A joint UKDTN and Alzheimer’s Society survey of 1,200 patients and carers revealed strong interest in research but low participation, with findings to inform future UKDTN priorities and improve participant experience.
UKDTN’s patient workstream is committed to improving diversity and inclusivity in dementia clinical trials. They have developed a strategy to adapt proven approaches from studies such as the Alzheimer’s Disease Neuroimaging Initiative (ADNI) for use in UK trials. Earlier this year, the patient workstream led a successful outreach event for Dementia Awareness Day with the London Chinese community, featuring expert talks, lived experience sharing, and workshops focused on dementia education and brain health. The event was well attended with around 80 attendees, and post-event surveys showed increased understanding of dementia and strong interest in future research participation.
“By listening, learning, and collaborating, we’re building a more inclusive future for dementia research.”
A joint survey by the Alzheimer’s Society and UKDTN gathered responses from over 1,200 patients and carers, capturing their experiences with dementia research. The data, currently being analysed, will serve as a baseline for evaluating the impact of UKDTN interventions and will be shared later this year. Initial findings show strong interest in research: 96% believe it is important, and 90% want to be informed about opportunities to take part. However, few received information, and even fewer participated in clinical trials. These insights will guide improvements in participant experience and help shape future priorities.
By UKDTNAdmin