' fill='%23ffffff'%3E%3Cpath d='M283.94,167.31l386.39,516.64L281.5,1104h87.51l340.42-367.76L984.48,1104h297.8L874.15,558.3l361.92-390.99 h-87.51l-313.51,338.7l-253.31-338.7H283.94z M412.63,231.77h136.81l604.13,807.76h-136.81L412.63,231.77z'%3E%3C/path%3E%3C/g%3E%3C/svg%3E%0A){kind=small}
Neuroprogressive and Dementia Network support helps to identify priorities for inclusive future studies
Results of a pilot project supported by the NHS Research Scotland Neuroprogressive and Dementia Network (NRS NDN) are expected to help shape future studies which address a disparity for people living with dementia and co-existing health conditions.
The project, entitled ‘Exploring the Priorities of People with Dementia and Multiple Comorbidities’, saw focus groups set up to identify the most pressing issues for potential person-centred research in that area, with NRS NDN helping to take a lead on its organisation.
Groups of people from all over Scotland living with dementia and other conditions, as well as carers, were invited to participate in a series of focus group sessions, culminating in an event held at Edinburgh’s Dynamic Earth earlier this month.
Successfully identifying over 20 priorities for more inclusive studies, the infographic-based results have now been published by the Global Brain Health Institute which helped to fund the research alongside the Alzheimer's Association and Alzheimer's Society.
A number of NRS NDN’s Partners in Research patient and public involvement (PPI) group were participants, while the group’s Lead, Dr Rosie Ashworth co-facilitated the project with Old Age Psychiatrist and Researcher, Dr Lucy Stirland of the University of Edinburgh.
Lucy said: “While research usually studies dementia in isolation, most people with the condition live with at least two more conditions. That means that, despite being in the majority, people with several co-existing illnesses are often excluded from drug trials.
“We believe there is a need to draw attention to this disparity for future person-centred research and that establishing the key priorities for potential participants with both dementia and other health conditions is vital to a better understanding of what should be targeted or measured.
“This pilot project is considered to be a significant step forward in gaining better understanding.”
The Global Brain Health Institute’s study overview noted that “many dementia research studies look at changes in cognition (memory and thinking), function (how a person manages day-to-day), quality of life, and symptoms such as distress and depression. We don’t know whether these measured outcomes are relevant to people who have dementia alongside other conditions.”
The project saw nine focus group meetings take place across Scotland with participants recruited through NRS NDN. People with dementia and other conditions were in separate meetings to carers of people with dementia, before a final meeting brought together all involved.
Rosie continued: “During the process, we discussed research priorities which had previously been published within the context of the broad spectrum of complexity in dementia.
“At each meeting, participants were invited to build on those and make a list of their preferred outcomes and priorities for future research.
“Lots of different perspectives were offered and all were transcribed and considered prior to Lucy's final priority list being compiled and turned into an engaging, easy to understand infographic.
“We believe it will help other researchers to design studies based on person-centred priorities and are pleased to say that a scientific paper is now being prepared.”
She added: “It was great that the participants were able to meet each other in person at Dynamic Earth to talk over their experience of the study.
“Invited guests from Scottish Government, Alzheimer Scotland, Age Scotland, the Convention of Scottish Local Authorities (COSLA), as well as researchers and doctors, made it a really engaging, diverse, inclusive, and informative event.”
Publication date: 1st April 2025
