Proxy-rated quality of life in Alzheimer's disease: a three-year longitudinal study

Abstract

QoL is a subjective concept and may not be influenced by the degree of cognitive dysfunction. Future studies should investigate the factors for individual variations in order to understand the nature of change of QoL in AD and the wide variation in QoL scores over time.

Quality of life in mild dementia: patterns of change in self and caregiver ratings over time

“…Functional deficits 7,14 and neuropsychiatric symptoms 5 are the factors most often cited in previous research as having a negative impact on caregiver ratings of PwD QoL. Conversely, our findings show that changes in caregiver ratings of PwD QoL are associated with different factors.…”

“…This association highlights the subjective nature of the concept of QoL and raises questions regarding the differences in the way PwD and caregivers perceive PwD QoL. 23 Vogel et al 14 emphasized that some people adapt to their situation with time, modifying their interpretation of subjective well-being and health accordingly, in a way that may not reflect the clinical progression of disease. Despite the presence of association between self and caregiver PwD QoL ratings, the decrease in caregiver ratings of PwD QoL was more significant than the changes in PwD self-rated QoL.…”

“…Our results are in line with those of other studies in which PwD self-ratings of QoL did not change substantially during follow-up, although caregiver ratings were more likely to decline. 1,7,14,19 Our second objective was to identify the factors associated with any changes in QoL ratings. Measures of cognitive and functional impairment (MMSE and PFAQ) declined over 1 year, indicating typical dementia progression in this PwD group.…”

“…Caregivers witnessing the losses experienced by PwD may interpret these losses as a source of distress. 6,11 Other more recent studies have sought to explore predictors for the discrepancies between self-reported and caregiver perceptions of PwD QoL, incorporating associations with PwD characteristics such as mood, 12,13 neuropsychiatric symptoms, 14 and unawareness of impairment and behavioral disturbances 15 as well as caregiver factors such as perceived burden of care. The nature of the PwD-caregiver relationship has also been considered.…”

Preserving Cognition, Quality of Life, Physical Health and Functional Ability in Alzheimer's Disease: The Effect of Physical Exercise (ADEX Trial): Rationale and Design

“…This sample size also makes it possible to detect clinically relevant differences in some important secondary outcomes: 126 subjects must be included (α = %, β = 20%) to identify an MIREDIF set to 6 points (equals 10%) in the EQ-5D-5L index score completed by caregivers (typical average values in mild AD: 60-70) [60]. Further, 50 subjects must be included (α = 5%, β = 20%) to find an MIREDIF of 5 ml/(kg∙min; equals 15%) in the VO 2 max measured with the Astrand cycle ergometer test [61].…”