Abstract
BackgroundThe DEmEntia with LEwy bOdies Project (DEvELOP) aims to phenotype patients with dementia with Lewy bodies (DLB) and study the symptoms and biomarkers over time. Here, we describe the design and baseline results of DEvELOP. We investigated the associations between core and suggestive DLB symptoms and different aspects of disease burden, i.e., instrumental activities of daily living (IADL) functioning, quality of life (QoL), and caregiver burden.MethodsWe included 100 DLB patients (69 ± 6 years, 10%F, MMSE 25 ± 3) in the prospective DEvELOP cohort. Patients underwent extensive assessment including MRI, EEG/MEG, 123FP-CIT SPECT, and CSF and blood collection, with annual follow-up. Core (hallucinations, parkinsonism, fluctuations, RBD) and suggestive (autonomous dysfunction, neuropsychiatric symptoms) symptoms were assessed using standardized questionnaires. We used multivariate regression analyses, adjusted for age, sex, and MMSE, to evaluate how symptoms related to the Functional Activities Questionnaire, QoL-AD questionnaire, and Zarit Caregiver Burden Interview.ResultsIn our cohort, RBD was the most frequently reported core feature (75%), while visual hallucinations were least frequently reported (39%) and caused minimal distress. Suggestive clinical features were commonly present, of which orthostatic hypotension was most frequently reported (64%). Ninety-five percent of patients showed EEG/MEG abnormalities, 88% of 123FP-CIT SPECT scans were abnormal, and 53% had a CSF Alzheimer’s disease profile. Presence of fluctuations, lower MMSE, parkinsonism, and apathy were associated with higher IADL dependency. Depression, constipation, and lower IADL were associated with lower QoL-AD. Apathy and higher IADL dependency predisposed for higher caregiver burden.ConclusionBaseline data of our prospective DLB cohort show clinically relevant associations between symptomatology and disease burden. Cognitive and motor symptoms are related to IADL functioning, while negative neuropsychiatric symptoms and functional dependency are important determinants of QoL and caregiver burden. Follow-up is currently ongoing to address specific gaps in DLB research.
Highlights
Dementia with Lewy bodies (DLB) is the second most common form of neurodegenerative dementia in the elderly after Alzheimer’s disease (AD), affecting 4–10% of all dementia cases [1, 2]
A positive family history for dementia was present in n = 39 (39%) and for PD in n = 15 (15%) patients. 123FP-CIT SPECT supported the diagnosis in n = 70 (88%) of patients; n = 72 (96%) had an abnormal EEG/MEG, of which n = 60 (80%) a severity score of 3
Associations between clinical symptoms and measures of disease burden We evaluated the associations between core and suggestive symptoms and Functional Activities Questionnaire (FAQ) (IADL), quality of life (QoL)-AD (QoL), and caregiver burden (ZBI) (Table 3)
Summary
Dementia with Lewy bodies (DLB) is the second most common form of neurodegenerative dementia in the elderly after Alzheimer’s disease (AD), affecting 4–10% of all dementia cases [1, 2]. Disease burden in DLB is high, with lower quality of life (QoL) [4, 5], higher instrumental activities of daily living (IADL) dependency [6], and higher caregiver burden [7, 8] compared to AD. Which DLB characteristics and symptoms contribute to these measures of disease burden has not yet been fully elucidated. Understanding these contributions is relevant for the development of outcome measures for trials and treatment. We investigated the associations between core and suggestive DLB symptoms and different aspects of disease burden, i.e., instrumental activities of daily living (IADL) functioning, quality of life (QoL), and caregiver burden
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