Trajectories and Determinants of Quality of Life in Dementia with Lewy Bodies and Alzheimer’s Disease

Abstract

Background: Quality of Life (QoL) is an important outcome measure in dementia, particularly in the context of interventions. Research investigating longitudinal QoL in dementia with Lewy bodies (DLB) is currently lacking. Objective: To investigate determinants and trajectories of QoL in DLB compared to Alzheimer's disease (AD) and controls. Methods: QoL was assessed annually in 138 individuals, using the EQ5D-utility-score (0-100) and the health-related Visual Analogue Scale (VAS, 0-100). Twenty-nine DLB patients (age 69 ± 6), 68 AD patients (age 70 ± 6), and 41 controls (age 70 ± 5) were selected from the Dutch Parelsnoer Institute-Neurodegenerative diseases and Amsterdam Dementia Cohort. We examined clinical work-up over time as determinants of QoL, including cognitive tests, neuropsychiatric inventory, Geriatric Depression Scale (GDS), and disability assessment of dementia (DAD). Results: Mixed models showed lower baseline VAS-scores in DLB compared to AD and controls (AD: ␤±SE =-7.6 ± 2.8, controls: ␤±SE =-7.9 ± 3.0, p < 0.05). An interaction between diagnosis and time since diagnosis indicated steeper decline on VAS-scores for AD patients compared to DLB patients (␤±SE = 2.9 ± 1.5, p < 0.1). EQ5D-utility-scores over time did not differ between groups. Higher GDS and lower DAD-scores were independently associated with lower QoL in dementia patients (GDS: VAS ␤±SE =-1.8 ± 0.3, EQ5D-utility ␤±SE =-3.7 ± 0.4; DAD: VAS = 0.1 ± 0.0, EQ5D-utility ␤±SE = 0.1 ± 0.1, p < 0.05). No associations between cognitive tests and QoL remained in the multivariate model. Conclusion: QoL is lower in DLB, while in AD QoL shows steeper decline as the disease advances. Our results indicate that non-cognitive symptoms, more than cognitive symptoms, are highly relevant as they impact QoL.

Prodromal Dementia With Lewy Bodies: Clinical Characterization and Predictors of Progression

“…38,39 Noncognitive symptoms have previously been related to higher caregiver burden, lower quality of life, and earlier nursing home admission in DLB. [39][40][41] Our results show that already in the MCI phase, noncognitive symptoms contribute to caregiver burden. This finding is important as noncognitive symptoms are potentially treatable.…”

Psychosocial Effects of Corona Measures on Patients With Dementia, Mild Cognitive Impairment and Subjective Cognitive Decline

“…Due to corona (measures), half of the symptomatic patients and caregivers reported an increase in psychological symptoms, including feelings of loneliness, anxiety, depression and uncertainty. This is reason for concern as psychological and neuropsychiatric symptoms are known to be strongly related to cognitive decline, caregiver burden and quality of life (21)(22)(23)(24). Also in cognitively normal patients, one third reported an increase in psychological symptoms.…”

Research priorities of caregivers and individuals with dementia with Lewy bodies: An interview study

“…There are no biomarkers for DLB and no treatments for DLB approved by the U.S. Food and Drug Administration. Caregiver burden in DLB is high [ 17 – 19 ] and quality of life is negatively affected by DLB [ 20 , 21 ].…”

“…Caregiver burden in DLB may be similar to PD dementia [ 16 ], but it is higher in DLB compared to AD dementia [ 17 – 19 ]. Quality of life is also worse in DLB compared to AD dementia [ 20 , 21 ]. Given these and other important differences between DLB and other dementias and parkinsonisms, prior publications reporting on research priorities in PD [ 22 , 23 ] and dementia in general [ 24 – 27 ] may not capture the priorities of individuals with DLB.…”