Abstract

Improving the diagnosis and management of Lewy body dementia: the DIAMOND-Lewy research programme including pilot cluster RCT

Highlights

  • Lewy body dementia (LBD) is a term used to describe two closely related conditions: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD)

  • Work package 1 repeated – following introduction of the assessment toolkit, we found that 9.7% of dementia cases had dementia with Lewy bodies, but Parkinson’s disease dementia rates were similar (8.2%) to baseline

  • The systematic reviews indicated a limited evidence base to inform the content of the management toolkit, highlighted the lack of non-pharmacological studies and indicated a clear need for trials to be undertaken in dementia with Lewy bodies and Parkinson’s disease dementia

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Summary

Introduction

Lewy body dementia (LBD) is a term used to describe two closely related conditions: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). DIAMOND-Lewy (Improving the DIAgnosis and Management of Neurodegenerative Dementia of Lewy body type) was a comprehensive, multidisciplinary 5-year programme of work seeking to investigate and implement ways to improve both the diagnosis and management of LBD (i.e. both DLB and PDD) within the NHS We achieved this through a number of interlinked work packages (WPs), with a very strong patient and public involvement (PPI) core running throughout the programme. Lewy body dementia is the second most common cause of neurodegenerative dementia in later life, there remains a large discrepancy between rates from clinical studies and those based on autopsy (4–7% and 15–20% for dementia with Lewy bodies, respectively) Both dementia with Lewy bodies and Parkinson’s disease dementia present with a range of clinical features, including cognitive impairment, motor symptoms, autonomic symptoms, sleep problems and neuropsychiatric features.

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