In plain English
UK dementia research is active across prevention, early diagnosis, disease-modifying treatments and care. Join Dementia Research is the national platform that matches volunteers with relevant studies. Participation is voluntary and helps the next generation of treatments.
Why clinical trials matter
Every treatment available today exists because earlier patients took part in research. Several promising approaches to dementia are now in late-stage trials, particularly for early Alzheimer's Disease. Wider participation accelerates progress and may give individual participants early access to new treatments.
Join Dementia Research
Join Dementia Research is the national platform run by the National Institute for Health and Care Research (NIHR) with the Alzheimer's Society, Alzheimer's Research UK and Alzheimer Scotland. It is free, takes 10 minutes to register, and matches volunteers with studies they may be eligible for. Around a quarter of UK dementia trial recruitment goes through Join Dementia Research.
You can register at joindementiaresearch.nihr.ac.uk. Studies range from short online questionnaires to multi-year drug trials. Registration does not commit you to anything; you choose which studies to consider when you are contacted.
Who can take part
Some studies are for people with a confirmed dementia diagnosis. Others are for people with Mild Cognitive Impairment, people at risk (family history, APOE4), or healthy older adults. Carers and family members can also take part in carer-focused research.
Current major UK trial areas
Anti-amyloid antibodies
Following the licensing of Lecanemab and Donanemab, several next-generation anti-amyloid trials are recruiting, particularly for early Alzheimer's Disease (Mild Cognitive Impairment due to Alzheimer's, mild dementia). Eligibility typically includes amyloid confirmation (PET or CSF).
Anti-tau therapies
Trials of anti-tau antibodies and small molecules are in earlier phases.
Lifestyle and prevention
Large-scale prevention trials (FINGER, MIND, US-POINTER and UK equivalents) are recruiting people at risk to test combined lifestyle interventions.
Vascular and metabolic interventions
Studies of vascular risk reduction, repurposed metabolic medicines (Empagliflozin, Semaglutide) and combination approaches.
Dementia with Lewy Bodies and Frontotemporal Dementia
Trials specifically for these subtypes are smaller but growing; some target underlying alpha-synuclein or specific genetic causes.
Care and quality of life
Non-pharmacological trials of carer support, cognitive interventions, environmental design, and end-of-life care.
What participation involves
Trial participation varies by study. Typical elements include:
- An informed consent conversation;
- Baseline assessments (cognitive testing, blood tests, imaging);
- Randomisation in placebo-controlled trials;
- Regular visits (often monthly to quarterly) for the duration of the study;
- Compensation for time and travel;
- The right to withdraw at any time without affecting your usual care.
Risks and protections
Trials carry risks specific to the intervention being tested. UK research is regulated by the Medicines and Healthcare products Regulatory Agency and Research Ethics Committees, with detailed informed consent processes. Anti-amyloid antibody trials in particular carry the risk of ARIA (see Lecanemab and Donanemab); careful screening and monitoring reduce this.
Where to find trials
- Join Dementia Research: the main UK platform;
- UK Clinical Trials Gateway: searchable register of UK studies;
- ClinicalTrials.gov: international register, searchable by location;
- Alzheimer's Society Research: information on funded studies;
- Dementia Research Institute: UK-wide research network;
- Local memory clinics: often participating in trials;
- The Dementia Service: can advise on trial options.
Should I take part?
The decision is personal. Reasons to consider participation include:
- Contributing to research that may help future patients;
- Access to additional investigations and specialist input;
- Possible early access to a new treatment;
- Closer monitoring than routine care.
Reasons to consider not participating include:
- Time commitment of trial visits;
- Risk of side effects from experimental treatments;
- Possibility of receiving placebo in randomised trials;
- Stress of additional appointments and assessments.
Discussion with family, your memory clinician and the trial team helps clarify whether a specific study suits you.
Frequently asked questions
Will I have to take an experimental drug?
Drug trials are one type. Many studies are non-interventional (questionnaires, observation, lifestyle programmes). You choose which to consider.
Are trials safe?
UK trials are regulated by the MHRA and Research Ethics Committees. Risks are reviewed, disclosed in informed consent and monitored throughout. Some intervention trials carry specific risks.
Will I be told the result?
Trials publish results. Individual participants are usually informed of overall findings. In placebo-controlled trials you may not learn whether you received placebo until the trial finishes.
Can I withdraw?
Yes, at any time, without affecting your usual care.
Is participation paid?
Trials typically reimburse travel and time. Larger payments are not usual in NHS-based research.
References
- Join Dementia Research. https://www.joindementiaresearch.nihr.ac.uk
- NIHR. Dementia and neurodegeneration research portfolio.
- Alzheimer's Research UK. Current research.
- UK Dementia Research Institute. https://www.ukdri.ac.uk