People living with dementia will play a central role in addressing a long-standing weakness in research — the clinical trial evidence gap — through a new home-based study designed to expand participation beyond traditional hospital settings.
While those over 65 account for approximately two-thirds of illness in the UK, they represent only around one-third of clinical trial participants. This “participation gap” means that many medicines and interventions are studied in populations that may not fully reflect the daily realities of the nearly one million people currently living with dementia in the UK.
In a first-of-its-kind collaboration in the home care sector, individuals supported by nationwide home healthcare provider Cera will have the opportunity to participate in a major dementia research programme designed to capture insights beyond clinic environments.
Cera is partnering with GlobalMinds, a large-scale mental health research initiative, to help broaden inclusion of older adults in research. The collaboration aims to contribute to improved understanding of dementia progression and support the long-term development of more tailored approaches to prevention and treatment.
Dementia remains one of the leading causes of death in the UK, accounting for more than 70,000 deaths annually according to recent national statistics. With the number of people living with dementia projected to rise to 1.4 million by 2040, expanding research participation is considered an urgent national priority.
This initiative aligns with calls from the National Institute for Health and Care Research (NIHR) and other UK research funders to improve inclusion of older adults in health and care studies, addressing concerns that they have historically been under-represented in clinical research.
Expanding Research Beyond Hospital Walls
Cera’s home-based care model enables researchers to collect real-world insights into cognitive health and lived experience that may not be captured during routine hospital appointments. By facilitating participation from individuals who may otherwise face barriers to travel, the partnership seeks to help close the evidence gap in dementia research.
GlobalMinds is run by Akrivia Health, a UK-based mental health and dementia data company. The study combines multiple sources of health information — including NHS records, questionnaire responses, and biological samples such as DNA — to build a longitudinal dataset designed to support future dementia research.
The programme is conducted in partnership with Cardiff University. Researchers will examine how current treatments are used in real-world settings and explore biological and environmental factors that may influence disease progression. The broader goal is to contribute to ongoing scientific efforts to better understand individual variation in dementia.
All participation in the study is voluntary and subject to appropriate ethical approvals, informed consent processes, and strict data protection safeguards. Data used for research purposes is handled in accordance with UK regulatory standards.
Supporting the Move Toward Personalised Approaches
The study plans to collect multi-modal data from up to 1,000 individuals living with dementia or mild cognitive impairment. By layering clinical records with biological information such as genomics, researchers aim to better understand how different factors may influence cognitive decline over time.
This type of approach is often described as “precision medicine,” where researchers analyse patterns across genetic, biological, and clinical data to support the development of more targeted research hypotheses and future therapeutic strategies. Precision approaches have already advanced understanding in areas such as oncology, and researchers hope similar methodologies may strengthen dementia research over time.
Professor James Walters, Chief Investigator for GlobalMinds at Cardiff University, said:
“Our partnership with Cera enables us to better capture the lived experiences of people with dementia in everyday settings. Broadening participation at scale is an important step in strengthening the evidence base and ensuring future research reflects real-world patient populations.”
Building Research Infrastructure at Scale
Akrivia Health works with a network of NHS hospitals across England and Wales, providing access to large volumes of anonymised mental health records to support ethically approved research. By augmenting structured clinical data with questionnaire responses and biological samples from consenting participants, the GlobalMinds initiative seeks to enhance the depth and quality of dementia datasets available to researchers.
Cera’s digital home care platform enables carers and nurses to record structured health information during millions of home visits each month. Aggregated and appropriately governed data from these visits may contribute to research aimed at understanding how health conditions evolve over time in community settings.
A Step Toward Greater Inclusion in Dementia Research
The collaboration reflects a broader shift in research design — moving from hospital-centric studies toward models that better reflect how people live with chronic conditions day to day.
By expanding access to research participation for individuals receiving care at home, the study aims to strengthen representation of older adults in clinical evidence and support long-term scientific understanding of dementia.
Further information about the GlobalMinds Dementia study is available at:
https://dementia.globalminds.org
