What are the non-pharmacological treatment recommendations for dementia patients in palliative care?

Non-Pharmacological Treatment Recommendations for Dementia Patients in Palliative Care

For dementia patients in palliative care, prioritize reducing social isolation through meaningful activities, maintaining family connections, addressing spiritual needs, and implementing comfort-focused interventions while avoiding unnecessary medical procedures. 1, 2

Core Principles of Non-Medication Management

Maintaining quality of life and optimizing comfort are the primary goals of care for people with moderate to severe dementia. 3 The palliative approach should focus on physical, psychosocial, and spiritual needs throughout disease progression rather than life-prolonging interventions. 1

Combating Social Isolation and Loneliness

Social isolation significantly increases mortality risk and can worsen behavioral disturbances such as agitation and apathy in dementia patients. 3 Actively reducing social isolation is essential to prevent deterioration:

• Encourage families and friends to drop off letters, drawings, or other packages 3
• Facilitate participation in everyday activities such as listening to music or audiobooks 3
• Promote individual singing, walking outside, and exercises (maintaining appropriate distance when needed) 3
• Arrange regular check-ins by family members to maintain social support 3
• Maintain small group activities when possible, including interactive games via overhead speakers and staggered mealtimes 3

Technology-Based Interventions

Use tablets or smartphones to facilitate online social engagement with relatives, though recognize this requires additional explanation and support and may not suit everyone. 3 Consider advanced technology such as Virtual Reality to offer isolated patients opportunities to meet family in simulated trusted environments or visit special places like music concerts or nature settings. 3

Meaningful Activities and Environmental Modifications

Implement sensory stimulation programs specifically tailored for advanced dementia, such as Namaste Care, which requires neither major expenditure nor increased staffing. 2, 4 This approach provides care in a pleasant environment with constant caregiver presence, maintaining quality of life even when patients cannot participate in complex activities. 4

Create specific strategies that:

• Simplify tasks and provide meaningful activities 5
• Establish predictable routines 5
• Consider environmental factors and sensory impairments 5

Spiritual and Emotional Care

During advance care planning conversations, pay attention to personal values and desired rituals (including funeral or memorial plans) to enable appropriate courses of action. 3 Connect patients and families to resources supporting spiritual needs and post-death planning through telehealth services. 3

Consider calling in a chaplain or spiritual caregiver to support patients at end of life, regardless of whether the patient is dying from a specific acute illness. 3 This is particularly essential during complex care situations. 3

Family Involvement and Support

When patients approach end of life, advocate for offering families the opportunity to say goodbye in person, even when visiting restrictions exist. 3 If in-person visits are impossible, use technology to enable connections between the dying person and family. 3

Involve families as much as possible when patients near end of life:

• Provide information every step of the way 3
• Ask for ideas on how to arrange a peaceful death tailored to the dying person 3
• Be mindful of rituals that enable proper goodbyes (either in person or at distance) 3

Recognize the significant burden on family caregivers and provide comprehensive resources, including support groups and respite care services. 2 Routine referral to the Alzheimer's Association, support groups, and community resources reduces caregiver stress, improves patient behavior, and defers institutionalization. 5

Avoiding Unnecessary Medical Interventions

Avoid unnecessary laboratory tests and invasive procedures, adopting a minimalist approach to medical interventions in advanced dementia. 2 This prevents discomfort and maintains dignity while focusing on comfort-focused goals. 1

Never hospitalize patients for acute events when treatment can be provided in the current care setting. 4 Hospitalization leads to functional deterioration even in cognitively intact elderly individuals, and treatment of conditions like lower respiratory infections is more effective in nursing homes than acute care settings. 4

Advance Care Planning as a Non-Pharmacological Intervention

Early and ongoing advance care planning is associated with decreased hospitalizations, increased concordance between care received and prior wishes, and improved comfort at end of life. 1 Document the patient's previously expressed values and wishes, family understanding of disease progression, and decisions about appropriateness of hospitalization for acute events. 1

Begin discussions about advance care planning before crisis situations arise, including preferences regarding resuscitation, antibiotics for infections, tube feeding, and hospice care. 5

Common Pitfalls to Avoid

Do not use tube feeding in individuals with advanced progressive dementia, as it does not promote quality of life, dignity, or comfort. 4 Tube feeding deprives individuals of contact with caregivers during hand feeding, enjoyment of food taste, and often requires restraints that decrease dignity and comfort. 4

Avoid the increased risk of physical restraints and inadequate psychotropic medications to manage isolation-related behaviors. 3 Instead, use non-pharmacological treatments such as distraction, engagement in activities, and environmental modifications. 3

Never assume families understand that behavioral symptoms are disease-related rather than intentional, and explicitly state this understanding. 5 Reframe the family's understanding to reduce blame and caregiver distress. 5

Monitoring for Terminal Phase

Identify when death is imminent by recognizing three or more of the following symptoms: 3

• Rapid day-to-day irreversible deterioration
• Completely bedbound requiring frequent interventions
• Becoming less conscious with lapses into unconsciousness
• Unable to swallow
• Diminished or no urine secretion
• Profound weakness
• Changing breathing patterns or gurgling/rattly breathing
• Changing body temperature (hot and clammy, or cold)
• Pale or mottled skin

In the terminal phase, talk to the person and family and address the person's comfort, implementing rituals that enable peaceful death. 3