Keeping memory loss research in mind
The prospect of losing our memory is frightening. It’s no less devastating to witness a loved one’s memory decline. But despite the increased prevalence of dementia in the UK, only a small percentage of NHS patients with memory conditions take part in any form of clinical research. Here Helen Rice, memory nurse specialist at Charing Cross Hospital, explains how research is vital to help us identify new treatments and how to get involved in relevant research at the Trust.
The Imperial Memory Unit is a dedicated research facility within the Trust where we aim to get to grips with the causes of memory loss and conditions like Alzheimer’s disease.
Through a combination of observational studies and clinical trials, we develop new treatments to tackle these conditions – slowing down their degenerative effects and alleviating symptoms.
At the moment we are trialling new medications for sufferers of mild cognitive impairment (MCI) and Alzheimer’s disease. They act on a protein in the brain called amyloid that we know builds up in certain memory conditions. By removing or preventing this build-up of protein, we hope to slow the progression of memory conditions, and to do so in a more effective way than the treatment that’s currently available to patients.
Finding out about research trials
Most of the participants in our memory research trials find out about us from the neurology clinics at Charing Cross Hospital where we’re based, but this is slowly changing.Increasingly people look at the trials we are running on our website and refer themselves, or it’s GPs and other healthcare professionals who refer patients to us.
I think healthcare professionals and the general public recognise much more needs to be done to tackle memory conditions. Initiatives like Join Dementia Research, where you can register your interest in taking part in a research trial, and the Prime Minister’s challenge on dementia – setting out how the UK will be the best place in the world to undertake dementia research by 2020 – are really helping to raise awareness.
Why take part?
Of course, taking part in memory research isn’t for everyone. We have eligibility criteria for every trial we run that looks at each individual’s physical health, which medication they are taking, and if they are suitable to take part. When someone is accepted onto a trial they normally visit us once a month, or once every few months, for things like a blood test, scan or to complete some questionnaires. Sometimes this can be off-putting – especially for people who feel frightened of the hospital environment.
But many people are still very motivated to participate and feel there are huge benefits to taking part in research. Hope is perhaps the most powerful incentive; the hope that a new drug or treatment in development will slow down memory decline in themselves or their loved ones, or that it will help other families in the future.
Feeling like you are doing something, taking action, contributing to the greater good – we’re often told this feeling is the positive by-product of joining a study or trial. It allows patients with memory problems to take back a bit of control and ownership over their condition. Being supported through living with a memory condition by a team that understands the challenges, difficulties and triumphs is also a very valuable part of what we offer to our participants. There’s also the sense of empathy that comes with meeting other families facing the same challenges.
There can be negative preconceptions about research and clinical trials, sometimes fuelled by horror stories in the media, or a lack of understanding around safety or how trials come into being. But one thing is for sure, the only way we can beat Alzheimer’s disease and other dementias, and improve the quality of life for sufferers of these conditions and their families, is to develop new treatments. To do this, we need research teams like ours and willing research participants.
If you or your relative is suffering from a memory condition and would like to find out more about the research studies and trials we are recruiting to, please contact: 020 3311 5228 / 020 3313 5515 or send an email to MEMORY.RESEARCH@IMPERIAL.NHS.UK.
Find out more about the Imperial Memory Unit