Health-related quality-of-life and service utilization in Alzheimer's disease: A cross-sectional study

The objective of this study was to explore the relationships between the severity of Alzheimer's disease (AD) in different care settings, health-related quality-of-life (HQoL), service utilization, and caregiver time and burden. Data were from a 1996 cross-sectional study of 679 AD patient/caregiver pairs. Patients met NINCDS/ADRDA criteria for probable Alzheimer's, were staged with the Clinical Dementia Rating Scale, and recruited from managed care plans, academic medical centers, nursing homes, and assisted living facilities. Patient data included: demographics, MMSE, co-morbidities, health-related quality-of-life, health status, and service utilization. Family caregiver data included demographics, caregiver time and burden. Significant findings included: patient HQoL scores were better for community patients, but worsened with disease severity; regardless of setting, patient SF-36 scores showed worse physical functioning and better mental health scores as disease severity increased; inpatient stays and ER visits were rare regardless of severity or setting, and for community patients, day care and in-home services use increased with AD severity. Family caregivers spent 18 hours per month on ADLs and 32 hours on IADLs. Hours increased for community patients and those with greater disease severity. Caregiver burden levels were higher for those serving community patients and increased with disease severity. Burden was lowest for mild and moderate patients in assisted living. Greater patient AD severity was related to increased morbidity, poorer health status, lower health-related quality-of-life, greater family caregiver time and burden, and greater service use regardless of setting. Findings reinforce the need for an AD continuum of care.