Research is vital to improving our understanding of dementia, so we can develop interventions and treatments. But finding people to join clinical trials and other research projects can be difficult.
The Prime Minister’s Challenge on Dementia 2020 set a target for 10% of people diagnosed with dementia in England to be taking part in research. But only 2% of people with a diagnosis of dementia in the UK are currently registered as research volunteers with Join Dementia Research. By comparison, around 20% of cancer patients in the UK are recruited to cancer studies. The UK ranks only seventh in its recruitment of UK patients to global studies and has been on a downward trend since 2015, while other countries such as Spain, France and Australia have seen steady increases.
Barriers to involvement
Three main factors lead to a lack of involvement in research. Firstly, there is low awareness among both the general public and healthcare professionals about how to get involved. Surveys show that 89% of the UK public would want to take part in clinical research if they were diagnosed with a medical condition or disease, but more than four in five people (81%) wouldn’t know how to volunteer. Similarly, 80% of healthcare professionals surveyed wanted more information on clinical trials. Timing is very important as it has been estimated that 86% of people with dementia do not visit a GP before their condition worsens to the point where they cannot participate in clinical trials.
The second barrier relates to the challenges of the enrolment and trial processes which can be confusing for people with dementia. Many trials require a person with dementia to have a ‘study partner’ who can help with travel to trials, providing medication and monitoring. This may exclude some people with dementia from enrolling in trials, particularly if a carer or family member is not able to provide that support.
Additionally, lack of early and accurate diagnosis makes it difficult to match people to clinical trials effectively. Most clinical trials require participants with a specific type of dementia at an early stage of progression.
What we are doing
We’re calling for a Dementia Medicines Taskforce which would bring together would bring together representatives from industry, the NHS, charities and researchers to fast-track the development and delivery of new medicines. This would include a focus on boosting the number of people in the UK taking part in large, late-stage dementia trials and the establishment of a dementia health and care registry to match clinical trial participants to the right studies.
We’re also contributing to the government’s Dementia Strategy, including making the case for increased participation in research.
Alzheimer’s Research UK, alongside Alzheimer’s Society and Alzheimer Scotland, are partners in the National Institute for Health Research (NIHR)-led initiative called Join Dementia Research. This is a national service which enables people to register their interest in taking part in research.
What we believe
We believe that:
- People should be informed about research opportunities at the point of diagnosis. Training for healthcare professionals and a programme of communication to all patients who are newly diagnosed with dementia is needed.
- Patients and carers should be given appropriate support during the enrolment process and clinical trial procedures.
- Every person in the UK with dementia should receive an early and accurate diagnosis,