Quality of care of older people living with advanced dementia in the community in Israel.

Objective: To examine the quality of end-of-life (EOL) care of older people with advanced dementia (OPAD) living in the community.

Methods: Retrospective cohort study. Methods: The second largest preferred provider organization in Israel. Methods: Primary family caregivers of OPAD (N = 117; 52 bereaved caregivers, 65 still caring for OPAD). Methods: Primary outcome measures were quality-of-EOL-care scales regarding symptom management at the EOL with dementia (SM-EOLD) and comfort assessment in dying at the EOL with dementia (CAD-EOLD).

Results: Caregivers reported a mean symptom management score of 29 ± 9.8 points (range 0-45 points), indicating poor symptom management in the areas of pain, shortness of breath, fear, skin breakdown, and resistiveness to care. In a multiple regression model, less comorbidity, longer duration of dementia, greater caregiver education, and absence of caregiver depression predicted better SM-EOLD. The 52 bereaved caregivers reported a mean CAD-EOLD score of 31.3 ± 6.7 points (range 14-42 points), indicating poor comfort around dying, especially difficulty swallowing and discomfort.

Conclusions: Because of the high rates of suffering, there is a need to address the complexity and severity of symptoms and problems faced by OPAD in the community and their caregivers. The priorities should include education of healthcare providers on palliative care, focusing especially on symptom-management needs of OPAD and comfort around dying.