Experts by experience

by
06 May 2016

After caring for her mother, Gillian Thomas joined the Alzheimer’s Society’s pioneering network of Research Volunteers

Experts by experience: volunteers visit a lab to monitor research projects

Experts by experience: volunteers visit a lab to monitor research projects

WHEN the neighbours of my 85-year-old mother phoned one Friday evening to say that she had flooded her bathroom, I knew the time had come for her to move in with us. Suffering from Alzheimer’s disease, she had managed for six years in her home after my father’s death. Now it was obvious that she needed full-time care.

So began my role as a carer, which continued for eight years until she died. At about the same time, the Alzheimer’s Society, to whom I had often turned for advice during my time caring, had set up a volunteer network of carers and ex-carers to help its research department to assess applications for grants.

Helping to put the needs of people with dementia and their carers at the heart of its research funding seemed to me a worthwhile way of giving something back to the Society. Sixteen years on, the Research Network now has about 275 volunteers like me: the majority are women aged between 40 and 65.

It has also led other funders, both charities and the Government, to include lay input — “experts by experience” — in their consideration of applications for funding in various fields of medicine. It is pioneering stuff, indeed.

Being a research volunteer has meant that I have built up my knowledge in all sorts of interesting scientific areas totally unrelated to my normal career as a travel journalist. Our core function is assessing the Society’s funding applications, using common sense, and our experience as carers. We mark each one on a scale of one to ten, judged by the likelihood of its leading to a better understanding of the disease, or having an impact on care, or both.

In every case, we look for potential weaknesses. For instance, when a proposal includes interviews with sufferers, researchers need to appreciate that the answers they get may be unreliable, if not positively misleading. My mother used to tell everyone she met that she was feeling fine, and was planning to go back to her own home, which was clearly not the case.

Also, you have to be wary of proposals that are planned to continue over a number of years, as dementia and its progression varies from person to person. When my mother first came to live with us, we could send her to the postbox just up the road — she enjoyed being helpful. But, one day, she arrived back with a neighbour who had found her wandering about, unable to remember where our house was; so we had to drop that idea.

 

AS A research volunteer, I get sent a batch of about eight proposals every couple of months. These fall into three broad categories: cause, cure, and care. Those that get the highest marks are then assessed by experts in that particular field. Finally, a panel, which also includes lay members, decides which of them will get funding.

Even though they are always explained in plain English, assessing those that involve complicated bio-medical science can be a challenge. We volunteers are, of course, the experts on proposals concerned with care, and these can range from care-home procedures to relieving the stresses of caring at home.

Caring for someone with dementia in one’s home is undoubtedly stressful, and some cope with it better than others. “Where am I? Where are you Gillian? I want to go home,” were the wearing words my mother muttered non-stop. One day, I found her chatting to herself in front of a mirror: “I don’t know who that lady is, but she keeps on talking to me,” she complained. As a family, we soon realised it helped if we saw the funny side of things.

On the bio-medical side, quite a few of the applications are related to a protein, amyloid. Discovering why it seems to cause a build-up of the damaging “plaques” and “tangles” that can be detected in the brain by an MRI scan is crucial to the development of drugs that might one day be able to treat or prevent them. A new research approach to treatment which also seems to have potential is the use of stem cells to replace damaged ones.

But, sadly, a cure is definitely not yet just round the corner. Indeed, for me, as a lay person, it came as a shock to realise that even very positive discoveries are likely to take at least 20 years to implement, and need huge amounts of money to progress from lab to pharmacy.

Grants for research projects cover both salaries and equipment, typically amounting to about £200,000-£350,000, spread over three years. It is pleasing to note that the amount allotted annually by the Society to research will have grown to £10 million by next year.

But, as anyone involved with dementia research will tell you, funding overall is still woefully short of what is needed to bring about a real breakthrough. Indeed, there are six times fewer scientists working in this area than in cancer research; so it is crucial to increase the number of researchers specialising in Alzheimer’s disease, and other related dementias, such as vascular.

With this in mind, the Society has allocated more than £3.2 million to help set up a dementia-leaders’ programme to encourage and enable young researchers to work in both the bio-medical and the care fields. As a result, eight new doctoral training centres have been established at universities across the UK, where 52 post-graduate students are being funded to work with leading academics and clinicians on different aspects of dementia.

Some will study the genes that increase the risk of getting the disease; others how lifestyles might affect your chances of developing it. (Choosing who should get these grants, from the many applicants, involved a great deal of extra marking for us RNVs last year.)

Once they have been awarded funding, researchers are allocated three “monitors” — something else that we can volunteer to do. This involves keeping an eye on the progress of the researchers’ project, and generally encouraging them. We visit their labs to discuss any problems, and, importantly, remind them to think about how they will eventually disseminate and promote their results.

 

MY FIRST monitoring assignment was at the Institute of Psychiatry in London, which carries out a great deal of pioneering research in the dementia field. Dr Amrit Mudher, who was studying the part played by a substance in the brain, tau, explained to me that the brains of fruit flies have similar characteristics to human ones. So they are particularly suitable for studying dementia, especially as they breed prolifically, with only a ten-day life cycle, and are so tiny that the workings of their brain can be studied while they are still alive.

I could scarcely believe my eyes when she showed me, on a screen, the brain of one tagged with a florescent marker as it crawled around under a microscope. It has certainly changed my attitude towards those tiny creatures that inhabit my compost bins in summer, from one of annoyance to respect.

Understandably, young researchers can be nervous about the prospect of being descended on by RNVs for an inspection. But I think that most of them appreciate our visits. As Dr Mudher put it: “I found it inspiring to learn at first-hand how vital my work was, as they helped me understand what caring for a person with dementia involves. Professionally, I realised, too, the value of having to explain my work to non-scientists. This is an increasingly important skill for all researchers.”

Another surprise for me, as a lay person, was to learn that, even when the results of research are positive — particularly those concerned with dementia care — it does not mean that they will immediately be put into practice. So it is always important that researchers are reminded to disseminate their findings, not just for the sake of their own careers but for people suffering from the disease.

 

ALTHOUGH volunteering at the Alzheimer’s Society remains my main focus, it has also led on to other projects. I helped to set up an online scheme, “Join Dementia Research”, which matches researchers with carers and dementia sufferers who would like to get involved with research. I have also recorded several video interviews for them with clinicians, which answer, in non-medical terms, the most frequently asked questions about dementia.

At the Alzheimer’s Society’s annual research conference, volunteers, scientists, doctors, and budding researchers all get together to hear about Society-funded projects and future developments. It is also an opportunity for professionals, carers, and people suffering from dementia to mingle and exchange ideas in seminars, as well as at mealtimes, making it an informative and sociable occasion.

The National Clinical Director for Dementia, Professor Alastair Burns, says: “Setting up the Research Network was a major step forward in dementia research. For the first time, meaningful and sustained involvement of people with dementia, and their carers, started to guide research, ensuring that it is of direct relevance and help to people with dementia and their carers”.

 

Dementia Awareness week is 15-21 May. For more information about volunteering, visit www.joindementiaresearch.nihr.ac.uk.

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