A collaborative study, led by the University of Glasgow with NHS Research Scotland Neuroprogressive and Dementia Network, Alzheimer’s Scotland, and the Universities of Edinburgh and Dundee, seeks to empower the public by giving them a greater say in directing research funding and resources. This initiative aims to reverse the traditional process where research agendas are set by experts, instead prioritising the concerns of those who stand to benefit most from the findings.
Supported by the Scottish Funding Council through their Brain Health Arc, the project is the first national research priority-setting exercise to consider brain health alongside dementia. Thousands of responses were gathered from surveys, focus groups, and workshops involving individuals living with or at risk of brain health conditions, carers, and professionals. These inputs were refined into two 'top ten' lists for future research: one on dementia and another on brain health.
Key findings highlight a public focus on understanding brain resilience and the factors enabling individuals to maintain healthy brains into older age. This emphasis, alongside questions about financial preparation for dementia care and workforce readiness, signals a potential shift from focusing solely on risks and impairments to a more holistic understanding of brain protection throughout life.
Dementia is Scotland's second leading cause of death, affecting an estimated 90,000 people. The study's findings, particularly the interest in brain resilience, are being shared with government and research funders to ensure future research aligns with public priorities. Several identified issues have already been discussed at a Scottish Government roundtable.
“"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."
Prof Terry Quinn noted that questions extended beyond traditional dementia research, encompassing care organisation, societal preparation, and the fundamental factors of brain health. He added, “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.”
“"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, titled ‘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).
