Clinical dementia trials need more volunteers

Dementia research finally has a growing pipeline of promising new treatments but a shortage of people taking part in clinical trials risks slowing this momentum, the World Alzheimer Report: A new era in dementia clinical trials warns.

Co-authored by Alzheimer’s Disease International and health journalist Paul Gallagher, the release of the 108-page report on 21 September coincided with World Alzheimer’s Day.

It showed that in 2026, more than 158 potential therapies are being evaluated across more than 192 clinical trials worldwide. But these active studies require an estimated 55,000 participants to be fully sustained.

Stringent screening criteria mean many potential participants never make it into trials, creating a need for an estimated 350,000 people to volunteer to fill recruitment needs, ADI noted.

ADI acting chief executive officer Chris Lynch said major barriers to recruiting trial participants risk slowing progress right when the world is “on the cusp of a revolution in dementia diagnostics and treatments”.

“Each potential new diagnostic tool or treatment relies on people coming forward to volunteer to take part in research, but very low awareness of trials and a flawed referral process from doctors and specialists not only risk slowing down progress but can deny people their right to participate in trials,” he said.

The key barriers to clinical trial participation include:

• delayed diagnosis
• limited access to specialist testing
• travel costs
• language barriers
• potential need for a care partner to be present.

Global investment in early diagnosis needed

These challenges are further complicated when trying to recruit trial volunteers in the pre-symptomatic or at-risk stages of Alzheimer’s and other dementias because even if someone is interested, their medical or treatment history may make them ineligible.

Mr Lynch said it is “essential” that governments around the world invest in early diagnosis, research infrastructure and public trial readiness. But there also needs to be greater awareness among medical professionals who can recommend trials to people living with dementia.

“Trial sponsors must also continue to innovate and build further diversity into research from the outset and reduce unnecessary demands on participants and care partners. Remote assessments, local testing, mobile research services, and simpler requirements could make trials accessible to people currently excluded by cost, distance, or caring responsibilities,” he said.

ADI board member Bill Yeates has been living with younger-onset dementia and encourages people to engage with clinical trials, something he himself has done.

“From the very beginning, I believed that if we are ever going to find more effective treatments – or dare I say a cure – for Alzheimer’s disease, it will be through research and the willingness of people living with dementia to participate in clinical trials,” said Mr Yeates.

“Taking part was about being part of something much bigger than myself and helping create a future where others living with dementia might have access to better treatment options than are currently available today.”

The 2026 World Alzheimer’s Report outlines 10 recommendations, including:

For governments and policymakers to:

1. invest in national diagnostic capacity and early detection pathways
2. create incentives for clinical trials in underserved regions
3. invest in dementia research infrastructure, diagnostic pathways and public trial readiness globally.

For national Alzheimer’s associations to:

• strengthen the role of national Alzheimer’s associations in dementia research and innovation

For trial sponsors and regulators to:

• embed diversity and inclusion into trial design from the outset
• reduce participant burden and strengthen participant-centred trial models
• continue strengthening safety standards and communication.

For researchers and clinicians to:

• prioritise clinically meaningful outcomes
• further embed people living with dementia and carers in trial design and strengthen clinician referral pathways
• expand investment beyond Alzheimer’s disease.

Read the full report here.

Read other clinical stories here
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