Public and health professionals name their top 10 research priorities for dementia and hearing loss
People living with both dementia and hearing loss say the most important questions they would like answering include whether routine health checks or better training for healthcare professionals would improve their care.
Researchers from Nottingham working with Alzheimer’s Research UK and RNID (the Royal National Institute for Deaf People), set out to ask people living with these conditions, their families and clinicians what future research would have the biggest impact for them. In the last 18 months, hundreds of people have shared their priorities, resulting in a list of "Top 10" research questions.
Investigators from the NIHR (National Institute for Health and Care Research) Nottingham Biomedical Research Centre (BRC), and the University of Nottingham conducted the exercise with the James Lind Alliance (JLA), as part of a Priority Setting Partnership (PSP). The PSP methodology is designed to bring the needs of people with experience of health conditions together with clinicians.
The final top 10 research areas included the questions: ‘Should routine health checks in adults assess both hearing and cognition?’ and ‘What training would help health professionals provide appropriate support and communicate effectively with people living with both dementia and hearing conditions?’
Another key question identified during the PSP process was: ‘What actions can people who have hearing loss take to reduce their risk of developing dementia?’
Dr Eithne Heffernan, Senior Research Fellow at the NIHR Nottingham BRC and the University of Nottingham, has been leading the PSP alongside a steering group of people who live with dementia and hearing conditions, and clinicians.
She said: “We are extremely pleased to have arrived at the definitive top 10 research areas for these important and prevalent conditions, which have recently been published in the Age and Ageing journal.
“The conclusion of this JLA priority setting partnership is a highly significant moment, especially for people living with co-existing hearing conditions and dementia and their families.
“Hearing loss impacts over 430 million people worldwide, whilst 55 million are estimated to be living with dementia. Many people live with both conditions at once. In addition, hearing loss in midlife has been associated with dementia risk.”
She added: “Now we have the definitive list of unanswered research questions from people with these conditions - and those involved in their care, treatment and support - we are in an excellent position to guide future research studies in the right direction, as well as influencing healthcare policy that can benefit these patients.”
Dr Nahid Ahmad, JLA advisor, said:
“Co-existing dementia and hearing conditions PSP was a fantastic exercise in consensus development, which reflected the team's dedication to ensuring the process was as inclusive as possible. The culmination of this, in the form of a Top 10 research priorities now paves the way for the voices of people with lived experience, their carers and supporters, and the professionals they work with, to be represented in future research, which can make meaningful improvements to the experiences of those affected by these conditions.”
Dr Hannah Semeraro, Head of Insight and Evidence, at RNID, said:
“It’s brilliant that these priorities have been shaped by the experiences of people affected, alongside researchers and clinicians, giving us real confidence they reflect what matters most. It’s vital that we build a stronger understanding of the links between hearing loss and dementia. RNID fully supports this work and the focus it will now bring to future research.”
The PSP, the fourth to be undertaken by the Nottingham BRC Hearing Theme relating to hearing conditions, followed the official JLA process between March 2023 and September 2024.
Participants included people living with dementia and/or hearing conditions, members of the Deaf community, supporters, and health and social care professionals.
An initial PSP survey gathered 1,250 suggested research questions from 404 participants. All out-of-scope and duplicate responses were removed, and the 422 remaining questions were grouped into categories.
After this, 47 summary research questions were developed and a review of up-to-date scientific literature confirmed that these questions were still unanswered.
In a second survey, 560 participants selected their top ten personal priorities from the 47 questions. In a final workshop in September, a panel of experts, including members of the public and clinicians, discussed the 16 highest-ranked questions from the second survey, and the process concluded with the identification of the final top 10 priority questions about dementia and hearing conditions.
If you have any questions about the PSP, please email Sian Calvert, the partnership coordinator, on sian.calvert@nottingham.ac.uk.
The top 10 priorities have also been translated into BSL – which can be seen via this link on YouTube: https://youtu.be/Ch1zkDLlYDw