Background: Dementia is a terminal illness making the palliative and hospice approach to care appropriate for older people with advanced dementia.
Objective: To examine clinical and health services outcomes of a quality improvement pilot project to provide home hospice care for older people with advanced dementia.
Study design: Twenty older people with advanced dementia being treated in the Maccabi Healthcare Services homecare program, received home hospice care as an extension of their usual care for 6-7 months (or until they died) from a multidisciplinary team who were available 24/7. Family members were interviewed using validated questionnaires about symptom management, satisfaction with care, and caregiver burden. Hospitalizations prevented and medications discontinued, were determined by medical record review and team consensus.
Findings: The findings are based on 112 months of care with an average of 5.6 (SD 1.6) months per participant. The participants were on average 83.5 (SD 8.6) years old, 70% women, in homecare for 2.8 (SD 2.0) years, had dementia for 5.6 (SD 3.6) years with multiple comorbidities, and had been hospitalized for an average of 14.0 (SD 18.1) days in the year prior to the project. Four patients were fed via artificial nutrition. During the pilot project, 4 patients died, 2 patients withdrew, 1 patient was transferred to a nursing home and 13 returned to their usual homecare program. The home hospice program lead to significant (p < 0.001)improvement in: symptom management (score of 33.8 on admission on the Volicer symptom management scale increased to 38.3 on discharge), in satisfaction with care (27.5 to 35.3,), and a significant decline in caregiver burden (12.1 to 1.4 on the Zarit Burden index). There were five hospitalizations, and 33 hospitalizations prevented, and an average of 2.1(SD 1.4) medications discontinued per participant. Family members reported that the professionalism and 24/7 availability of the staff provided the added value of the program.
Conclusions: This pilot quality improvement project suggests that home hospice care for older people with advanced dementia can improve symptom management and caregiver satisfaction, while decreasing caregiver burden, preventing hospitalizations and discontinuing unnecessary medications. Identifying older people with advanced dementia with a 6 month prognosis remains a major challenge.
Keywords: Advanced dementia; Homecare; Hospice care; Palliative care.