1. National Hospice and Palliative Care Organization’s Palliative Care Resource Series
PALLIATIVE CARE FOR DEMENTIA PATIENTS: PRACTICAL TIPS FOR HOME BASED PROGRAMS
Parag Bharadwaj, MD, FAAHPM
Anjali Chandra, MD
Gretchen Fitzgerald, CRNP, ACHPN
Katherine Ward, MD

2. INTRODUCTION 1 in 3 seniors die of dementia
In 2015, 5.3 million Americans have Alzheimer’s dementia
Expected to triple by 2050
Alzheimer’s disease is the 6th leading cause of death

3. INTRODUCTION Alzheimer’s dementia is the most common type of dementia
Vascular Dementia
Frontotemporal Dementia
Lewy Body Dementia

4. OVERVIEW Dementia Palliative Care in Dementia Patients at Home
Definition and Prevalence
Pathophysiology
Diagnosis
Clinical Features
Disease Management
Palliative Care in Dementia Patients at Home

5. DEFINITION AND PREVALENCE OF DEMENTIA
A syndrome involving decline in:
Memory
Thinking
Behavior
Ability to perform daily activities
Not commonly seen in persons below the age of 60, its prevalence is 30-50% by age 85

6. RELEVANT PATHOPHYSIOLOGY
Type of Dementia
Distinguishing Feature
Important Considerations
Alzheimer’s Dementia
Slow onset
Increased prevalence with aging
Vascular Dementia
Usually associated with neurological deficits
Closely associated with cardiovascular disease
Frontotemporal Dementia
Changes in personality typically marked by disinhibition
Common cause of dementia in younger patients
Lewy Body Dementia
Features overlap with Parkinson’s disease
Hallucinations are common
Haloperidol and chlorpromazine to be avoided

7. Dementia is a diagnosis of exclusion
Exclude potentially treatable conditions
Exclude the use of medications causing symptoms of dementia
Forgetfulness, disorientation and change in behaviors present
Mental status tests, most commonly the mini-mental state exam (MMSE)

8. Likely Association with Severity of Dementia
DIAGNOSIS
MMSE Scores
SCORE
Likely Association with Severity of Dementia
24-30
Normal
20-23
Mild cognitive impairment*
10-19
Moderate cognitive impairment
<10
Severe cognitive impairment
*Not all patients progress to have dementia
These scores can vary by age and education. Reference table should be used.

9. CLINICAL FEATURES
The Functional Assessment Staging of Alzheimer’s Disease (FAST)
Collected from the patient corroborated with a caregiver or family member

10. DISEASE MANAGEMENT Pharmacological Interventions
Medications targeted at slowing down the disease process have moderate effects at best
Cholinesterase inhibitors and memantine
Antipsychotic medications often ineffective

11. DISEASE MANAGEMENT Non-Pharmacological Interventions
Cognitive/emotion-orientation interventions
Sensory stimulation
Behavioral management techniques
Exercise therapy

12. DISEASE MANAGEMENT Pain Difficult to assess
Under recognized and undertreated
A trial of pain medication is first step to treating agitation
Drugs of questionable benefit should be discontinued in advanced dementia

13. PALLIATIVE CARE IN DEMENTIA PATIENTS AT HOME
Functional status declines steadily until it reaches a poor and dependent condition
Less agitation in their home environment and familiar surroundings although burdensome for caregivers

14. PALLIATIVE CARE IN DEMENTIA PATIENTS AT HOME
Education and guidance to caregivers:
Decreases caregiver burden
Increases patient’s quality of life
Avoids inappropriate admissions to the hospital

15. PALLIATIVE CARE IN DEMENTIA PATIENTS AT HOME
Intensive planning and care coordination between all involved medical specialties, family, caregivers, psychosocial supports
Disease trajectory and advance care planning early in disease

16. CLINICAL: PERTINENT AREAS OF SPECIAL FOCUS
Vital Signs, with special attention to pain
Physical Exam
Explain your actions, provide reassuring touch, and approach in a calm manner
Utilize family members during the exam to offer reassurance or distract the patient

17. CLINICAL: PERTINENT AREAS OF SPECIAL FOCUS
Functional Status (use one tool consistently such as the Palliative Performance Scale)
Sleep pattern
Skin integrity
Malnutrition
Incontinence
Falls

18. CLINICAL: PERTINENT AREAS OF SPECIAL FOCUS
Screening for Symptoms (use one tool consistently)
Edmonton Symptom Assessment Scale (ESAS)
MMSE or Saint Louis University Mental Status (SLUMS) for monitoring progression of memory loss
RUDAS can be the best scale for patients with little or no education or patients from a different ethnic or cultural background

19. CLINICAL: PERTINENT AREAS OF SPECIAL FOCUS
Medication Reconciliation
Benefits/burdens of each medication
Dispensed with patient/caregiver
Interview family members and caregivers to determine a baseline functional level and patient’s unique patterns

20. ADDITIONAL NEEDS ASSESSMENT: PERTINENT AREAS OF SPECIAL FOCUS
Emotional and Financial Support Screening
Spiritual Needs Screening
Home Safety Evaluation
Caregiver Screening

21. PATIENT GOALS: PERTINENT AREAS OF SPECIAL FOCUS
Care plan and patient goals reviewed frequently
Advance directive/ Physician Orders for Life Sustaining Treatment (POLST)
Documents should be readily available to patient, caregiver and paramedics (if called)

22. PATIENT GOALS: PERTINENT AREAS OF SPECIAL FOCUS
Nutrition and Hydration
Skillful discussions and decision making
Assistance with feeding orally is preferred approach
PEG tubes are of no benefit in preventing aspiration in patients with advanced dementia
can lead to the increased use of chemical and physical restraints

23. PATIENT GOALS: PERTINENT AREAS OF SPECIAL FOCUS
Depending on the clinical status, treatment options and goals should be readdressed on a regular basis
Use Functional Assessment Scale (FAST) scale to help determine prognosis and hospice eligibility

24. REVIEW AND EDUCATION: PERTINENT AREAS OF SPECIAL FOCUS
Changes in the treatment plan given to the patient and caregiver in writing and reviewed with them
Educate caregivers - reduce caregiver stress and optimize patient’s quality of life
Communicate with the primary physician/geriatrics during every visit and review plan of care

25. OPERATIONAL Scope of practice of each member of the team
Team functions as one unit with team members being able to rely on each other
Routine Interdisciplinary Team (IDT) meetings are essential
Role delineation is vital
Strong relationship with geriatrics and primary care is essential

26. OPERATIONAL
A working relationship with the family/caregivers is critical for success
Care of the family/caregiver is part of caring for the patient
Operational policies are required to guide caregivers in emergencies
Quality data should be collected and reviewed routinely

27. OPERATIONAL Expected Outcomes Improved continuity and quality of care
Decrease in ER visits and inappropriate hospitalizations
Increased adherence to patient goals
Improved patient and provider satisfaction

28. SUMMARY: LESSONS LEARNED AND BEST PRACTICES
A well-coordinated team
Frequent team meetings
Each home setting is unique
Focus should be on keeping the patient comfortable and meeting patient/family goals
Proactive plans are vital to avoid crises

29. SUMMARY: LESSONS LEARNED AND BEST PRACTICES
Active listening offers comfort and provides insight
Efficiencies are obtained through having an adequate number of support staff trained in palliative care to work with the palliative care provider(s)
Relationships develop in a different way when in the home; resiliency and self-care must be part of this work