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The NIHR Global Health Research Group on Dementia Prevention and Enhanced Care (DePEC) is improving dementia prevention, diagnosis and management in low-resource settings with limited access to specialist services. Working across South Asia, Malaysia and Tanzania, the group has generated scalable evidence that is shaping global policy, developed practical tools to support earlier identification and strengthened community-based care.
Its work has informed international guidance and UK practice, built lasting local research capacity and extended dementia care skills beyond specialist clinics to families and frontline health and social care workers.
Impact at a glance
Creating a lasting global impact
DePEC has contributed evidence directly informing the World Health Organisation’s Alzheimer’s Disease International Global Action Plan and Alzheimer’s Disease International’s World Alzheimer Report (.PDF). This has strengthened global guidance on dementia care models, particularly in low-resource settings.
Enabling earlier identification and support
The group developed and tested practical diagnostic tools that help non-specialist health workers identify people at risk of dementia earlier. This enables faster access to advice, care planning and support for individuals and families.
Secondary benefits for the UK and building local capacity
DePEC supported the creation of the first dementia-focused patient and public involvement initiative in Tanzania. This has helped build sustainable support beyond the life of the project. Their findings have also informed UK practice, contributing to the development of the PriDem programme, funded by the Alzheimer’s Society to develop and test a ‘good practice’ model of primary care led, post diagnostic dementia care.
Supporting research careers and leadership
The group has provided opportunities for researcher career development. For example, Dr Ríona Mc Ardle’s secondment with DePEC strengthened her insight into the lived experience of dementia and led to a strong collaboration with DePEC’s Director, Professor Dame Louise Robinson. This led to her securing an NIHR Advanced Fellowship and an NIHR Three Schools Dementia Career Development Award.
The global challenge
Dementia is one of the fastest-growing global health challenges. It is a leading cause of disability and dependency in later life. It has major and rising health, social and economic impacts worldwide.
Over 60% of people living with dementia are in low and middle income countries (LMICs), where healthcare systems are often not equipped to meet the growing demand as populations age. DePEC has responded to this challenge by improving dementia prevention, diagnosis and care in settings with limited access to specialist services. It develops practical approaches that can be delivered through existing health and social care systems.
DePEC’s research tested existing dementia prediction models. They found that those developed and tested in high income countries may not translate to LMIC settings. DePEC has addressed this gap by generating evidence in LMICs facing these challenges now. This is helping to shape models that work in LMICs. Understanding who is at risk of dementia is essential to develop effective prevention strategies.
A qualitative study by the group found that dementia care and support services in Malaysia are not fully utilised due to regional differences in infrastructure and available facilities. They identified barriers to access and gaps in current services. This includes a public perception that dementia symptoms are normal signs of ageing and a limited knowledge of diagnosis guidelines in some clinics. These findings have given policymakers clearer evidence on where improvements are most needed, including facilitating patient referral between primary, secondary and social care.
Developing effective tools and interventions
The team developed the IDEA Screening App to help non-specialist health workers identify older people at risk of dementia in community settings. The tool was tested in Tanzania and later adapted and further tested in Kerala, with more than 3,000 people screened. This has expanded access to earlier identification and referral, helping reach people who may otherwise go undiagnosed. Key findings from the group’s work were presented at the 2024 World Dementia Council summit. The IDEA tool is currently being used and tested more widely in 6 African countries, as part of the NIHR Global Health Research Group on Transforming Parkinson’s Care in Africa (TraPCAf), showing great potential for scale up.
Capacity strengthening, community engagement and innovation
The team developed 2 free Massive Open Online Courses (MOOCs) for families and health and social care professionals supporting people living with dementia. These courses help people accessing a diagnosis and early support, as well as living with advanced dementia and planning for end of life. From 2025, the courses became freely available on the Newcastle University website. This practical training has built confidence and skills among carers and frontline staff. This is particularly crucial where specialist training opportunities are limited. Over 4,000 people have taken part, from 140 countries. These resources won the Outstanding Educational Resource category at the 2019 UK National Dementia Care Awards.
The group helped to build long-term regional capacity. It brought together established LMIC networks and new partners from Southeast Asia and Tanzania. This has created a global, multi-disciplinary translational research group. This supports knowledge-sharing between countries facing similar challenges and helps successful approaches to be adapted for use in different settings.
“The NIHR DePEC programme explored the potential of a task-shifted, primary care-based model of dementia care for LMICs. This work directly led to further national research funding, 1 of 3 Alzheimer Society Centres of Excellence in Dementia Care Research, to co-develop, pilot and test such a model in the NHS. Key findings of this work have also been submitted as evidence to the new NHS Modern Service Framework for Dementia and Frailty.”
Looking ahead
DePEC has shown that effective dementia prevention and care does not need to depend solely on specialist services. With the right tools, training and partnerships, earlier identification and better ongoing support can be delivered through community and primary care systems.
This work benefits people living with dementia, their families, healthcare workers and over-stretched health systems. It also demonstrates how sustained research investment can generate practical solutions for countries where the future burden of dementia will be greatest.
Find the original post and more at: https://www.nihr.ac.uk/story/improving-dementia-care-through-community-based-support
