First-of-its-kind study shaped by NHS Research Scotland contributors sets new future for dementia
NHS Research Scotland (NRS) expertise has played a key role in shaping a first-of-its-kind study asking people across the country to pinpoint the questions they want scientists to answer about dementia and brain health with the aim of unlocking more targeted research
The study emphasises that “it is important for Scotland, a country that has already been pioneering in equitable dementia and brain health research and policy, to allow the public to set the next targets for research”.
Titled ‘Scottish priorities for dementia and brain health research—results of a national research priority setting exercise’ the study represents the first national research priority-setting exercise to consider brain health alongside dementia.
It is also considered “an important part of making sure future research reflects what matters to society,” according to study author and Clinical Lead for the NRS Ageing Speciality, Professor Terry Quinn.
Authors included NRS Neuroprogressive and Dementia Network Clinical Lead, Dr Tom Russ, the Network’s Strategic Manager, Dr Emma Law, Network Manager, Jacqui Kerr, Co-Chair of ENRICH Scotland, Professor Susan Shenkin—a position also held by Dr Emma Law—and public contributors to the Neuroprogressive and Dementia Network, Winnie Henry and David Ross.
Led by the University of Glasgow in collaboration with the Neuroprogressive and Dementia Network, Alzheimer Scotland, and the Universities of Edinburgh and Dundee, the study underlines the necessity for the public to have a greater say in how research funding and resources are directed.
Currently, research agendas are commissioned and influenced by experts in government, policy and funding bodies. This study sought to make that process more inclusive by asking the people who could ultimately benefit from the research what they believed scientists should investigate.
The research team collated thousands of responses from national surveys, focus groups and workshops from people living with, or at risk of, brain health conditions; current and former carers; and members of the public and professionals. The results were then refined and ranked to produce two ‘top ten’ lists for future research—one focused on dementia and another on brain health.
The study states: “We now urge researchers, funders and decisionmakers to adopt the top ten priority lists and commit to collaborative research efforts that address them. By doing so, Scotland can continue to lead globally in shaping dementia research that truly reflects societal needs and drives meaningful impact.”
The researchers noted a particular focus on the need to understand why some people were able to maintain healthy brains into older age.
The project, supported by the Scottish Funding Council through their Brain Health Arc, highlighted public interest in the potential impact of pursuing further studies into what can be learned from people who maintain a healthy brain into older age.
The researchers hope this question in particular can represent a shift in emphasis from focusing on the risks and brain health impairments to better understanding the factors that may help protect the brain throughout life.
Participants also identified questions extending beyond traditional areas of dementia research, including how people can financially prepare for the possibility of future dementia care; how the workforce should be prepared to meet the future needs of people living with dementia; and what Scotland can learn from countries with different models of brain health and dementia care.
For dementia, improving the pathway of care was mentioned the most, followed by a question over care for people with advanced dementia.
The results are now being shared with government and research funders while several of the issues identified through the exercise have been discussed at a Scottish Government roundtable on dementia and brain health.
Prof Terry Quinn, Ageing Specialty Lead and Professor of Cardiovascular Ageing at the University of Glasgow’s School of Cardiovascular and Metabolic Health, said: “One of the questions that stood out was ‘what can we learn from people who don’t develop dementia?’ Dementia research has understandably tended to focus on what goes wrong—the risks, the disease processes and the decline that people experience.
“However, there are people who maintain good brain health into older age, and understanding what contributes to that resilience could be hugely important.
“Questions were also raised which went beyond the traditional dementia research narrative, with people interested not just in treatments and diagnosis, but in how we organise care, how society prepares for dementia and what keeps our brains healthy in the first place.”
“Giving people a direct voice in deciding the questions we try to answer is an important part of making sure future research reflects what matters to society.”
Dr Tom Russ added: “Dementia is the second leading cause of death in Scotland, with an estimated 90,000 people living with the condition, so changes in strategy are required to help alter that picture.
“We believe this study can lead to important new directions, not only in research but also in societal understanding around how we think about dementia, and how we give voice to those who want to make a vital contribution in treating it as a whole-person brain condition rather than just a set of clinical symptoms.
“The study has shown that the voices of people with lived experience can be key to unlocking valuable new avenues of research.”
The project was part of the Scottish Funding Council Brain Health Alliance for Research Challenges (SFC ARC), with contributions from experts by lived experience, Chief Scientist Office of Scotland leads for Ageing, Neuroprogressive and Dementia, and Enabling Research in Care Homes.
The original press release can be found on the University of Glasgow website.
Publication date: 2nd November 2026
