Objective: Using Lawton's model, the central purpose of this longitudinal study was to examine predictors of quality of life (QoL) outcomes in persons in the early to early-middle stages of irreversible dementia.
Design: A longitudinal, prospective design was utilized to examine relationships among caregiver factors and QoL outcomes of care recipients with irreversible dementia over an 18-month period. Initial data collection occurred within the first year after the care recipient's dementia diagnosis.
Population, Sample, Setting: The study was conducted over a 2-state area with caregivers and care recipients being recruited from 3 large diagnostic centers serving a major portion of their respective states. From an initial sample of 96 caregiver/care recipient pairs, 73 (N=146) remained at the 18-month data collection point. The caregivers' mean age was 63.7, younger than care recipients (x=77.3 years). Most caregivers were female (74%) and most were spouses (56%). The majority of care recipients were female (57%) with an averge of 13.4 years of education. The majority of the sample was Caucasian (95%), reflecting the inclusion of many rural-dwelling persons (55%).
Concepts Studied: Caregiver predictor variables included demographic data (age, gender, education, relationship to care recipient), role stress, quality of the relationship with the care recipient, and facilitation of social contacts and activities for the care recipient. Care recipient QoL outcomes included psychological well being (including depression), physical impairment, functional ability, productive behaviors, and perceived personal control.
Methods: Persons with dementia and their primary caregiver were interviewed in the home setting at baseline and every 6 months over an 18 month period, for a total of 4 data collection points. Quantitative instruments were augmented by in-depth interviews with both the caregiver and care recipient, with the care recipient interview including a life history review.
Findings: Changes in care recipient outcomes from baseline to 18 months included significant declines in mental status, productive behaviors, and functional ability, with significant improvement in depression. Controlling for 12-month mental ability, caregiver factors at 12-months predicting care recipient QoL outcomes at 18 months include psychological well-being being predicted by the quality of the relationship with the caregiver and activity participation. Depression was predicted by activity participation as well. Care recipient functional ability was predicted by activity participation and caregiver role stress. Two of the three aspects of care recipient productive behaviors were predicted by caregiver factors, with quality of the relationship predicting problem solving and caregiver role stress and social contacts predicting care recipient social behaviors. All relationships were in the expected direction.
Conclusions: Lawton's QoL model was supported by this analysis with a total explained variance of 32% for three (psychological well being, productive behaviors, and functional ability) of the five (physical impairment and perceived personal control not predicted to) components of care recipient QoL outcomes.
Implications: Importantly, after controlling for disease related factors, caregiver factors predicted significantly to QoL outcomes in the care recipient. As some predictors, such as caregiver role stress and facilitation of activity participation, are amenable to intervention, these findings point to the relevance of significant external factors that may be modified, with the result of improving the care recipient's QoL in the early to early-middle stages of dementia.
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