A follow-up study of change in quality of life among persons with dementia residing in a long-term care facility

Background: Dementia is a major public health problem. Increased attention is being paid to the quality of life (QOL) of people with this chronic disease. There have been no longitudinal studies of QOL change in dementia. Method Longitudinal study of a cohort of 47 persons with dementia residing in a long‐term care facility. The QOL of participants was assessed at baseline using the Alzheimer's Disease Related Quality of Life (ADRQL) scale. At this time participants were also assessed on a series of other clinical measures. QOL was reassessed on the ADRQL scores two years later. Results There was small but significant mean decline in ADRQL over the two‐year study interval. However, for 49% of participants, ADRQL scores did not change or improved. Small but significant declines occurred in all ADRQL domains, with the exception of ‘feelings and mood’. Of the baseline variables assessed, only a lower baseline ADRQL score was associated with greater decline in ADRQL score at follow‐up. There was no association between sociodemographic variables, baseline ratings of dementia severity (MMSE), ADL impairment, behavioral impairment, and depression, or MMSE change during follow‐up and ADRQL decline. Conclusions Among long‐term care residents with dementia there is a small decline in QOL ratings over two years. However, for nearly half, QOL ratings stay the same or improve. The ADRQL is a sensitive measure of change in QOL and is appropriate for use as an outcome measure in intervention studies. The predictors of QOL change are complex and require further study. Copyright © 2003 John Wiley & Sons, Ltd.