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This study examined change in patient and caregiver ratings of patient quality of life (QOL) over one year in individuals with dementia living in rural and remote settings. The sample was selected from non-institutionalized patients who were assessed at an interprofessional memory clinic. Measures of QOL, cognitive function, depression, and functional ability were completed by the patient. Caregivers completed measures of patient QOL and behavior, and their own burden and distress. At baseline (clinic day) 119 patients and family caregivers were assessed. Thirty-two families had complete data at clinic day and one-year follow-up. There was no significant change in either patient or caregiver-rated QOL over one year. Significant predictors of patient self-rated QOL were patient symptoms of depressed mood and functional ability at clinic day, and symptoms of depressed mood and clinic day QOL at one year. Significant predictors of caregiver-rated patient QOL were caregiver burden, patient functional ability, and symptom severity at clinic day, and caregiver burden at one year. Patient and caregiver ratings of patient QOL were moderately associated, but neither patients nor their caregivers reported a significant change in patient QOL. Changes in QOL over time remain a unique individual experience that cannot be entirely predicted by analytical models.

Quality of life in early dementia: Comparison of rural patient and caregiver ratings at baseline and one year