Celebrating the impact of dementia research volunteers
By Jess Tobin | Wednesday 24 February 2021
Over the last year, the pandemic has had both a positive and negative impact on the world of biomedical research. We have witnessed the huge obstacles researchers have had to overcome in finding COVID-19 vaccines in such a short period of time. This highlights the true potential of scientific research when both expertise and public volunteers are invested in solving an urgent challenge.
Although dementia research has been impacted over the last year, the success of the COVID-19 vaccines gives us hope for the future. On the 6th birthday of Join Dementia Research, (a national platform used to match volunteers to suitable dementia research studies), we celebrate the vital role volunteers have continued to play over the last year and look forward to what we can expect from the future.
Despite delays in recruitment to face-to-face dementia research studies, volunteer enrolment onto studies hosted by Join Dementia Research is at an all-time high since the service launched in 2015.
Many new studies relating to COVID-19 and dementia are successfully recruiting through the service. People living with dementia have been badly affected by the pandemic, and so their experiences and those of their loved ones are important to shine a light on the difficulties faced. These studies are investigating the impact of isolation, loneliness, and difficulty in receiving medical treatment.
Researchers are also looking into the long-term impact that the pandemic has had on dementia diagnosis services. People worried about symptoms have faced referral delays and diagnosis waiting times have increased. Some services have adapted to offering virtual appointments, which may not be suitable for some people living with memory problems. Volunteers taking part in these studies are helping to shape future policies, services and training around dementia diagnosis, care and support.
Important online research studies have continued to recruit and collect data over the last year. Many of these ask volunteers to take part in online questionnaires or game-like activities, designed to measure thinking and concentration.
Studies like Predict-PD collect information about volunteers over a long period of time. Researchers are then able to look for slight changes in performance, in the hopes of identifying factors that indicate neurological decline and may steer early diagnosis in the future. Volunteers can also take part in online studies which analyse spatial recognition and reaction time from the comfort of their homes. This enables researchers to investigate how these are affected in people with dementia, and what impact this might have on someone’s ability to drive. These online studies also provide opportunities for carers to share their valuable insight and experiences. Such online studies often rely on lots of volunteers to take part and Join Dementia Research allows researchers to recruit hundreds of people to their online studies very quickly, speeding up the collection of vital data.
Clinical trials investigating potential disease-modifying treatments for Alzheimer’s disease have made significant strides over the last couple of years. Aducanumab, which showed promising results in clinical trials, and is now being assessed by regulators, recruited volunteers for its trials through Join Dementia Research. There are also other late-stage clinical trials recruiting through the service at the moment. These include the CLARITY study for the drug Lecanemab and the DESPIAD study for the drug miridesap. Both of these drugs are being investigated for their ability to clear away amyloid plaques, one of the proteins involved in the development of Alzheimer’s disease. They are both looking for volunteers with a diagnosis of early stage Alzheimer’s or Mild Cognitive Impairment. Clinical trials like these show the massive impact a research volunteer can have by taking part, potentially paving the way for the first ever disease modifying treatment for Alzheimer’s.
Getting a diagnosis for dementia can be a very lengthy process, which often involves memory tests, brain scans and sometimes a lumbar puncture. We know that physical changes can start in the brain up to two decades before the dementia symptoms appear. Although there are promising drugs in the pipeline for Alzheimer’s disease, without earlier detection of these brain changes these drugs are likely to be much less effective – so studies that seek to improve early detection are vital.
Researchers at University College London recently found that they were able to predict levels of the protein amyloid in the brain through a blood test in a group of research participants. There are also several new studies looking at online/virtual ways to detect these changes in the brain earlier on. The IGNITE study also run by researchers at University College London are using an app which can be downloaded on an iPad. They hope this study will aid in the early detection of genetic frontotemporal dementia, a common form of dementia in people under 60. This important study is recruiting volunteers without dementia between the ages of 20 and 80 through Join Dementia Research.
The progress made in dementia research over the last 10 years is inspirational and would not be possible without research volunteers. Anyone over the age of 18, with or without a dementia diagnosis, can get involved in research by registering to Join Dementia Research. By signing up you are helping us edge ever closer to the possibility of a world without the fear, harm and heartbreak of dementia. To celebrate the 6th birthday of Join Dementia Research with us by signing up, you can do so online at Join Dementia Research
Government funding for dementia research still lags behind other serious health conditions, and the financial impact of the pandemic has meant that there are now fewer funding opportunities for these vital studies. That’s why Alzheimer’s Research UK is calling on the government to honour its promise of doubling its investment in dementia research to over £160 million a year, to allow this vital research to continue. If you would like to sign our petition you can do so below.