The University of Exeter’s INCLUDE project, led by our Dementia theme lead Professor Linda Clare, has been announced as one of three finalists for the Alzheimer’s Society Dementia Hero Award for Research 2021. The award is ‘to recognise an individual or group of researchers who have undertaken exceptional dementia research in response to the COVID-19 pandemic’.
Jane Ward, a dementia activist who cared for her mother, nominated INCLUDE having participated in the research as a member of the ALWAYs (Action on Living Well: Asking You) group comprised of people with dementia and carers.
The INCLUDE project studies the impact of the pandemic and lockdown measures on people with dementia and carers, and is wholeheartedly a group endeavour. The team includes a core group of academics at Exeter (from Graduate Research Assistants to Professors), Co-Investigators based at other universities, the ALWAYs involvement group, and, of course, the research participants without whom none of this is possible.
The idea for the coronavirus response came from a member of the IDEAL team’s advisory group who is living with dementia. Keith Oliver encouraged the project to create specific resources around the COVID-19 crisis, seeing the potential of IDEAL’s pre-existing research base to produce practical help.
The team produced two evidence-based leaflets, for people with dementia and carers respectively, with five key messages for staying well during the coronavirus pandemic. Available in 11 languages, they’ve been well-received by a broad community. Programme manager Dr Claire Pentecost said: “The Trusts and people who have disseminated them have said that the leaflets have been really useful, so it gives us a lot of encouragement.”
Galvanised by Keith’s energy, the team started interviewing people living with dementia and then designed a survey to understand the effects of the pandemic and lockdown, and adapted their research processes to interview people with dementia and their carers remotely. The ALWAYs group had keen input into INCLUDE, reviewing the telephone interview processes and adding questions to the survey.
While INCLUDE is a COVID-response project, it has the advantage of building on survey data already collected as part of the broader IDEAL programme, a research project looking at living with dementia over time. Some of the participants have been involved in this research since 2014. Therefore, INCLUDE’s findings will be related back to an established baseline. Prof Christina Victor said: “Our dataset is very valuable and powerful because it builds on that trajectory”. Few other Covid-related studies will have this advantage of being able to compare their findings with pre-pandemic data, so INCLUDE can truly reveal the impact of the pandemic on people with dementia and their carers.
INCLUDE’s work isn’t over yet. The team will not only publish the findings, but are already in discussions with the Department of Health and Social Care (DHSC), and will seek to share recommendations with both policymakers and practitioners. Meanwhile, work is underway to further develop the staying well advice into a Living Well Alongside Coronavirus toolkit with resources and practical ideas on how to make a difficult time better for people with dementia and carers.
Nominator Jane said: “The one thing that’s missing for people with dementia is hope”, and she was motivated to get involved in IDEAL because of its focus on living well with dementia. Jane’s mother was a hugely positive person, who got involved in dementia activism, a legacy Jane continues.
What most excites Jane about the preliminary findings is how important the diagnosis seems to be. Those people who were resilient in adjusting to their dementia diagnosis seem to have coped better with the pandemic. Jane sees the potential of INCLUDE to make a real difference to the care and attention paid to this key moment in the dementia journey.
Good luck to the INCLUDE project as they head for the Awards Ceremony, but more with their mission to discover how best to support people with dementia and carers live well, both through the pandemic and beyond.
The Alzheimer’s Society Dementia Hero Awards 2021 is online at 7pm, 20th May. You can register to attend here.