Rare dementia and misdiagnosis
Research type
Research Study
Full title
Experiencing a misdiagnosis before receiving a rarer subtype of dementia: A qualitative interview study
IRAS ID
359557
Contact name
Abbie Dickinson
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
1 years, 8 months, 16 days
Research summary
Alzheimer’s disease is a type of dementia that is commonly diagnosed. However, there are other rarer subtypes of dementia which are less common and can be more difficult to diagnose. People are often misdiagnosed with depression or another subtype of dementia. People who are misdiagnosed can often wait long periods of time with thorough testing to confirm their diagnosis, therefore delaying timely post-diagnostic support. This study aims to explore the lived experiences of individuals living with a rarer subtype of dementia who have been misdiagnosed. A qualitative methods approach using semi-structured interviews will be used. People who have received a diagnosis of a rarer subtype of dementia will be invited to take part in the study. Their involvement would mean taking part in a 45–60-minute interview. The study will be advertised to clinics including neurology, psychology and memory clinics from NHS trusts within the Northwest of England. The study will also be advertised to the ’Joined Dementia Research’ network. The study is planned to be completed by August 2027.
REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
26/YH/0030
Date of REC Opinion
9 Mar 2026
REC opinion
Further Information Favourable Opinion