Strain experienced by caregivers of dementia patients receiving palliative care: findings from the Palliative Excellence in Alzheimer Care Efforts (PEACE) Program

Abstract

Background: Programs that provide palliative care to individuals with dementia, which is a progressive terminal illness, are likely to encounter different issues (e.g., management of problem behaviors, caregiver strain extending over years) from those typically addressed by hospice programs. Little research is available on palliative care for individuals with dementia who live in the community.

Objective: This study examines predictors of types of strain experienced by caregivers of community-dwelling patients with dementia enrolled in a unique demonstration program titled Palliative Excellence in Alzheimer Care Efforts (PEACE), which moved palliative care "upstream," integrating palliative care into the primary care of patients with dementia.

Design: Data were collected through structured, face-to-face interviews with 150 community-dwelling, predominantly African American patient-caregiver dyads who were enrolled in the PEACE program.

Measurements: Established measures, including the Caregiver Strain Index, the Revised Memory and Behavior Problems Checklist, and the Katz Index of Activities of Daily Living, were used in addition to other measures assessing caregiver, patient, and situational characteristics.

Results: Factor analysis of the Caregiver Strain Index revealed three dimensions of strain (role, personal, and emotional) related to caregiving. Using a stress process model, regression analyses examined stressors and resources related to patient, caregiver, and support system characteristics in predicting these three dimensions of strain among caregivers. Patient problem behaviors predicted all types of caregiver strain. Perceived lack of support from the health care team predicted personal and emotional strain, whereas higher income, surprisingly, predicted role strain. Patient functional limitations predicted personal and role strain.

Conclusions: Findings suggest that effective palliative care programs for patients with dementia need to understand and address the various sources and types of caregiver strain; provide adequate support to caregivers for the management of problem behaviors; provide counseling to help cope with the emotional reactions to the cognitive and behavioral changes associated with dementia progression; facilitate communication with the health care team; and broker access to community and other resources for assistance with functional limitations. Further research examining changes in strain over time will provide useful insights on the delivery of care and services for patients with dementia and their families in a palliative care framework.