Alzheimer’s Society has announced today that it has committed almost £2 million to the University of Exeter, as part of its biggest-ever single investment in dementia care research, which WISERD will be continuing to contribute to.
The funding will be used for the national collaboration led by Exeter to improve both quality of life for people with dementia, and care in advanced dementia. It will fund a second phase of the large-scale national study entitled Improving the Experience of Dementia and Enhancing an Active Life (IDEAL).
Working with the University of Exeter as part of the IDEAL study, WISERD has been interviewing over 1,500 people with mild-to-moderate dementia from England, Wales and Scotland every year for three years, along with 1,300 carers. Our aim is to understand the reasons why particular social and psychological factors shape people’s experience of living with dementia, for better or worse, and to identify changes that could result in improved well-being and quality of life for both individuals with dementia, and those who care for them.
This qualitative work is essential to the success of the IDEAL study. It enables those with dementia, and their families, to describe what is important to them in relation to living well with dementia, in their own words and on their own terms. It also provides the wider research team with more in-depth detail about how and why certain factors may impact on living well.
The research grant will be invested over five years and will enable expert researchers at the University of Exeter to create a ‘Centre of Excellence’. The Centre will focus on improving quality of life for people with dementia and boost the number of researchers working in the dementia care field.
WISERD Director, Professor Ian Rees Jones said: “We are delighted to be part of the new Alzheimer’s Society Centre of Excellence led by Professor Linda Clare at Exeter University. This important funding provides a unique opportunity to build on our previous work with people with dementia and their carers to focus on the experiences of those people who are living with undiagnosed dementia.
“The Alzheimer’s Society funding will provide WISERD with the resources and support to expand our interdisciplinary research programme in conjunction with colleagues in the new centre so we can include people living with all types of dementia and those from ‘seldom heard’ groups, and their carers.”
Along with allowing the study to run for a further three years, this funding will allow researchers to add the experiences of people from black and minority ethnic backgrounds and people in the advanced stages of dementia. At the end of the study the researchers will use their findings to set out guidelines for how to help people affected by dementia to have the best possible quality of life.
Alzheimer’s Society’s unique investment will allow more researchers to address some of the most pressing issues in dementia care research and put the UK on track to be a world leader in providing the best care possible for people with dementia.
71-year-old Jane Barnes from Sidmouth was diagnosed with Alzheimer’s disease in 2015. She feels that it’s important to know what help is available for people to live well and remain active and independent following their diagnosis. She said: “Things haven’t really changed since I received my diagnosis. I think that’s a good thing. My friends and my husband are very supportive. That helps.
“I don’t beat myself up if I don’t know the date. I don’t feel as though I’ve lost something by not getting the day or the date right. For me, maintaining the friendships with people I’ve known for a long time is essential. That continuity is helpful. I think it’s also imperative to keep on the move, and to socialise, even just going for a little walk feels beneficial. For me that helps improve my quality of life. After all, it’s better than being stuck indoors all day feeling sorry for myself. That would be soul destroying.”
Keith Oliver from Kent, was a successful headteacher when he received a shock diagnosis of early onset dementia at the age of 54. He had to give up work after several months, and has adopted a range of strategies such as meticulous diary keeping to support his busy schedule of work to raise awareness of dementia issues. Keith, who sits on the IDEAL advisory board, said: “Having this large-scale, long-term research is so important to the future of dementia care. I’m really confident that it will produce some excellent information that will feed into people’s care plans when they get a diagnosis of dementia. The more we know about dementia, the better we can support people to live well with dementia.”