Last year, RNID was proud to be part of the steering group for the James Lind Alliance Priority Setting Partnership.
The partnership was focused on deciding the future direction of hearing loss and dementia research, and we ensured our communities had their say. These are the results of their research survey.
Who are the James Lind Alliance?
The James Lind Alliance (JLA) is an initiative that brings patients, carers and clinicians together in a Priority Setting Partnership (PSPs). They identify and prioritise unanswered questions that they agree are the most important, so that researchers and funders are aware of the issues that matter most to the people who need to use the research in their everyday lives.
The National Institute for Health and Care Research at the Nottingham Biomedical Research Centre (BRC) and the University of Nottingham invited Alzheimer’s Research UK and the Royal National Institute for Deaf People (RNID) to help run the priority setting project.
Supporting this research
From 2023 to 2025, the James Lind Alliance ran a priority-setting process for hearing loss, deafness, and dementia research. The priority setting method uniquely brings together people with lived experience, carers, clinicians and researchers to identify research priorities, aiming to drive impactful studies that can improve the risk reduction, diagnosis, and management of these conditions.
As part of this process, RNID helped ensure full accessibility for all participants, including BSL users. We shared surveys through our digital channels and research panel, making sure that people could easily contribute their perspectives.
What were the results?
Participants were asked which research questions around hearing and dementia they would like hearing researchers to focus on. Their top ten chosen questions are below.
- What actions can people who have hearing loss take to reduce their risk of developing dementia?
- Can the early detection and management of cognitive or hearing difficulties for people lead to better outcomes or treatments?
- Does hearing loss increase dementia risk, and if so, what are the underlying mechanisms or causes (e.g. vascular disease, biological or neurological mechanisms)?
- What training would help health professionals provide appropriate support and communicate effectively with people living with both dementia and hearing conditions?
- Is the link between hearing loss and dementia risk impacted by other factors (e.g. personality, lifestyle, additional health conditions, or social isolation)?
- Does dementia impact hearing, or does hearing impact dementia (e.g. severity, rate of progression)?
- Can auditory and cognitive training be used by people with hearing loss to improve cognition and/or reduce the risk of developing dementia?
- Should routine health checks in adults assess both hearing and cognition?
- Are there hereditary/genetic factors that increase the likelihood of developing co-existing dementia and hearing conditions?
- What is the best way for primary care professionals (e.g. general practitioners) to support the assessment of dementia and hearing conditions and to improve their understanding of the link between them?
You can read more about the results on the James Lind Alliance Priority Setting Partnership website, or find out more about the research in detail here.
How was the research conducted?
An initial PSP survey received 1,250 suggested research questions to prioritise from over 400 participants. After removing duplicate and out-of-scope responses, 422 remaining questions were grouped into categories. Up-to-date scientific literature was reviewed to confirm that these questions were still unanswered, and 47 summary research questions were developed.
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 agreed the top 10 priority questions about dementia and hearing conditions.
RNID in the steering group
The steering group meetings were brilliantly led by the organisers, and, through our attendance, we were able to make sure the project was focused on issues that mattered most to our communities, helping to amplify their voices. It was also fantastic to see people with lived experience at the forefront of the steering group sessions, which were run in a highly accessible way by the University of Nottingham.
As well as sharing the survey with our communities, RNID participated in the survey itself to give our views on key issues. We highlighted key issues that we think require further evidence and research as we continue to influence the government and the NHS in this area.
What happens next?
Moving forward, RNID will help disseminate the findings, ensuring the resulting research priorities shape the future direction of work in these crucial areas. The priority questions will be used to help guide decisions about which research projects should be developed and funded, ensuring that future research on these topics is meaningful to the people it will impact.
Dr Eithne Heffernan, PSP Lead and Senior Research Fellow at the NIHR Nottingham BRC and the University of Nottingham, said:
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. 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.”
Hannah Semararo, RNID’s Head of Insight & Evidence, said:
RNID is delighted to see this important work progressing and to have been a part of the Priority Setting Partnership. It’s critical that we deepen our understanding of the links between these two conditions, as the more we learn, the better we can improve the lives of people who are deaf or have hearing loss.
We are especially pleased that this project has put the voices of our communities at the centre, ensuring their insights shape future research priorities. As further research builds a stronger evidence base, it will help drive meaningful changes in healthcare and support services for people affected by both hearing loss and dementia.”
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.”
