Multicenter study investigating delayed/misdiagnosis of DLB
Research type
Research Study
Full title
Multicenter study to identify the main factors responsible for delayed or misdiagnosis in patients with Dementia with Lewy Bodies
IRAS ID
354495
Contact name
Zuzana Walker
Contact email
Sponsor organisation
Centre Hospitalo-Universitaire (CHU) Brugmann
Clinicaltrials.gov Identifier
CE 2024/137, Sponsor's (CHU Brugmann) ethical approval reference
Duration of Study in the UK
0 years, 7 months, 15 days
Research summary
Dementia with Lewy Bodies (DLB) is the second most common form of dementia (following Alzheimer’s disease), accounting for 10-15% of cases. The symptoms of DLB include cognitive decline, loss of independence, visual hallucinations, sleep disturbance (e.g., acting out dreams), and movement problems such as difficulty walking. Other possible signs include unexplained confusion, mood changes, fainting, or frequent falls. Diagnosing DLB can be difficult because its symptoms overlap with other conditions like Alzheimer’s or Parkinson’s, and specialised diagnostic tests for DLB are not available in all settings.
Studies show DLB is frequently missed or misdiagnosed. In the UK, only one in three cases is identified correctly, and many patients are initially given other diagnoses. It often takes multiple hospital appointments and tests to reach the right diagnosis, causing delays in treatment. While there is no cure for DLB, some treatments can ease symptoms, while other medications, like antipsychotics, should be avoided as they can worsen the condition. An early and accurate diagnosis can minimise patients’ and caregivers’ emotional distress, while also helping them prepare for the challenges ahead and manage symptoms better.
Healthcare professionals face several obstacles in diagnosing DLB, including limited awareness, difficulty spotting key symptoms for patients who attend appointments without a caregiver, and challenges distinguishing it from other conditions. To improve diagnosis and patient care, this project aims to investigate the factors contributing to these diagnostic delays and errors in specialised centres. The findings of the research will be used to avoid diagnostic delays and misdiagnosis of DLB in the future.
REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
25/NE/0050
Date of REC Opinion
28 Mar 2025
REC opinion
Favourable Opinion