COVID-19 has dealt a huge blow to research in many areas, including dementia, with many laboratories and research centres having to close their doors for months in order to stop the spread of the virus.
Some facilities have reopened, with extra infection control measures in place, and are calling for members of the public to volunteer to take part in studies.
There were smiles on the faces of researchers as they spoke at the webinar, describing the studies they are now running across Bristol and Bath. For anyone with experience of dementia, either as a person with dementia or as a healthy volunteer, there are opportunities to get involved in research.
The CUBOId study, for example, involves installing home sensor technology into people's homes to monitor for changes in behaviour over time. The project, led by Dr James Selwood at the University of Bristol, aims to test whether the sensors can help with diagnosis of dementia in people with mild cognitive impairment, by detecting changes in people's daily routines. This research is needed because dementia in its earliest stages can be tricky to diagnose, because current diagnostic tests, such as brain scans and memory tests, are not always sensitive enough to detect the earliest changes in someone's brain function. Anxiety and lack of sleep, for example, can affect someone's score on a memory test.
(Image above: Silhouette images captured by the SPHERE system, showing a resident cooking in a house fitted with SPHERE technology)
“It can be very difficult to translate how someone performs on these memory tests to their everyday function at home or at work. So there’s a real need to see if there are other ways in which we can get better at diagnosing dementia earlier on,” said Selwood. The devices include a movement sensor on a wrist-band, and a wall-mounted sensor that detects changes in temperature and humidity, to show when someone is cooking or running a bath, for example, and how often, and whether they do this repeatedly or at strange times.
Selwood would like to hear from volunteers over the age of 50 with a diagnosis of Mild Cognitive Impairment or Alzheimer’s disease, in the Bristol region (firstname.lastname@example.org or telephone 0117 414 8238).
Meanwhile at the Research Institute for the Care of Older People (RICE) at the Royal United Hospital, Bath, researchers have at least two trials that need volunteers with either MCI or early stage dementia. One is the Julius Clinical study is testing a new medication that is hoped can halt the disease and stop dementia from getting worse.
Another RICE study is looking at whether a programme of exercises and other fun activities can help people to remain healthier and living more independently for longer. A key aspect of the study, known as PrAISED (Promoting Activity, Independence and Stability in Early Dementia and Mild Cognitive Impairment), is that volunteers have intensive support to help them keep going with the activities.
“It’s been a really popular study and people have found it very enjoyable and really interesting,” said Dr Tomas Walsh of RICE. “It’s been great for the people involved particularly at the moment where people have not been able to get out and about as much as they would have – this intervention has been really helpful for people who might be by themselves.”
Anyone interested in being a research volunteer at RICE can contact Vanessa Bishop by calling 01225 476420. There are strict criteria for who is eligible to take part in a trial, but there is also the option of joining an advisory group to give feedback to researchers on their ideas.
“We are always delighted if people are keen to take part in research and we do encourage people to be open-minded about the sorts of research that they might be able to take part in. I think of myself as being like a personal shopper where the patient is the client – I get their specifications and have to match them up,” Vanessa said.
A very different kind of study led by the University of the West of England (UWE) trying to improve access to local dementia services for people from South Asian communities. This is important because people of South Asian origins are at greater risk of dementia owing to risk factors such as diabetes and heart disease, and yet often do not get diagnosed until they are at a later stage, and miss out on support services.
Professor Rik Cheston, who leads dementia studies at UWE, is seeking to interview people with experience of working in South Asian communities, including nurses, who can advise on building better links between small community organisations and the NHS. “Small organisations can feel swamped by larger more bureaucratic organisations. We have to have a collaborative system and an understanding of the problems and how to overcome some of these. We want to tap know what works locally,” says Cheston. The project will also produce an online toolkit of culturally appropriate assessments and interventions for people with dementia, including information packs translated into different languages.
To find out more, email Richard.email@example.com.
People with experience of dementia can also get involved in advisory groups to give researchers feedback on their ideas, by joining the Dementia Health Integration Team (HIT) Patient and Public Involvement (PPI) panel or by emailing firstname.lastname@example.org to be put in touch with the relevant researchers.
To keep updated on dementia research in the Bristol and Bath region sign up to the Dementia HIT Research Newsletter.