A longitudinal study on quality of life along the spectrum of Alzheimer’s disease

Abstract

Background Quality of life (QoL) is an important outcome from the perspective of patients and their caregivers, in both dementia and pre-dementia stages. Yet, little is known about the long-term changes in QoL over time. We aimed to compare the trajectories of QoL between amyloid-positive and amyloid-negative SCD or MCI patients and to evaluate QoL trajectories along the Alzheimer’s disease (AD) continuum of cognitively normal to dementia. Methods We included longitudinal data of 447 subjective cognitive decline (SCD), 276 mild cognitive impairment (MCI), and 417 AD dementia patients from the Amsterdam Dementia Cohort. We compared QoL trajectories (EQ-5D and visual analog scale (VAS)) between (1) amyloid-positive and amyloid-negative SCD or MCI patients and (2) amyloid-positive SCD, MCI, and dementia patients with linear mixed-effect models. The models were adjusted for age, sex, Charlson Comorbidity Index (CCI), education, and EQ-5D scale (3 or 5 level). Results In SCD, amyloid-positive participants had a higher VAS at baseline but showed a steeper decline over time in EQ-5D and VAS than amyloid-negative participants. Also, in MCI, amyloid-positive patients had higher QoL at baseline but subsequently showed a steeper decline in QoL over time compared to amyloid-negative patients. When we compared amyloid-positive patients along the Alzheimer continuum, we found no difference between SCD, MCI, or dementia in baseline QoL, but QoL decreased at a faster rate in the dementia stage compared with the of SCD and MCI stages. Conclusions QoL decreased at a faster rate over time in amyloid-positive SCD or MCI patients than amyloid-negative patients. QoL decreases over time along the entire AD continuum of SCD, MCI and dementia, with the strongest decrease in dementia patients. Knowledge of QoL trajectories is essential for the future evaluation of treatments in AD. Supplementary Information The online version contains supplementary material available at 10.1186/s13195-022-01075-8.

Predictors for quality of life in older adults: network analysis on cognitive and neuropsychiatric symptoms

“…Furthermore, the occurrence and severity of NPS increased as cognitive decline worsened, while the QoL decreased. These results are in line with previous research findings [ 78 , 79 ].…”

Assessing Quality of Life, Economic Burden, and Independence Across the Alzheimer’s Disease Continuum Using Patient-Caregiver Dyad Surveys

“…Moreover, unpaid caregivers may jeopardize their own financial security by diverting resources and time away from their own careers and financial well-being. Findings from prior investigations exploring the relationship between AD disease severity and QoL are inconsistent, as evident in the literature [44][45][46][47][48]. Of interest, a multicenter European prospective community-based cohort study of 616 patientcaregiver dyads did not find a significant change in self-reported QoL over time by AD severity for either patients or caregivers [49].…”

“…Another consideration is that discordance between clinician's assessments of AD severity and cognitive test-based assessments has been documented and may differ by clinician types [59], thus there may be some variability in MCI and AD severity classifications. We did not require AD biomarker testing, therefore it is possible that some patients in the MCI group had MCI due to causes other than AD; this may impact findings as there is data supporting that amyloid-positive MCI is associated with decreased QoL vs amyloid-negative MCI [45]. Additionally, the DEMQOL-Proxy was used for QoL assessments, and discrepancies between QoL ratings by patients with dementia and their proxies have been well documented, especially with increasing disease severity [60][61][62].…”

Potential Impact of Slowing Disease Progression in Early Symptomatic Alzheimer’s Disease on Patient Quality of Life, Caregiver Time, and Total Societal Costs: Estimates Based on Findings from GERAS-US Study

“…Patients with symptomatic AD progress from early stages (MCI or MILD AD) to the later stages gradually over a period of years and develop greater symptom severity and dependence on others for care with each stage [4,30]. At present, the focus of AD treatments is shifting from managing symptoms to targeted therapy aimed at slowing the progression of the disease [6].…”