1. Toluwalase Ajayi MD Palliative Care Fellow San Diego Hospice and Institute for Palliative Care

2. Objective The overall objective of this talk is to understand how dementia is unique and important in our line of work and how we, as a multidisciplinary palliative care team can help patients and their families navigate through the challenges of this disease.

3. Central Intelligence Agency 2011. Statistics Division 2010, Social indicators, Indicators on health.

4. Epidemiology Population > 65 expected to increase from 12.6% in 2010 to 19.3% in 2030 > 80 years increase from 3.7% to 5.1% Life expectancy increase to 79.5 by 2020 US Census Bureau Accessed July 22, 2010. US Census Bureau. Expectations of life at birth.

5. Epidemiology Dementia increases exponentially with age 1% at 60 yrs to more than 20% at 85 yrs People with dementia estimated to reach 81.1 million by 2030 OConnor DW. Ferri CP et al.

6. Definition Dementia: significant deterioration in cognitive abilities severe enough to interfere with everyday life Palliative care: Improves quality of life for patients and families OConnor DW.

7. Definition Most frequent cause is Alzheimer followed by vascular dementia and then dementia with Lewy body ( DLB ) Langa KM, et al.

8. Alzheimer Dementia Memory Impairment Neuropsychiatric Symptoms Main Features Neurologic signs Lussier et al.

9. Vascular Dementia Memory Impairment Neuropsychiatric Symptoms Main Features Neurologic signs Lussier et al.

10. Lewy Body Dementia Memory Impairment Neuropsychiatric Symptoms Main Features Neurologic signs Lussier et al.

11. Dementia Memory Impairment Neuropsychiatric Symptoms Main Features Neurologic signs Contented Dementia Trust

12. Secondary Symptoms Urinary Incontinence ( 72% )-Please refer to module #... Pain ( 64% )- Please refer to module #... Depression/Low Mood ( 61% )- Please refer to module #... Constipation ( 59% )- Please refer to module #... Loss of appetite ( 57% )- Please refer to module #... McCarthy et al.

13. Management General Approach to management of cognitive dysfunction Multidisciplinary Team

14. Non Pharm Management Cognitive Dysfunction Diminish quality of life Agitation Conflict of caregiver vs patient Non pharmacologically first Koopmans RT et al. Kverno KS et al.

15. Non Pharm Management Art Therapy Music Therapy Activity Therapy Aroma Therapy Douglas, S et al. Burns, A et al.

16. Non Pharm Management Cognitive Dysfunction SPECAL method-Three Golden Rules Dont Ask Questions Listen to the expert Dont Contradict Contented Dementia Trust

17. Non Pharm Management Cognitive Dysfunction Snoezelen approach Van Weert JC et al. multisensory stimulation

18. Pharmacology Treatment Cognitive Dysfunction Rule out medical causes Pharmacologic interventions concurrently Risperidone and olazapine Some antidepressants and neuroleptics Ballard C et al. Pollock BG et al. Lanctot KL et al.

19. Pharmacology Treatment Cholinesterase inhibitors ( eg. donepezil) Delays progression for about 6 mo Memantine for more advanced disease Mainstay for vascular dementia is risk reduction Burns A, et al. Roman G.

20. Pharmacology Treatment Pharmacologic treatment not curative Dementia is a progressive terminal illness Final stages similar for all dementia Mod to severe dementia (MMSE 4 yrs Corey-Bloom J et al. McKeith IG, et al. Larson EB et al.

21. Gazing into the Crystal Ball Encourage advanced care planning!

22. Challenging Decisions Study showed 40.7% with advanced dementia underwent at least one of following in last 3 months of life Hospitalizations ER visit Parenteral Therapy Feeding tube Mitchell SL, et al.

23. Challenging Decisions CPR Unless witnessed in-hospital arrest caused by V-fib; survival is 0.8% Chances of being discharged alive following arrest are almost nil Herlitz J, et al.

24. Challenging Decisions Feeding Knowledge versus emotion Does not improve survival or functional status Associated with post op complications Advocate for comfort feeding Sampson EL, et al. Finucane TE, et al.

25. Challenging Decisions Information to be provided to the resident and family should include: Common causes of eating and swallowing Technical considerations regarding placement and use of peg tubes Principles of benefits of tube feeding Considerations regarding future discontinuation of PEG tube. Data from Mitchell SL et al. Steps to Decision Making Include Guiding residents and their families through what they have learned about PEG tubes How to apply this knowledge to the resident's preferences, personal values and clinical situation What is the residents' situation? What would the resident want? How is the decision affecting the family? What questions need answering Who should decide about the PEG tube placement? When should the PEG be disbanded? What is the residents or the familys overall thoughts about the decision?

26. Challenging Decisions Hydration Differentiate dehydration and thirst Hydration doesn't improve symptoms associated with dehydration Risk of complications Start based on individual cases Jenkins CA et al. Viola RA et al.

27. Challenging Decisions Acute Care Hospitalizations Complications Transfer to acute care hospital for pneumonia might increase mortality Mitchell SL, Kiely DK et al. Thompson RS et al.

28. Challenging Decisions Acute Illness/Pneumonia No consensus No benefit from abx vs better short term survival with more aggressive abx therapy Lack of scientific evidence of this area Congedo M et al. Volicer L et al. Van Der Steen JT et al. Kruse RL et al.

29. Challenging Decisions Chronic Diseases Always Appropriate Analgesics Expectorant Parsons C et al. Antidiarrials Lubricating eye drops Antiemetic Pressure ulcer treatments Laxatives Anxiolytics Inhaled Bronchodila tors Antiepileptic

30. Challenging Decisions Chronic Diseases Sometimes Appropriate PPIs H2 Blockers Antihypertensive Thyroids Hormones AntiIschemic Parsons C et al. Antiemetic Diuretics Pressure ulcer treatments Digoxin AntiThyroid InhaledSteroids Hypoglycem ic Antipyschotics Antidepressants

31. Challenging Decisions Chronic Diseases Rarely Appropriate AntiAndrogens Parsons C et al. Bisphosphonates Minerals Heparin Vitamins Warfarin Appetite Stimulants Bladder Relaxants

32. Challenging Decisions Chronic Diseases Never Appropriate LipidLowering Medication Parsons C et al. Anti-platelets excluding aspirin Antiestrogens Sex Hormone Cytotoxic Chemotherapy Hormone Antagonist

33. Challenging Decisions Dementia Medications Recommended as long as clinic benefit Stopped in MMSE< 10 for Cholinesterase inhibitors; < 3 for Memantine 80% medical directors recommend stopping at hospice 30% accelerated cognitive and functional decline Shega et al. Sengstaken et al.

34. Understanding the Loss Developmental milestone of children Developmental regression of dementia

35. Reframing Loss

36. Summary Prevalence of Dementia is increasing internationally Management of advanced dementia involves a multidisciplinary team Advance care planning is critical Reframing dementia rather than battling dementia is vital

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