Not gone and not forgotten: a spouse's experience of late-stage Alzheimer's disease.

1. Late-stage caregiving is different from earlier stages, is difficult, and requires an empathic response from staff. 2. Ethical decision-making, supportive care, and the inevitability of death are important late-stage caregiver topics. Staff should understand the concept of palliative care. 3. Current educational programs and family support groups should be assessed for attention to late-stage caregiver issues. Further research is needed on helping families prepare for and cope with late stage caregiving.