Abstract
OBJECTIVES: To examine quality of life (QOL) in nursing home (NH) residents with advanced dementia and identify correlates of QOL near the end of life. DESIGN: Cross-sectional data derived from NH records, interviews with residents' surrogate decision-makers, QOL ratings by NH caregivers, and assessment of residents' cognitive function. SETTING: Three NHs in Maryland. PARTICIPANTS: A cohort of NH residents with dementia (n=119) who were receiving hospice or palliative care or met hospice criteria for dementia and their surrogates. MEASUREMENTS: QOL based on the proxy-rated Alzheimer' Disease-Related Quality of Life (ADRQL) scale administered to NH staff and validated against a single-item surrogate-rated measure of QOL, the Severe Impairment Rating Scale, to measure cognitive function and dichotomous indicators of neuropsychiatric symptoms (behavior problems, mood disorders, psychosis, delusions). RESULTS: Total ADRQL scores, ranging from 12.4 to 95.1 out of 100, were normally distributed and positively correlated (P<.001) with surrogate-rated QOL. Multiple regression analysis of ADRQL scores showed that residents with higher cognitive function (P<.001, 95% confidence interval (CI)=0.97-1.65) and those receiving pain medication (P=.006, 95% CI=3.30-19.59) had higher QOL, whereas residents with behavior problems (P=.01, 95% CI=-11.60 to -1.30) had lower QOL. CONCLUSION: The ADRQL is a valid indicator of QOL in NH residents with advanced dementia. QOL in this population may be improved near the end of life using appropriate assessment and treatment of pain and effective management of behavior problems.