Sources of Stress for Family Members of Nursing Home Residents With Advanced Dementia

The sources of stress for families of nursing home (NH) residents with advanced dementia have not been well described. Semistructured interviews were conducted with 16 family members previously enrolled in the Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life study, a prospective cohort of 323 NH residents with advanced dementia and their family members. Questions were asked pertaining to the experience of having a family member in the NH, communication with health-care professionals, surrogate decision making, emotional distress, and recommendations for improvement in care. Transcripts were analyzed using the constant comparative method. The majority of the participants were women (63%), children of the resident (94%), and white (94%). The average age was 62 years. Four themes emerged: (1) inadequate resident personal care, resulting in family member vigilance and participation in care; (2) stress at the time of NH admission; (3) lack of communication with NH physicians; and (4) challenges of surrogate decision making, including the need for education to support advance care planning and end-of-life decisions. Our results support the provision of emotional support to families upon resident admission, education regarding prognosis to guide decision making, improved resident care, and greater communication with health care professionals.