A new project aims to find out what are the top questions that need answering about dementia and hearing conditions, in the first Priority Setting Partnership (PSP) to look at two health areas together. Sarah Chapman looks at what this is about, and hears from some of those involved in the PSP about what it hopes to achieve and why it’s important.
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UPDATE! The first survey opened on 13 November 2023 and will stay open for 3 months. Have your say about the connection between hearing and dementia to guide future research.
Take-home points
I watched the impact on my mum of hearing loss in her 50s, enough to push her into early retirement. Alongside increasing deafness over the following years, Mum then developed Alzheimer’s. For the last fifteen years of her life, deafness and dementia combined robbed Mum of so much, the two conditions together magnifying the havoc they could cause alone. I worried that this would be my future too. Before a cochlear implant vastly improved my hearing, it was in the forefront of my mind at every visit to the audiology department, where a poster reminded me that hearing loss is a risk factorAn aspect of a person's condition, lifestyle or environment that affects the chance of them getting a disease. For example, cigarette smoking is a risk factor for lung cancer. for developing dementia, though it’s important to note that it’s a modifiable one, with hearing aids appearing to reduce the excess riskA way of expressing the chance of an event taking place, expressed as the number of events divided by the total number of observations or people. It can be stated as ‘the chance of falling were one in four’ (1/4 = 25%). This measure is good no matter the incidence of events i.e. common or infrequent..
Many people, like Mum, are living with both hearing conditions (such as hearing loss, hyperacusis and tinnitus) and dementia and the number is increasing as our populationThe group of people being studied. Populations may be defined by any characteristics e.g. where they live, age group, certain diseases. ages. It’s timely, then, that a new James Lind Alliance Priority Setting Partnership (PSP) has just been launched to shape future research for people with coexisting dementia and hearing conditions.
The first PSP to look at the shared priorities of two health areas, it is being carried out by the NIHR Nottingham Biomedical Research Centre (BRC) and the University of Nottingham, Alzheimer’s Research UK (ARUK) and the Royal National Institute for Deaf People (RNID). People living with these conditions and those who provide care, as friends and family or as health professionals, will work with researchers to find the top priorities for research – the unanswered questions that matter most to them and others like them.
As always with Priority Setting Partnerships, there is a steering group made up of those living with these conditions and people involved in care, supported by a team of researchers and a JLA advisor. There will also be opportunities for the public to share their views in surveys and at a workshop.
Why it’s so important to identify the top priorities for research into dementia and hearing conditions
Lead researcher Dr Eithne Heffernan explains:
“Through the PSP, people affected by these co-existing conditions will have a very 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 steering group includes representatives with lived experience of dementia and/or hearing loss (e.g., patients, carers). Here, some share their thoughts on the importance of the PSP:
Jean (living with hearing loss):
“I may well be in Sarah’s mother’s shoes one day. As someone of a certain age with hearing loss who uses hearing aids, I don’t know if dementia is also lying in wait for me. I want to know if I’m doing enough by wearing hearing aids. If I develop dementia, will family and professionals still realise I need to hear? Should I be afraid that dementia is more likely because I have hearing loss? These are some of the questions that preoccupy me constantly, and are the reason I am so keen on this research. People like me, with our fears and questions, need to speak out so that research can factor in what we value.”
Peter (living with dementia and hearing loss):
“The partnership is important because it will bring together professionals and people living with dementia. It could also help inform people living with dementia about the support that they did not know was available”.
Elaine (cares for a person with dementia and hearing loss):
“People with dementia already struggle to engage with the outside world. Hearing loss can make life even more difficult and sadly they may withdraw into themselves if they don’t receive the support they need to access audiology. I hope this work identifies and helps to remove some of the barriers people living with dementia face when trying to access audiology.
We might think we know what is best for others. The challenges facing those living with dementia are many and varied. They are best placed to share their experiences and to identify solutions that are practical and would make a real and positive difference to their lives”
Can you help?
A key part of the priority-setting process is seeking the views of members of the public about what matters most to them in the health areas being explored and getting their help in ranking questions in order of importance. If you or someone you know might like to take part, or to find out more and follow the progress of the project, you can go to the PSP webpage, follow on Twitter @DementiaHearPSP, or email the PSP Co-ordinator Dr Sian Calvert sian.calvert@nottingham.ac.uk
UPDATE! The first survey opened on 13 November 2023 and will stay open for 3 months. Have your say about the connection between hearing and dementia to guide future research. You can also read more in the press release.
Find out more about dementia and/or hearing loss
- Alzheimer’s Research UK (ARUK)
- Royal National Institute for Deaf People (RNID)
- Dementia and hearing loss: A narrative review
- Dementia: evidence, experience and resources – our blogs about different aspects of preventing and living with dementia. Many of them include research evidence and also reflections from people affected by dementia themselves or in supportive roles as carers, family members or health professionals. There are also links to helpful resources.
- Dementia prevention, interventionA treatment, procedure or programme of health care that has the potential to change the course of events of a healthcare condition. Examples include a drug, surgery, exercise or counselling. , and care: 2020 report of the Lancet Commission and see also the blog Behind the headlines: can one in three dementia cases be prevented?
- Evidently Cochrane blogs on hearing conditions
- On this page Hearing conditions: evidence, experience and resources (March 2023) we share trustworthy evidence and resources about hearing conditions and highlight opportunities to take part in research.
Join in the conversation on Twitter with @DementiaHearPSP @CochraneUK @SarahChapman30 or leave a comment on the blog.
Please note, we cannot give specific medical advice and do not publish comments that link to individual pages requesting donations or to commercial sites, or appear to endorse commercial products. We welcome diverse views and encourage discussion but we ask that comments are respectful and reserve the right to not publish any we consider offensive. Cochrane UK does not fact-check – or endorse – readers’ comments, including any treatments mentioned.
Sarah Chapman has nothing to disclose.
