N ational Hospice and Palliative Care Organization’s Palliative Care Resource Series

1. National Hospice and Palliative Care Organization’sPalliative 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 • 1in 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 • 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

7. DIAGNOSIS • 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. DIAGNOSIS • MMSE Scores *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 topain • 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