New Joint Webinar Programme Announced
09-01-2021
Dementia Action Week is an awareness campaign led by the Alzheimer’s Society, bringing people and organisations together to take action on dementia.
Dementia is the UK’s leading cause of death, and around one in three people born in the UK today will develop it during their lifetime.
Across the country, many Registered Clinical Trials Units (CTUs) are carrying out vital research into dementia, from prevention and treatment to better support for carers. Below, you can read about just a few of these important studies.
The SleepBoost study is one of five new MRC-funded studies awarded £16.5 million to help identify new ways to treat or slow down neurodegenerative diseases before symptoms worsen.
Over 55 million people live with dementia, costing over US$1.3trillion worldwide. Alzheimer’s disease, the commonest cause of dementia, is slowly progressive, with changes in the brain long before noticeable clinical symptoms.
Earlier treatment is best for people to keep their independence and quality of life.
The SleepBoost study, led by Professor Coulthard and the Bristol Trials Centre at the University of Bristol, will focus on a phase of sleep known as slow-wave sleep, which plays a key role in removing harmful proteins from the brain. The study is currently in set up with an aim to begin recruitment later in the year.
The study aims to assess whether improving sleep helps prevent Alzheimer’s dementia. The study will specifically improve the quality of slow-wave (deep) sleep and measure the effect on Alzheimer’s markers in the blood. Recruitment will take place across 11 locations in the UK, with a focus on including South Asian communities who may be more affected by poor sleep. By using sleep recordings, brain activity monitoring, scans, blood and spinal fluid samples, and memory tests to measure impact, we hope our findings will lead to a better understanding of the links between sleep and Alzheimer’s. Our vision is a new class of tailored Alzheimer’s disease treatments based on a new mechanism of neurodegeneration.
Find out more here: https://www.bristol.ac.uk/news/2026/january/165-million-to-investigate-neurodegenerative-diseases.html
RD-TALK is a National Institute for Health and Care Research (NIHR, https://www.nihr.ac.uk/) funded research programme that focuses on rarer dementias that are either genetic (such as familial Alzheimer’s disease or familial frontotemporal dementia) or non-memory led, involving initial difficulties with language (PPA), vision (PCA) or personality changes (bvFTD).
As part of the RD-TALK programme two RCTs are being conducted, BELIDE and IWARF.
BELIDE assesses the effectiveness of an online education course programme (“Better Living with non-memory led dementia”) in improving the psychological wellbeing of carers of people with rarer dementias. IWARF examines the effectiveness of a digital programme (“Improving Wellbeing Associated with Rare Familial dementias”) in improving the psychological wellbeing of people at risk of genetic dementia.
NWORTH CTU (https://www.bangor.ac.uk/nworth), which is a member of the UK Registered CTU Network, manages the data, statistical and methodological aspects of both the BELIDE and IWARF RCTs. Dr Joshua Stott is the Chief Investigator and the Trial Statistician is Dr Andrew Brand.
For further information about RD-TALK research programme, please visit: https://www.raredementiasupport.org/research/rd-talk/
The CareCoach Study, coordinated by the Norwich Clinical Trials Unit (CTU) at the University of East Anglia and funded by the National Institute of Health and Care Research (NIHR), is testing whether an online package of support for carers of people with dementia has an effect on the carer’s mood, their overall quality of life and/or their sense of being able to care well.
As part of the study, CareCoach provides carers with access to online learning modules and support from a ‘coach’ (health, social care or charity worker) over 8-weeks.
CareCoach is a support package that can be delivered remotely. This allowed the research team to recruit carers from across the UK remotely via social media and healthcare services. Advertising the study on social media proved to be a successful way to reach carers. So successful that 18% of participants (73 carers) joined the study through social media!
Managing the trial centrally at the Norwich CTU was key in ensuring data was high quality and strong recruitment. This streamlined approach helped the study meet its recruitment target (404 carers) on time within 12 months. In fact, CareCoach was one of the fastest recruiting trials funded by NIHR in 2025-2026 in the UK.
Strong interest from carers wanting to take part in the study highlights the need for more support for those caring for people living with dementia. Results are expected later this year, with plans to explore making CareCoach available to carers who need it most.
Read more about CareCoach: https://carecoachtimes.org/carecoach/
A participant shares their CareCoach experience: https://news.joindementiaresearch.nihr.ac.uk/how-dementia-research-is-helping-support-carers/
NWORTH is excited to announce that the “Being Kind to Ourselves” study – a full-scale Randomised Controlled Trial (RCT) evaluating Compassion Focused Therapy (CFT) for improving depression and anxiety in individuals with dementia – was granted NIHR RfPB funding in August 2025 (NIHR209908). The study is led by Chief Investigator Prof Aimee Spector; Rachel Evans is the Senior Statistician and Co-investigator.
This RCT directly follows the success of the preceding NIHR RfPB-funded feasibility trial (NIHR203524), which demonstrated the potential of group CFT for participants living with dementia and depression and/or anxiety. This successful groundwork provides a robust foundation for the larger, definitive study.
The feasibility phase data will serve as an internal pilot and will be incorporated into the final trial dataset. The full RCT requires a total sample of 304 participants. Importantly, 73 participants have already been successfully recruited and randomised during the feasibility phase. Therefore, the primary recruitment goal for this next phase is securing a further 231 participants to reach the required sample size. Recruitment is scheduled to commence in January 2026.
The trial is building upon the established infrastructure of the initial study. While 7 sites participated in the feasibility trial, some of which will continue with the RCT, complemented by the opening of new sites to accelerate participant enrolment.
The first time this model of funding has been used by NWORTH CTU and offers an exciting opportunity to optimise existing resources and accelerate the RCT timeline.
Read a personal reflection on dementia, research, and advocacy by Simon Denegri OBE, Chair of the CTU Network Executive Group, Chair of Dementia Disco, and Chair of Sense About Science here.
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If you have any questions about the site, please feel free to contact us. We are always looking for ways to better serve our members - YOU are important to us!
