Introduction of a Management Toolkit for Lewy Body Dementia: A Pilot Cluster‐Randomized Trial

Abstract

Background Lewy body dementia, comprising both dementia with Lewy bodies and Parkinson's disease dementia, is challenging to manage because of a complex symptom profile and lack of clear evidence‐based management guidelines. Objectives We assessed the feasibility of undertaking a cluster randomized study of the introduction of an evidence‐based management toolkit for Lewy body dementia, assessing the outcomes for patients and carers as secondary measures. Methods We randomized 23 memory/dementia, movement disorder, or nonspecialist secondary care services to the management toolkit or usual care. People with dementia with Lewy bodies or Parkinson's disease dementia underwent assessments of cognition, motor and neuropsychiatric symptoms, and global outcome at baseline and 3 and 6 months. Healthcare, personal and social care costs, and carer‐related outcomes of carer stress, depression, and anxiety were also examined. Results A total of 131 participants were recruited (target 120), for whom 6‐month data were available on 108 (83%). There was a benefit of being in the intervention arm for carers (reduced Zarit Burden Scale [P < 0.01], reduced depressive symptoms [P < 0.05]), who also reported less marked patient deterioration on the global outcome measure (P < 0.05). There were no significant differences in other outcomes or in costs between groups. Conclusions The introduction of an evidence‐based management toolkit for Lewy body dementia was feasible and associated with some benefits, especially for carers. © 2020 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society

Progression of Clinical Features in Lewy Body Dementia Can Be Detected Over 6 Months

“…Data from 127 subjects with Lewy body dementia (77 DLB, 50 PDD) were analysed from a cluster randomized trial (Diagnosis And Management Of Neurodegenerative Dementia, 'DIAMOND-Lewy' Study; ISRCTN11083027) 20 which was performed between 2016 and 2017 in 23 memory or movement disorder services across 8 main jurisdictions (trusts) of the United Kingdom National Health Service (NHS; 4 trusts in the North East and 4 trusts in East Anglia). All patients underwent clinical assessment and were diagnosed as having probable DLB or PDD according to current consensus criteria 2,3 .…”

“…Therefore, patients who could not be followed up after the baseline measurement (n=11) were excluded, leaving 116 participants (72 DLB, 44 PDD) for the final analysis (including 107 patients with data for all 3 timepoints, 7 patients with data at baseline and 3 months, and 2 patients with data at baseline and 6 months). Results of the trial with respect to the main intervention have recently been published 20 .…”

“…To address this gap, we sought to quantify the trajectory and magnitude of change of the key clinical features and symptom domains of cognitive impairment, motor parkinsonism, cognitive fluctuations, neuropsychiatric and sleep disturbances in a cohort of patients with PDD and DLB over a period of 6 months using commonly used clinical rating scales. We analysed data from a prospective multicentre non-pharmacological intervention trial 20 . The nature of the intervention, designed to encourage expected standards of care, made it ideal for assessing the natural progression of clinical features under the conditions of a clinical trial.…”

“…We analyzed data from a prospective multicenter nonpharmacologic intervention trial. 20 The nature of the intervention, designed to encourage expected standards of care, made it ideal for assessing the natural progression of clinical features under the conditions of a clinical trial.…”

Exploring the experiences of living with Lewy body dementia: An integrative review

“…It was identified that 78% of people with Lewy body dementias received a different diagnosis initially, usually Alzheimer's disease (Galvin et al, 2010a) and although rates vary in the wider literature, it is considered that approximately 50% are receiving a different or delayed diagnosis (Freer, 2017). The Lewy body Composite Risk Score (Galvin, 2015) and the Lewy body dementia assessment toolkit have been developed to help earlier identification of the disease (O'Brien et al, 2021). This provides specific screening questions to assess whether a patient has any of the core features of the condition (Galvin, 2015;Thomas et al, 2017Thomas et al, , 2018.…”