Reporting of early symptoms of dementia varies across ethnic groups, study finds

People from different ethnic backgrounds may report physical symptoms rather than purely cognitive difficulties, leading to delays in the diagnosis of dementia.

A new study led by 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 most common way to receive a diagnosis of dementia is to see a GP with memory difficulty, however the early stages of dementia can cause other symptoms such as depression, weight loss, low blood pressure and dizziness. Cultural background is likely to influence which symptoms people choose to tell their GP about. A greater recognition of these non-cognitive signs and symptoms, and of the barriers that could lead to under-reporting of cognitive symptoms amongst particular groups, could help reduce health inequalities in access to a dementia diagnosis. 

At Queen Mary University of London, we pride ourselves on engaging with our local communities and learning from them. Professor Charles Marshall developed this piece of research in response to observations shared with him from the Hackney Caribbean Elderly Organisation – that their service users living with dementia often described physical pain, rather than cognitive symptoms. 

Given many studies of early symptoms of dementia have used data from predominantly white patients, Professor Charles Marshall and colleagues set out to investigate patterns of presentation to primary care prior to dementia diagnosis in a diverse population with substantial proportions of people identifying as Black or South Asian. 

The research, funded through the NIHR Three Schools Dementia Programme, used a nested case-control study of anonymised data from primary care electronic health records of over 1 million people in East London. Health records of 4,137 individuals with a dementia diagnosis and 15,754 matched controls were examined.

Researchers combed the data, looking at a range of symptoms that patients reported to their GP up to ten years before they received a diagnosis of dementia and comparing these to people of the same age who did not receive a dementia diagnosis. In addition to memory difficulties, the symptoms noted included depression, anxiety, use of antipsychotics, insomnia, constipation, incontinence, hypotension, hearing loss, pain, imbalance and dizziness. The research investigated whether people from minority ethnic groups were more likely to report non-cognitive symptoms to their GP, perhaps due to stigma about dementia, distrust of healthcare systems, or other sociocultural factors.

The study found evidence that several symptoms were more commonly reported before a dementia diagnosis in Black and South Asian people than White people. In particular, South Asian and Black patients more commonly had recordings of constipation, incontinence, imbalance, dizziness, musculoskeletal pain and insomnia prior to their dementia diagnosis.

Professor Charles Marshall, Professor of Clinical Neurology and lead of dementia research at Queen Mary’s Centre for Preventive Neurology, said: “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. 

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.”

Dr Richard Oakley, Associate Director of Research and Innovation at Alzheimer’s Society said: “Around one million people in the UK are living with dementia, but a third of these have not received a diagnosis. This is despite us knowing that an early and accurate diagnosis is key to ensuring everyone has access to the treatment, care and support they deserve.  

“Dementia affects every part of the population and research shows that people from Black and South Asian backgrounds have a higher risk of developing dementia. However, they are often underrepresented in dementia studies so it’s excellent to see this research, which is the first to explore how the early signs of dementia are reported to clinicians by diverse groups.

“Understanding how early dementia symptoms are reported in underrepresented populations is crucial, especially in cultures where stigma may prevent people from seeking help for memory loss. If you’re worried about yourself, or someone close to you, then check your symptoms using Alzheimer’s Society’s symptom checklist at alzheimers.org.uk/checklist.”