What are the key topics to cover in a palliative care session for caregivers of patients with Dementia (Dementia), to enhance their understanding of their role in providing palliative care?

From the Guidelines

When providing a session on palliative care to caregivers of dementia patients, focus on pain assessment and management, symptom control, advance care planning, communication strategies, caregiver self-care, and end-of-life considerations, as recommended by the most recent and highest quality study 1.

Key Topics to Cover

• Pain assessment and management: teach caregivers to recognize non-verbal pain cues like facial grimacing, agitation, or changes in behavior, as dementia patients often cannot verbalize discomfort, and use tools for nonverbal pain assessment in PLWD, such as the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC), the Pain Assessment in Advanced Dementia (PAINAD) scale, and the Abbey Pain Scale 1.
• Symptom management: address issues like agitation, sleep disturbances, and appetite changes, emphasizing non-pharmacological approaches first, and consider the use of medications like acetaminophen (500-1000mg every 6 hours, not exceeding 4000mg daily) for mild pain.
• Advance care planning: guide caregivers through discussions to document the patient's wishes while they can still participate, and review decision-making capacity and related proxy powers, as well as verify advance directives and carers' legal proxy decision-making powers 1.
• Communication strategies: teach effective communication techniques such as simple language, maintaining eye contact, and using visual cues, and provide detailed guidance on self-management tasks, supported by leaflets with pictures and online videos 1.
• Caregiver self-care: include practical advice on preventing caregiver burnout through respite care, support groups, and self-care practices, and provide access to additional supports including spiritual care, grief counseling, and mental health professionals 1.
• End-of-life considerations: prepare caregivers for end-of-life transitions by discussing hospice services, comfort measures, and emotional preparation, and consider the appropriateness of life-sustaining measures, including mechanical ventilation, enteral/intravenous feeding, and intravenous fluids 1.

Implementation Strategies

• Regularly assess pain and use tools for nonverbal pain assessment in PLWD 1.
• Provide detailed guidance on self-management tasks, supported by leaflets with pictures and online videos, and offer hands-on practice of self-management tasks under supervision 1.
• Ensure community-based support with self-management tasks, such as home nursing visits, and provide access to additional supports including spiritual care, grief counseling, and mental health professionals 1.
• Document and reassess regularly palliative care discussions with the healthcare team and substitute decision-maker, and consider the use of palliative care specialists, particularly for consultation about individuals with difficult-to-control symptoms, complex or conflicted end-of-life decision-making, or complex psycho-social family issues 1.

From the Research

Key Topics in Palliative Care for Dementia Caregivers

To enhance their understanding of their role in providing palliative care, the following key topics should be covered in a palliative care session for caregivers of patients with dementia:

• Patient-centered approach to treating symptoms and addressing patient needs to improve quality of life 2
• Management of problem behaviors and provision of support to caregivers for managing these behaviors 3
• Discussion of prognosis and goals of care, including completion of advance directives 4, 5
• Pain assessment and management, as well as management of other common symptoms at the end of life, such as delirium and dyspnea 4, 5
• Optimization of function and quality of life for patients with advanced dementia 4
• Importance of healthcare professionals' role in taking decisions and providing guidance to caregivers 6
• Need for correct sharing of knowledge and training of healthcare professionals in palliative care to inform caregivers and avoid false beliefs or resistance to palliative care 6

Caregiver Strain and Support

Caregivers of patients with dementia may experience various types of strain, including role, personal, and emotional strain 3. To address this, palliative care programs should:

• Provide adequate support to caregivers for managing problem behaviors
• Offer counseling to help caregivers cope with emotional reactions to cognitive and behavioral changes associated with dementia progression
• Facilitate communication with the healthcare team and broker access to community and other resources for assistance with functional limitations 3

Palliative Care Programs

Palliative care programs for patients with dementia should be designed to address the unique needs of this population, including:

• Integration of palliative care into primary care 3
• Provision of palliative care in long-term care settings 4
• Focus on comfort, quality of life, and family support 5