Study reveals early dementia symptoms may vary across different ethnicities

Professor Charles Marshall and Lullyn from the Hackey Caribbean Elderly Organisation

A new study led by Professor Charles Marshall at Queen Mary University of London has found that the symptoms people describe to their GP before they receive a dementia diagnosis differ according to their ethnic background. The findings are published today in Alzheimer's & Dementia: The Journal of the Alzheimer's Association. 

At Queen Mary University of London, we pride ourselves on engaging with our local communities and learning from them. Professor Charles Marshall has been working with local community group the Hackney Caribbean Elderly Organisation (HCEO) over the past six years – he regularly visits the Organisation to raise awareness about dementia and discuss his research and speak with members about their own lived experiences with dementia.  

Watch Professor Charles Marshall and Lullyn from the Hackey Caribbean Elderly Organisation discuss the research and why it’s important to include people with lived experience in research.  

A few years ago, Lullyn from HCEO emailed Professor Charles Marshall with observations that their service users living with dementia often described physical pain and almost none of them described cognitive symptoms, which are the most common symptoms that GPs look out for when referring patients to a memory clinic. Professor Marshall developed a piece of research to address this, with funding through the NIHR Three Schools Dementia Programme. 

Many studies of early symptoms of dementia have used data from predominantly white patients, so the team set out to investigate the symptoms that different populations describe to their GP ahead of a dementia diagnosis.  

The team analysed anonymised GP records of over a million people in East London boroughs to see what people were reporting to their GP up to ten years before dementia diagnosis and compared these to records of people who did not receive a GP diagnosis. In addition to memory difficulties, they found that people who went on to receive a dementia diagnosis were more likely to complain of depression, anxiety, use of antipsychotics, insomnia, constipation, incontinence, hypotension, hearing loss, pain, imbalance and dizziness. 

The team also found that people from Black and South Asian people were more likely to report non-cognitive symptoms – constipation, incontinence, imbalance, dizziness, musculoskeletal pain and insomnia prior to their dementia diagnosis – to their GP compared to others. This is perhaps due to stigma about dementia, distrust of healthcare systems, or other sociocultural factors.  

“Getting a timely dementia diagnosis requires prompt recognition of symptoms that suggest that somebody might be developing dementia. We tend to focus mainly on memory problems as the reason for assessing someone for dementia, but this is a problem because dementia doesn’t just affect memory, and because for cultural reasons people may be more or less likely to report memory difficulty to their GP,” says Professor Charles Marshall, Professor of Clinical Neurology and lead of dementia research at Queen Mary’s Centre for Preventive Neurology. 

“We hope that this work will improve culture-fair recognition of possible dementia in primary care so that everyone can benefit equally from diagnosis, care and emerging treatments for dementia.” 

By engaging with people in the local community and including people with lived experience – particularly groups that are underrepresented – in research, we can raise awareness of dementia, tackle stigma in the community and ultimately, tackle health inequalities in our local community and across the world.