1. Dementia: A Terminal illness Hospice for Patients with Dementia Dr. Joette Greenstein Medical Director, Columbus

2. Objectives  Define dementia and the prevalence, pathology and trajectories  Identify patients with dementia who are appropriate for hospice care  Review the hospice care benefits for patients with dementia  Explain the Cost of Dementia on the healthcare system  Explain How Hospice can help patients, families, physicians, and caregivers 11/30/20152

3. Dementia Definition  Dementia isn’t a specific disease  It describes a group of symptoms affecting intellectual and social abilities severe enough to interfere with daily functioning  Variety of diseases that result in the death of neurons  91% of the time, it is an irreversible disorder that is progressive and Terminal 11/30/20153

4. Dementia  The most common form of dementia is Alzheimer’s  60-80% of cases  Most elderly with dementia have Mixed form of Alzheimer’s and another form  Many of these signs apply to other dementias  Common Symptom cluster at end of life  Different dementias have different trajectories, symptoms, and treatments  Prognosis is related to function and other chronic conditions 11/30/20154

5. Differential Diagnosis of Dementia 5%10%65%5%7%8% Dementia w/ Lewy bodies Parkinson’s disease Diffuse Lewy body disease Lewy body variant of AD Vascular dementias and AD Other dementias Frontotemporal dementia Creutzfeldt-Jakob disease Corticobasilar degeneration Progressive supranuclear palsy Many others AD and dementia with Lewy bodies Vascular dementias Multi-infarct dementia Binswanger’s disease Alzheimer Disease Small GW, et al. JAMA. 1997;278:1363-1371; American Psychiatric Association. Am J Psychiatry. 1997;154(suppl):1-39; Morris JC. Clin Geriatr Med. 1994;10:257-276. 3

6. Alzheimer's  There is a new case of Alzheimer’s dementia every 68 seconds!  By Mid Century every 33 seconds!  Most common form of dementia  6 th leading cause of death in the country  5 th if over 65  Average duration 4-6 years after diagnosis  People live 3-20 years after diagnosis  Lots of Variation 11/30/20156

7. Alzheimer’s  AD predicted to double every 20 years  “Silver Tsunami”  1/8 Americans >65 Have AD, 1/3 >85 Have AD  2013 5.2 million estimated to have Alzheimer’s 50% are not diagnosed  By 2050 estimated to be 11.3 - 16 million  Gallup poll 1:10 Americans had a family member with AD, 1:3 knew someone with AD  67% of people dying from Dementias are in SNF  20% of LTC is cancer diagnosis and 28% other conditions 11/30/20157

8. Hospice Related AD Stats  2013 Alzheimer’s Association report revealed in 2009 6% of hospice patients had Alzheimer’s as a primary diagnosis  Another 11% had diagnosis of Non-Alzheimer’s dementia  NHPCO reports 12.8% of hospice admissions carried this diagnosis

9. The Cost of Dementia’s Will Soar  2013 Cost of care for patients who hold a dementia diagnosis is $203 Billion They are generally older They have multiple medical problems DM, CAD, CHF, and COPD Have higher healthcare utilization and are at risk for ED visits and readmission  By 2050 the estimate is $1.2 Trillion Dollars  Medicare and Medicaid cover 70% of the cost! 11/30/20159

10. Cost of Care  2012 15.4 million Americans (60% family members) provide unpaid care to a person with ADRD.  Provided 17.5 billion hours of unpaid care  Totaling an estimated $216.4 billion 11/30/201510

11. Cost of Care Collateral Damage  Caring for Dementia is stressful for Caregivers and PCP’s  Goals of care often put off Patient’s are complex and time consuming  Caregivers have higher healthcare utilization  Caregivers have higher number of chronic conditions Often Neglect treatment  Caregivers have higher rates of Depression This Strains the entire health system even more! 11/30/201511

12. Alzheimer’s Disease (AD)  One way to definitively diagnose AD - an autopsy identifying plaques and tangles that eventually strangle and destroy cells leading to the failure of other systems in the body  Symptoms - decline in ability to perform routine tasks, disorientation, difficulty in learning, loss of language skills, impairment of judgment, and personality changes  As AD progresses, the person becomes unable to care for themselves  Loss of brain cells eventually leads to the failure of other systems in the body

13. Normal Aging vs. Alzheimer’s Temporarily forgetting a colleague’s name Not being able to remember the name later Forgetting the carrots on the stove until the meal is over Forgetting that the meal was ever prepared Unable to find the right word, but using a fit substitute Uttering incomprehensible sentences Forgetting for a moment where you are going Getting lost on one’s own street Talking on the phone, and temporarily forgetting to watch a child Forgetting there is a child NormalPossible Alzheimer’s

14. Normal Aging vs. Alzheimer’s Having trouble balancing a checkbook Not knowing what the numbers mean Misplacing a wristwatch until the steps are retraced Putting a wristwatch in a sugar bowl Having a bad dayHaving rapid mood swings Gradual changes in personality Drastic personality changes Tiring of housework, but getting back to it Not knowing or caring about housework that needs doing NormalPossible Alzheimer’s

15. AD Risk Factors  Age  The older you get, the greater the risk  1 in 8 over 65 are diagnosed with AD  1 in 3 over 85  Family History (Heredity)  Having a parent, brother or sister with AD increases risk of disease. Risk increases if more than one family member has the illness.  Genetics  Early on-set (age 30, 40, 50) caused by mutated gene Most people have “late-onset” AD, develops after age 60

16. Top 10 Warning Signs  Memory loss that disrupts daily life  Challenges in planning or solving problems  Difficulty completing familiar tasks  Confusion with time and place  Trouble understanding visual images and spatial relationships 11/30/201516

17. Top 10 Warning Signs  New problems with words in speaking and writing  Misplace things and have trouble retracing steps  Decreased or poor judgment  Withdrawal from work or social activities  Changes in mood and personality

18. Seven Stages of Cognitive Decline 1.No Impairments 2.Very Mild 3.Mild 4.Moderate 5.Moderately severe 6.Severe 7.Very severe Reisberg, et al (1990). Stage Specific Incidence of Potential Remediable Behavioral Symptoms in Aging and Alzheimer’s Disease. Bulletin of Clinical Neurosciences, 5.

19. Stages of Dementia  We start preparing hospice in late Stage 6  Severe Dementia Stage 6E  Unable to Live on their own  Dependent in most Activities of Daily Living  Incontinent of Bladder and Bowel  Stage 7 marks end stage dementia pathway  Progressive Debility  Loss of ability to speak, ambulate, and interact with environment 11/30/201519

20. Stage 6 Cognitive and Behavioral Changes  Severe Cognitive Decline  Deficits evident and widely vary; may include:  Unaware of current life events:  spouse name, dates, season  Difficulties bathing, dressing, toilet, transfer, continence, feeding  Daily routine and sleeping patterns disturbed  Wandering away from home or caregiver

21. Stage 7 Cognitive and Behavioral Changes  Very Severe Cognitive Decline  Stage when patient may be appropriate for hospice  Deficits are severe and generally include:  Loss of verbal abilities – may grunt, groan  Incontinent – loses control of bladder/bowels  Loss of psychomotor skills like walking, sitting up and smiling  Sleeps longer and more often  Generalized and cortical neurological signs and symptoms are present:  Problems with swallowing  Visual hallucinations

22. What Does this Mean? Alzheimer’s Disease Is A Terminal Diagnosis! 11/30/201522

23. Death and Dementia  Generally, death is due to a complication, commonly infection.  Aspiration Pneumonia  Infected decubitus ulcer (associated osteomyelitis, sepsis, etc.)  UTI These are the proximate causes of death. Alzheimer's dementia is the primary cause of death 11/30/201523

24. Treatment of Proximal Causes of Death  Enhance patient and family comfort  Antibiotics (When appropriate)  Feeding tubes in rare cases  IV hydration (When appropriate)  Wound management:  prevention (frequent turning)  debridement  Wound Vac 11/30/201524

25. Dementia Hospice Eligibility is Based on Decline  Cognitive decline:  FAST score of 7, confusion, agitation  Functional decline:  Increased Dependence in ADL’s,  Nutritional decline:  Weight loss despite adequate intake or feeding tube  Clinical decline:  Worsening palliative performance scale, infections 11/30/201525

26. Functional Decline Functional Assessment Staging Tool-7 Stages 1. No difficulties 2. Subjective forgetfulness 3. Decreased job functioning and organizational capacity 4. Difficulty with complex tasks, instrumental ADLs 5. Requires supervision with ADLs 6. Impaired ADLs, with incontinence 7. A. Ability to speak limited to six words B. Ability to speak limited to single word C. Loss of ambulation D. Inability to sit E. Inability to smile F. Inability to hold head up 11/30/201526

27. Nutritional Decline  Difficulty swallowing or refusal to eat  Caloric intake cannot be maintained  Patient/family refuses artificial nutritional support  If patient is already receiving artificial nutritional support  Weight loss > 10% of normal body weight  Decreasing Body Mass Index (BMI) <22 kg/m2  Decreasing mid-arm muscle area (MMA) 11/30/201527

28. Clinical Decline  Patient has had one or more of the following in the last 6-12 months:  Aspiration pneumonia  Urinary tract infections  Blood infections (sepsis)  Pressure ulcers: Stage III or IV  Recurrent fevers, after antibiotics  Weight loss  Comorbid conditions: CHF, CVD, COPD, RLD, DM, CKD, Malignancy 11/30/201528

29. Benefits of Hospice  Physical, spiritual and emotional symptoms are much better managed.  Allows patient to remain at home / LTC  Hospice staff (physician, nurse/CM, SW, Chaplain, HHA, Volunteer)  Comfort and dignity  DNR/DNI/DNH (note that none are required for hospice care)  Bereavement for surviving family/friends  Patients on hospice often live longer than they otherwise would. 11/30/201529

30. Living Longer Through Hospice  Average length of hospice stay  Primary Diagnosis of Alzheimer's increased from 67 days (1998) to 106 days (2009)  Primary Diagnosis of Non Alzheimer’s Dementia increased 57 days (1998) to 98 days (2009) 11/30/201530

31. Benefits of Hospice  Keeps patients in their home  Home health aide  Allows patient to remain at facility/home  Provides hands on experience for staff/caregivers in caring for the terminally ill  Benefits the physician  Focus  Symptom control  Goals of care  Care of the terminally ill 11/30/201531

32. Patient Case  80 y/o female, lives alone, known with AD for 8 years, recently hospitalized for aspiration pneumonia  ADLs: dependent, with urinary incontinence  Unable to ambulate and speech limited to 1-2 words (FAST 7C)  Weight loss of >10% last 6 months  Family’s goal is comfort, patient was moved to a nursing home and referred to hospice 11/30/201532