Reporting of early symptoms of dementia varies across ethnic groups
People from different ethnic backgrounds may report physical symptoms, rather than purely cognitive difficulties, leading to delays in the diagnosis of dementia.
A dementia diagnosis is most commonly triggered by reporting memory difficulty to a GP, but the early stages of dementia can cause other symptoms, including depression, weight loss, low blood pressure and dizziness. Many studies of early symptoms of dementia have used data from predominantly White patients, but new WIPH-led research finds that the symptoms people report to their GP before they receive a dementia diagnosis differ according to their ethnic background. 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 to reduce health inequalities in access to a dementia diagnosis.
The study investigated 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 work, 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 examined a range of symptoms that patients reported to their GP up to ten years before they received a diagnosis of dementia, and compared these with people of the same age without a dementia diagnosis. In addition to memory difficulties, noted symptoms included depression, anxiety, use of antipsychotics, insomnia, constipation, incontinence, hypotension, hearing loss, pain, imbalance and dizziness. The study 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. Findings showed that several symptoms (constipation, incontinence, imbalance, dizziness, musculoskeletal pain and insomnia) were more commonly reported before a dementia diagnosis in Black and South Asian people than White people.
Charles Marshall, Professor of Clinical Neurology in the WIPH Centre for Preventive Neurology, said: ‘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: ‘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.’
Sedigheh Zabihi, Jonathan P Bestwick, Mark Jitlal, Phazha LK Bothongo, Qiqi Zhang, Christine Carter, Moïse Roche, Sarah Morgan-Trimmer, Yvonne Birks, Mark Wilberforce, Ruth Dobson, Alastair J Noyce, John Robson, Fiona M Walter, Claudia Cooper, Charles R Marshall. Early presentations of dementia in a diverse population. Alzheimer’s Dement. 26 February 2025;e14585. https://doi.org/10.1002/alz.14578