People living with dementia and hearing conditions, their families, and their clinicians are being encouraged to make their views known through a new national UK 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, was launched on World Hearing Day, 3 March 2023, by the National Institute for Health and Care Research (NIHR) Nottingham Biomedical Research Centre (BRC) and the University of Nottingham.
The PSP aims to 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.
Dr Eithne Heffernan, Senior Research Fellow at the Nottingham BRC and the University of Nottingham, is leading the PSP alongside a steering group of people who live with dementia and hearing conditions, and clinicians.
"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”, said Dr Heffernan.
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 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 PSP will entail reviews of published evidence as well as surveys and a workshop with people affected by dementia and hearing conditions and clinicians.
Read the full news release, here: https://nottinghambrc.nihr.ac.uk/about-nottingham-brc/news/3928-people-living-with-dementia-and-hearing-conditions-invited-to-shape-future-research