People living with dementia and hearing conditions, their families, and their clinicians are being encouraged to make their views known through a new national research prioritisation programme that could drive future research.
The new programme, called a James Lind Alliance Priority Setting Partnership (PSP) for co-existing dementia and hearing conditions, will be launched on World Hearing Day (3rd March 2023) by the National Institute for Health and Care Research (NIHR) Nottingham Biomedical Research Centre (BRC) and the University of Nottingham.
The PSP will identify the top priorities for research about the prevention, diagnosis, and treatment of dementia and hearing conditions, such as hearing loss, tinnitus and hyperacusis, by consulting people affected by these conditions and their clinicians. The PSP outcomes will impact research funding, commissioning, and policy in the future, to benefit people living with these conditions.
With hearing loss affecting one in five of the UK population, including many people living with dementia, and with the prevalence of both dementia and hearing loss increasing, researchers are keen to understand the concerns of people living with these conditions along with those who provide care. The programme is being carried out in partnership with the James Lind Alliance, Alzheimer's Research UK (ARUK) and the RNID, the charity supporting people who are deaf, have hearing loss, and tinnitus.
We can make future research into dementia and hearing loss more relevant, beneficial, and impactful for people in the UK and abroad.
Dr Eithne Heffernan, Senior Research Fellow at the Nottingham BRC and the University of Nottingham, is leading the Priority Setting Partnership alongside a steering group of people who live with dementia and hearing conditions, and clinicians.
She said: "By ensuring that people living with these life-changing conditions have a voice - along with their families and clinicians - we can make future research into dementia and hearing loss more relevant, beneficial, and impactful for people in the UK and abroad."
People living with dementia can experience severe difficulties, including communication problems, diminishing independence and social isolation. Having hearing conditions in addition can significantly exacerbate these difficulties. It also means that accessing suitable diagnostic assessments and treatment options becomes even more challenging. Furthermore, a commission by The Lancet has highlighted hearing loss as being one of the main risk factors for developing dementia.
Dr Heffernan added:
"Through the PSP, people affected by these co-existing conditions will have a strong say in which research programmes are carried out about hearing conditions and dementia in the future. This will avoid research studies being conducted, or treatments being developed, that don't address the real problems patients face in everyday life."
The Nottingham BRC team and its partners will make sure that the outputs of the process are brought to the attention of research funders, research commissioners and policy makers so patients can access the best, most appropriate care in future.
Hearing experts at Nottingham BRC have previously led three James Lind Alliance PSPs into Ear, Nose and Throat Conditions, on the prevention, diagnosis and management of mild to moderate hearing loss, tinnitus and hyperacusis. The BRC and its partners have more than a decade's experience in helping shape research programmes through patients' voices.
Nahid Ahmad, James Lind Alliance adviser, who is chairing the PSP, said:
"I'm delighted to be supporting this PSP in using the JLA method to identify and prioritise the research needs of people who live with coexisting dementia and hearing conditions, their families and carers, and the clinicians who work with them. It is an interesting approach for the JLA to consider these two conditions together. The Partnership will be consulting widely and working hard to involve communities that are often underrepresented in research. The Top 10 priorities will be an important call to action for researchers and funders, making them aware of the issues that matter most to people who need to use the research in their everyday lives."
This partnership gives us a great opportunity to determine the gaps in the current evidence in hearing loss and dementia, and identify top priorities for future research across the UK.
Dr Susan Mitchell, Head of Policy for early detection and diagnosis at Alzheimer's Research UK, said:
"Alzheimer's Research UK is looking forward to being part of the Priority Setting Partnership for dementia and hearing conditions. Despite growing evidence suggesting a relationship between hearing loss and the increased risk of dementia, there is still so much we don't understand – what are the key mechanisms behind the relationship between the two conditions? What are the suitable interventions to reduce the risk of developing dementia?
"This partnership gives us a great opportunity to determine the gaps in the current evidence in hearing loss and dementia, and identify top priorities for future research across the UK. This will also help us shape our future research funding and policy work so it benefits people living with hearing loss and dementia."
Ralph Holme, Director of Research and Insight at RNID, said:
"We are pleased to be involved in this Priority Setting Partnership, driving forward research in this important area that could make a huge difference to millions of people.
"We know that hearing loss and dementia can often occur together and have an impact on each other, and there is still a lack of understanding about the prevention, diagnosis and treatment options for people who are living with both conditions. As well as being involved in this PSP, we are co-funding three other important research projects to investigate the links between hearing loss and dementia more closely and help find the answers that so many people are looking for."
- The PSP will launch on World Hearing Day (3rd March 2023). It will entail reviews of published evidence as well as surveys and a workshop with people affected by dementia and hearing conditions and clinicians. You can contact the partnership by emailing the coordinator at [email protected]. Follow the latest PSP updates on Twitter at @DementiaHearPSP, @NottmBRC and @hearingnihr
