Prof Tom Dening: Dementia research – it’s not all drug trials

wam logo final blogWhen people consider dementia research, they often think of trials of drugs to treat or slow the disease. However, understanding and combating the many and varied negative effects of dementia requires more than just drug trials. In my research at the Centre for Dementia at the University of Nottingham’s Institute of Mental Health, we’re looking at an important topic within dementia care where no drug is likely to be available: hearing loss in care home residents.

Dementia is common: there are about three-quarters of a million people with dementia in the UK. Hearing loss is common too: almost half of people in their 70s have some degree of hearing loss, and this rises to 80% in people aged over 80. The two conditions often occur together, especially among residents of care homes, where around 75% of residents have dementia and at least that proportion have hearing loss. Probably about 300,000 care home residents have both.

This convergence of dementia and hearing loss in care home residents matters for several reasons:

  • care homes are noisy environments
  • care staff may lack knowledge and skills to support hearing aids and to communicate effectively
  • the presence of other conditions, such as dementia, can affect staff attitudes and approach to hearing loss
  • care staff may not have English as their first language
  • hearing aids may be supplied but are often not used, get mislaid or broken, or batteries go flat
  • losing expensive hearing aids can upset families and residents
  • the resident may not be able to use or may not tolerate hearing aids, or even understand their purpose.

Clearly, dementia and hearing loss are big problems among residents in care homes. Indeed, if you mention ‘hearing aids’ and ‘care homes’ in the same sentence, most people just shake their heads or grin wryly, because this is recognised as a difficult area of care home work.

At the moment, there is no obvious intervention to use in a clinical trial in this area. It is not just a matter of giving everyone a hearing aid, because there is no good evidence that this improves outcomes for residents with dementia. Also, because there are very few, if any controlled trials of any intervention to improve hearing or communication in care homes, there is little point in attempting a conventional systematic review.

I had been interested in this clinical area for many years, having visited hundreds of people with dementia in care homes and finding that so many of them had hearing loss. When I came across realist methodology, I thought that this looked like a promising approach. Realist synthesis (or in this case, realist review) is a method that uses multiple sources of data to examine questions of what works for whom, when, and under what circumstances. Data can be obtained from the published literature, including the so-called grey literature as well as journal publications, but also from people who are expert in the area either from personal or professional experience (context experts).

Our team has received a funding award from the NIHR Research for Patient Benefit programme to run a realist evaluation called ORCHARD: Optimising hearing-Related Communication in care Home Residents with Dementia. We have been gratified that everybody whose help we have sought has been enthusiastic and interested to know what we will find out. However, of all the things that make this a strong proposal, I think the most important is that the research has arisen from everyday clinical practice.

Professor Tom Dening (third right) and the ORCHARD team

Our approach is very different to a drug trial for dementia – there will be no drugs, but instead we’ll look at what approaches, aids and adaptations work best for people in care homes with dementia and hearing loss. We won’t be generating data by testing a drug or intervention on participants either, but rather synthesising and evaluating existing data from many sources.

Our evaluation will identify best practice and research priorities, including which interventions to use and how to measure them. In this way, we hope our research will have as big an impact for people with dementia as any drug trial.

Note: This content was first published here on the National Institute for Health Research (NIHR) blog and has been redistributed with permission.

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Professor Tom Dening is Professor of Dementia Research and head of the Centre for Dementia in the Institute of Mental Health at the University of Nottingham School of Medicine. He is LCRN dementia speciality lead for East Midlands.

NIHR is running a campaign to mark World Alzheimer’s Month. Find out more on the NIHR website.

 

 

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