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Our #DIAMOND-Lewy paper on the Clinical diagnosis of #Lewy body dementia #DLB #PDD is now online at #BJPOpen @TheBJPsych https://www.cambridge.org/core/journals/bjpsych-open/article/clinical-diagnosis-of-lewy-body-dementia/90A3E4D7C82285B6682318A60F926607/core-reader
We believe it do be an important study in demonstrating what some of our patients have been telling us for years; that patients with DLB often initially receive different dementia subtype diagnoses, and that they have to wait months or years before their DLB is diagnosed.
We reviewed the medical notes of people with DLB and people with non-DLB dementia for information on their pathway to diagnosis.
Nearly half of people with DLB were assigned a different dementia subtype diagnosis (usually Alzheimer’s) before getting their DLB diagnosis. They waited a median of 1.2 years from their first appointment in secondary care to their DLB diagnosis (0.6 years for non-DLB dementia).
People with DLB in East Anglia had significantly more core symptoms than those in the NE. We believe this to represent a higher threshold for diagnosis in EA– it could mean that more cases are being missed. People with DLB in EA were less likely to have FP-CIT SPECT (“DaTscan”).
We also reviewed notes of people with PDD and Parkinson's disease (without dementia), from the same two regions.
We found that patients with PDD often had been documented as having impairment in functioning, cognition, or both, long before being given dementia diagnosis. We also found that many had been prescribed anti-dementia drugs despite not having been given a diagnosis.
We believe that some of our observations may explain why it DLB and PDD is under-recognised in clinical practice. We have published resources designed to help clinicians recognise Lewy body disorders here https://onlinelibrary.wiley.com/doi/full/10.1002/gps.4948
We’re very grateful to @NIHRresearch for funding, @NIHRNewcBRC @newcastlehosptials @CambridgeBRC @CUH_NHS @CPFT_NHS for supporting, @CNTWNHS sponsoring & to colleagues throughout participating organisations. Most of all thanks to our participants & caregivers for taking part!
