What is the appropriate care for a patient with end-stage dementia (ESD) who is nearing death?

From the Guidelines

To care for someone with end-stage dementia who may be dying, prioritize their comfort and dignity. Ensure they receive adequate pain management, typically with medications such as morphine (starting at 2.5-5mg every 4 hours as needed) or acetaminophen (650-1000mg every 4-6 hours as needed) 1. Manage any breathing difficulties with oxygen therapy as needed, and consider using medications like lorazepam (0.5-1mg every 4-6 hours as needed) or haloperidol (0.5-1mg every 4-6 hours as needed) to alleviate agitation or anxiety.

Key Considerations

• Maintain good oral hygiene, and provide small, frequent meals and fluids to prevent dehydration.
• Consider using a feeding tube if the person is unable to eat or drink by mouth, but be aware that artificial nutrition and hydration are medical interventions and not basic provisions 1.
• Keep the environment calm and peaceful, with minimal noise and stimulation.
• Provide emotional support and reassurance to the person and their family, and consider involving hospice care or palliative care services for additional support 1.

Care Planning

• Monitor the person's condition closely, and adjust their care plan as needed to ensure their comfort and dignity.
• Focus on providing comfort measures rather than curative treatments, and prioritize the person's quality of life 1.
• Consider advance care planning to discuss the person's wishes and preferences for end-of-life care, and to prevent unwanted life-sustaining treatments 1.
• Involve nursing staff, families, and other healthcare professionals in care planning and decision-making to ensure a person-centered approach 1.

From the Research

Appropriate Care for End-Stage Dementia Patients

• Care for patients with end-stage dementia (ESD) who are nearing death should focus on comfort, dignity, and quality of life 2
• Barriers to optimal end-of-life care in the final stages of dementia can be addressed through improved and earlier advanced care planning for persons with dementia and their caregivers 2
• Palliative and hospice care can play a crucial role in improving dementia end-of-life care, with a focus on avoiding overly aggressive, burdensome, or futile treatment 3

Patient and Caregiver Preferences

• Families of patients with dementia prefer continuity in care and living arrangements, with a focus on comfort and support in the terminal phase 3
• Patients with dementia and their caregivers value compassionate care, decisions made by healthcare professionals, and information availability when making decisions 4
• Bereaved caregivers recommend that healthcare providers discuss end-of-life decisions with them during earlier stages of the disease, and that care continuity and coordination be improved 5

Interventions to Improve End-of-Life Care

• Staff training programs can increase the number and implementation of advanced care wishes, leading to improved end-of-life care for people with dementia in care homes 6
• Interventions that focus on increasing advance care wishes documentation and implementation, and improving staff confidence and family satisfaction, can lead to reduced hospital deaths and improved quality of care 6
• Mobile teams that specialize in palliative care in dementia and support professional and family caregivers can provide continuity of care, relationships, and specialist expertise 3