Improving dementia diagnosis and care

Dementia is the UK’s leading cause of death¹ and a growing public health challenge. Our researchers are working to overcome these challenges, tackling the condition from all angles. Working in collaboration with local communities, the NHS and policymakers, their aim is to improve dementia diagnosis and care across the board.

Engaging communities to tackle inequalities 

For decades, assessment of early dementia symptoms has been based predominantly on data from white patients. This limited understanding of how dementia symptoms present among people from other ethnic backgrounds is contributing to misdiagnosis and missed opportunities for early support for people from diverse backgrounds.  

Researchers at Queen Mary set out to address this gap by studying early dementia symptoms among diverse populations. 

In one such study, Charles Marshall, Professor of Clinical Neurology at Queen Mary’s Wolfson Institute of Population Health (WIPH), and his team collaborated with the Hackney Caribbean Elderly Organisation in (HECO) in East London for six years to better understand the symptoms its service users present with before a dementia diagnosis.  

Their study found that Black and South Asian people were more likely to report symptoms other than memory loss – such as constipation, incontinence, imbalance, dizziness, musculoskeletal pain and insomnia – to their GP before receiving a dementia diagnosis. 

This work to improve diagnosis of dementia follows on from Professor Marshall’s landmark study which showed a dementia diagnosis can be predicted up to nine years in advance. 

¹ Dementia is the UK’s leading cause of death

Improving dementia care   

Beyond improving diagnosis, our researchers are redefining what dementia care looks like by creating evidence-based programmes that improve quality of life and deliver measurable savings for the NHS.  

For example, the New Interventions for Independence in Dementia (NIDUS)-Family package of care, designed by Queen Mary researchers, helps people with dementia live well at home by focusing on practical, person-centred goals such as improving sleep or supporting carers’ wellbeing.  

To test the effectiveness of the NIDUS-Family package, Professor Claudia Cooper at the WIPH carried out a randomised clinical trial. The results, published in The Lancet Healthy Longevity, show that people who received the NIDUS-Family support package cost the NHS and social care almost £9000 less per person over a year than those receiving usual care. They also showed that this support package significantly helped participants achieve their own goals, making it the first personalised post-diagnostic support programme to demonstrate both improved quality of life and cost-effectiveness. 

Informing policy  

Our researchers also work directly with policymakers to ensure that research and evidence drive the National dementia strategy, prevention framework and service design.  

In a recent study led by academics in the NIHR Policy Research Unit in Dementia and Neurodegeneration at Queen Mary, a panel of experts developed the Nottingham Consensus. 

This a comprehensive set of 56 policy recommendations outline ways to reduce people’s risk of developing dementia, and aim to shift public health strategy towards prevention, equity and structural action. The consensus highlights four priority areas for government and others to focus on:  

• Reforming public messaging to improve awareness of brain health and dementia risk among the public. 
• Identifying and treating individual risk factors for dementia, such as hearing loss and high blood pressure. 
• Addressing the important structural factors influencing brain health that are outside an individual’s control (such as socioeconomic deprivation and air pollution). 
• Targeting research funding to address the gaps in our understanding of how best to reduce dementia risk. 

Across all recommendations, the panel emphasised the need to tackle health inequalities so that everyone – regardless of background – has the same chance of healthy brain ageing. The framework offers clear, practical guidance for embedding dementia risk reduction into the national public health and social care policy, ensuring that evidence informs real change.