College of Medical, Veterinary & Life Sciences

In a first of its kind study, researchers have asked people from across Scotland what questions they want scientists to answer about dementia and brain health, in the hope of driving forward better and more meaningful research in the future. 

The study – led by the University of Glasgow in collaboration with NHS Research Scotland Neuroprogressive and Dementia Network, Alzheimer’s Scotland and the Universities of Edinburgh and Dundee – aims to give the public 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 turn that process around by asking the people who could ultimately benefit from the research what they believed scientists should investigate. 

The project, which was supported by the Scottish Funding Council through their Brain Health Arc, is also the first national research priority-setting exercise to consider brain health alongside dementia. 

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.

While the findings reveal a number of priority research questions from the Scottish public, the researchers noted a particular focus on the need to understand why some people were able to maintain healthy brains into older age.

Among the questions raised by the public and judged by the researchers to have the greatest potential impact included further studies into brain resilience – exploring what can be learned from people who maintain a healthy brain into older age. 

Dementia is the second leading cause of death in Scotland, with an estimated 90,000 people living with the condition. The researchers hope this question in particular represents a shift in emphasis from focusing on the risks and impairments to brain health to better understanding the factors that may help protect the brain throughout life.

However, participants also identified questions extending beyond traditional areas of dementia research, including how people can financially prepare for the possibility of future dementia care (this and brain resilience received the joint-highest scores among the brain health questions); 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 to help ensure future research speaks to the priorities of the people it is designed to help. Several of the issues identified through the exercise have subsequently been discussed at a Scottish Government roundtable on dementia and brain health.

Prof Terry Quinn, Professor of Cardiovascular Ageing at the University of Glasgow’s School of Cardiovascular and Metabolic Health, said: “There are many unanswered questions in dementia, and we wanted to ask the Scottish public what they thought were the most important research questions in brain health.

“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.” 

“Scotland has already been ambitious in its approach to brain health and dementia. 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.”

Fenna Lunter MD, a visiting researcher from The Netherlands, and a co-author on the study, said: "It was great to see how many people were willing to put in the effort to engage with all steps of the priority setting process. I think it shows that the Scottish public wants to be involved in research, and setting a research agenda. Having the opportunity to give them a voice has been really rewarding."

The study, ‘Scottish priorities for dementia and brain health research – results of a national research priority setting exercise,’ is published in xxx. 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.

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Enquiries: ali.howard@glasgow.ac.uk or elizabeth.mcmeekin@glasgow.ac.uk

First published: 20 October 2026