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28 February 2023
Embargo: 00.01 Friday, March 3rd, 2023
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.
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.”
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 sian.calvert@nottingham.ac.uk. Follow the latest PSP updates on Twitter at @DementiaHearPSP, @NottmBRC and @hearingnihr
For more information, images, or interview and filming opportunities, contact Andrew Bennett, email: richard.bennett@nuh.nhs.uk at Nottingham University Hospitals NHS Trust. Mobile +44 07812 275573.
About the NIHR Nottingham Biomedical Research Centre
The NIHR Nottingham Biomedical Research Centre is translating research into breakthrough
treatments, new technologies and advanced medicines for common illnesses like asthma
and arthritis.
Our research is led by internationally renowned clinicians, scientists and academics working
together to improve the health of our patients and our communities.
Our expertise in respiratory medicine and MRI is at the forefront of COVID-19 research for
effective treatments and vaccines, as well as contributing to the world’s understanding of
Coronavirus.
The NIHR Nottingham Biomedical Research Centre is funded by the National Institute for
Health and Care Research and is a partnership between Nottingham University Hospitals
NHS Trust (NUH) and the University of Nottingham, working with Nottinghamshire
Healthcare NHS Foundation Trust and NHS and academic partners across the East
Midlands. It is based at NUH.
About the NIHR
The mission of the National Institute for Health and Care Research (NIHR) is to improve the
health and wealth of the nation through research. We do this by:
· Funding high quality, timely research that benefits the NHS, public health and social
care;
· Investing in world-class expertise, facilities and a skilled delivery workforce to
translate discoveries into improved treatments and services;
· Partnering with patients, service users, carers and communities, improving the
relevance, quality and impact of our research;
· Attracting, training and supporting the best researchers to tackle complex health and
social care challenges;
· Collaborating with other public funders, charities and industry to help shape a
cohesive and globally competitive research system;
· Funding applied global health research and training to meet the needs of the poorest
people in low and middle income countries.
NIHR is funded by the Department of Health and Social Care. Its work in low and middle
income countries is principally funded through UK Aid from the UK government.
Website: https://www.nihr.ac.uk/
About the University of Nottingham
Ranked 18th in the UK by the QS World University Rankings 2023, the University of Nottingham is a founding member of Russell Group of research-intensive universities. Studying at the University of Nottingham is a life-changing experience, and we pride ourselves on unlocking the potential of our students. We have a pioneering spirit, expressed in the vision of our founder Sir Jesse Boot, which has seen us lead the way in establishing campuses in China and Malaysia – part of a globally connected network of education, research and industrial engagement.
The University is among the best universities in the UK for the strength of our research, positioned seventh for research power in the UK according to REF 2021. The birthplace of discoveries such as MRI and ibuprofen, our innovations transform lives and tackle global problems such as sustainable food supplies, ending modern slavery, developing greener transport, and reducing reliance on fossil fuels.
The University is a major employer and industry partner – locally and globally – and our graduates are the second most targeted by the UK’s top employers, according to The Graduate Market in 2022 report by High Fliers Research. We lead the Universities for Nottingham initiative, in partnership with Nottingham Trent University, a pioneering collaboration between the city’s two world-class institutions to improve levels of prosperity, opportunity, sustainability, health and wellbeing for residents in the city and region we are proud to call home.
Hearing Sciences at the University of Nottingham School of Medicine is a flourishing UK centre of auditory research. Its mission is to deliver research-led innovations that can lead to improvements in daily living for people who have hearing-related problems.
About the James Lind Alliance
The James Lind Alliance (JLA) is a non-profit making initiative bringing patients, carers and clinicians together in JLA Priority Setting Partnerships (PSPs). JLA PSPs identify and prioritise unanswered questions or evidence uncertainties that they agree are the most important, so that health research funders and researchers are aware of the issues that matter most to the people who need to use the research in their everyday lives. Over 135 PSPs have been completed, in the UK and internationally. The JLA is hosted by the National Institute for Health and Care Research (NIHR).
For more information, please see https://www.jla.nihr.ac.uk/
About Alzheimer’s Research UK
- Alzheimer’s Research UK is the UK’s leading charity specialising in finding preventions, treatments and a cure for dementia.
- For our latest updates follow us on Twitter @AlzResearchUK
- Our animation “What is dementia?” explains the essentials of dementia and the diseases that cause it https://youtu.be/HobxLbPhrMc
- Our incredible supporters make our work possible through donations and fundraising, with 1 in 3 of our research projects funded by gifts in Wills. To learn how you can help fund vital dementia research, visit www.alzheimersresearchuk.org or call 0300 111 5555.
- We are currently supporting pioneering dementia research projects worth nearly £34 million in leading Universities across the UK.
- How can we challenge perceptions of dementia using only an orange? Find out more at www.alzheimersresearchuk.org/orange and help us share a better understanding about dementia. #ShareTheOrange
About RNID
• RNID is the national charity supporting people who are deaf, have hearing loss or tinnitus.
• Currently, one in five adults in the UK have a form of hearing loss. One in eight people have tinnitus.
• RNID was founded in 1911. For more than 100 years the charity has pioneered new treatments for hearing loss and tinnitus. It has promoted access to sign language and subtitles, brought in free hearing tests for new-born babies, worked with technology for cochlear implants and developed techniques to help people cope with tinnitus.
• If you (or someone close to you) are deaf, have hearing loss or tinnitus and need free confidential and impartial information and support, contact RNID. We are open 8:30am to 5.00pm, Monday to Friday. Find out how to contact RNID at rnid.org.uk/contact
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Click the image to see my post "All's Fair In Love And DisAbility" reprinted in a disability newsletter.
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