEAL research programme, based at the University of Exeter. 

IDEAL has been working with people with mild-to-moderate dementia and their carers living in the community since 2014, to understand which things make a difference to living a good life with dementia. Over 1500 people with dementia and over 1200 carers from across Great Britain participated in the research. The Living with Dementia Toolkit – which was co-produced with people living with dementia and carers – is a key means of sharing findings from the research and offer people practical tips for everyday life.

Former teacher Dr Catherine Charlwood (IDEAL Research Translation and Impact Manager) has been working with South Devon UTC Head of Faculty for Health Science, Martine Carthew to bring together College students and the Toolkit involvement group. Catherine said “It was wonderful to witness these two groups inspiring each other. The more we talk about dementia, the more understanding we can foster and this event demonstrated that. People with dementia often ask for the opportunity to speak to young people, but this can be tricky to organise. I’m excited to showcase this footage as part of the Toolkit and bring hope to many more people.”

UTC Students spoke to six members of the Living with Dementia Toolkit involvement group: Allison, Chris, David, Keith, Jane and Julia. The session meant a great deal to these experts by experience. 

Allison, who lives with dementia and dialled in from Northern Ireland, said “It is massively important to talk to young people about dementia. This is the only way to break down preconceived ideas about what living with dementia is like. So many people, including professionals, think only of end-stage dementia and believe that once you get a diagnosis you can do nothing. We need to get the message across that you must ask us what we need and want & not presume you know what is best.

Being involved in this session was an absolute joy. I loved every minute of it and the students asked us some brilliant questions. Thank you for giving us the opportunity to speak with the students.”

Keith, a former headteacher who lives with dementia, said “I think it is extremely important to speak with the young citizens of tomorrow. Whether these young people choose to go into a career in the care business, choose to study dementia at college or university, have a family member now or in the future diagnosed with dementia or live in a community where they almost certainly will meet someone knowingly or not who has dementia is very important that they hear the experiences such as those from the diverse ALWAYS group.

Young people energise older folks like me by their youthful enthusiasm and interest alongside displaying intelligence and maturity beyond their years.”

The session was filmed and will appear on the Living with Dementia Toolkit and we hope will inspire further intergenerational conversations between people with lived experience and the healthcare workers of tomorrow. 

Martine Carthew said “This is a fantastic opportunity for our Health and Social Care students, and we are delighted to take part in the filming of the Dementia Toolkit which will be an invaluable resource for dementia carers, professionals and for the many people living with dementia. 

It’s been a real privilege to have been involved with the Ideal Project, as a Health & Social Care educator I have found the experience of watching our young future health and social care professionals engage in such an empathetic manner with those living with dementia truly heart-warming.  The honest and touching accounts of the lives of the people taking part in the project were inspiring and I know that this partnership will benefit all who take part. Thank you to the Dementia Involvement Group in giving us a real insight into this condition.”

The University of Exeter-led programme Improving the Experience of Dementia and Enhancing Active Life (IDEAL) has received funding from Alzheimer’s Society, the Economic and Social Research Council (ESRC) and the National Institute for Health Research. The project, recognised as an Alzheimer’s Society Centre of Excellence, seeks to understand, and find ways to improve, the experience of living with dementia. The study recruited 1,547 people diagnosed with mild to moderate dementia and 1,283 carers and is following as many as possible over seven years. The Living with Dementia Toolkit was developed in partnership with Innovations in Dementia CIC and also acknowledges the support of the NIHR South West Peninsula Applied Research Collaboration (PenARC).