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Alzheimer’s Disease: The Long Journey Implications for LTC June 7, 2010 DADS Conference

Alzheimer’s Disease: The Long Journey Implications for LTC June 7, 2010 DADS Conference. Janice A. Knebl, DO, MBA, FACP, FACOI DSWOP Endowed Chair in Clinical Geriatrics Reynolds GET IT Project Director Chief, Division of Geriatrics Professor of Medicine. Objectives.

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Alzheimer’s Disease: The Long Journey Implications for LTC June 7, 2010 DADS Conference

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  1. Alzheimer’s Disease:The Long JourneyImplications for LTCJune 7, 2010 DADS Conference Janice A. Knebl, DO, MBA, FACP, FACOI DSWOP Endowed Chair in Clinical Geriatrics Reynolds GET IT Project Director Chief, Division of Geriatrics Professor of Medicine

  2. Objectives • Describe the diagnostic process associated with Alzheimer’s Disease. • Describe current therapies for Alzheimer’s Disease. • Discuss the principles of management for each stage of Alzheimer’s Disease. • Discuss End-of-Life care in Alzheimer’s Disease.

  3. Overview of Alzheimer’s Disease:Public Health Impact – US Prevalence in 2007 5.1 million people in US with Alzheimer’s disease Every 72 seconds, someone in America develops Alzheimer’s disease; by 2050, it will be every 33 seconds SOURCE: Alzheimer’s Association Facts and Figures, 2007 4 4

  4. Alzheimer’s Disease A progressive degenerative and fatal brain disease that causes memory loss and problems with thinking and behavior severe enough to affect work, lifelong hobbies and/or social life functioning. Overall, it affects quality of life and independence 7th Leading Cause of Death in USA Accounts for >71,000 deaths per year Cummings, NEJM, July 1, 2004 www/alz.org Kung et al. Ntl Vital Stat Reg, 2008 5 5

  5. How is AD diagnosed?Practical Procedures • History and Physical Examination • Assessment of memory and thinking • Blood tests and other laboratory studies to rule out systemic disorders • MRI to rule out brain lesions and sometimes PET 7 7

  6. Why Isn’t There a Simple Test? • No blood marker identified (lots of complicated screens proposed) • No consistent appearance on a neuroimaging test • Normal people have some AD changes • Too many false negatives and false positives 8 8

  7. Can we prevent AD? • No known effective measure • Studies cannot tell the difference between prevention and delay • Reducing mid-life cardiovascular risk factors is the leading hypothesis 9 9

  8. What causes AD? • Plaques and tangles? • Loss of reserve? • Biochemistry of aging? • Weak genetic background? • Chronic inflammation? • All of the above?

  9. Current Therapies • Cholinesterase Inhibitors (donepezil/Aricept; rivastigmine/Exelon; galantamine/Reminyl) • NMDA Receptor Antagonist (memantine/Namenda) • Anti-oxidant Vitamins? (Vitamin E 1000 IU; Vitamin C 1000 mg) • Medications for Behavioral and Psychological Symptoms of Dementia 11 11

  10. Symptoms and Stages of AD Mild Moderate Severe Terminal Resistiveness Incontinence Eating difficulties Motor impairment MMSE < 10 Memory Personality Spatial Disorientation MMSE > 20 I N D E P E N D E N C E Bedfast Mute Dysphagia Intercurrent infections Aphasia Apraxia Confusion Agitation Insomnia MMSE <20>10 Volicer L., JAMA 2001 Olson, 2003

  11. Principles of Management for Behavioral and Psychologic Symptoms • Anti-dementia drugs reduce BPSD • An analysis must be done to look for avoidable triggers • Some behaviors may need medications eg antidepressants, antipsychotics • The risk/benefit ratio of antipsychotic meds is controversial • Sleep disturbance and anxiety should usually not be treated with medications Holmes etal Neurology 2004:63:214-219; Doody etal Neurology 2001; Schneider etal NEJM 2006;355(15):1525-1538 13 13

  12. Reisberg Functional Assessment Staging (FAST) Scale FAST Scale ItemActivity Limitation in AD Stage 1 No difficulty Stage 2 Forgetting location of objects Subjective work difficulties Stage 3  Job functioning evidenced by coworkers Difficulty traveling to new locations Stage 4  ability to perform complex tasks (dinner planning, managing finances) Stage 5 Requires assistance in chosing proper clothing Reisberg, Psychopharmacol Bull 1988;24(4):653-659 14 14

  13. Reisberg Functional Assessment Staging (FAST) Scale FAST Scale ItemActivity Limitation in AD Stage 6  Ability to dress, bath, and toilet independently Substage 6a Difficulty putting clothes on properly Substage 6b Unable to bath properly, fear of bathing Substage 6c Inability to handle mechanics of toileting Substage 6d Urinary Incontinence Substage 6e Fecal Incontinence Reisberg, Psychopharmacol Bull 1988;24(4):653-659 15 15

  14. Reisberg Functional Assessment Staging (FAST) Scale FAST Scale ItemActivity Limitation in AD Stage 7Loss of speech, locomotion and consciousness Substage 7a Ability to speak limited (1-5 words per day) Substage 7b All intelligible vocabulary lost Substage 7c Nonambulatory Substage 7d Unable to smile Substage 7eUnable to hold head up Reisberg, Psychopharmacol Bull 1988;24(4):653-659 16 16

  15. Alzheimer’s Disease:A Terminal Illness Terminal illness is a medical term popularized in the 20th century to describe an active and malignantdisease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient. It indicates a disease which will end the life of the sufferer. Alzheimer’s Disease Course: Prolonged and progressive disability No preventive treatment No curative treatment Multiple other comorbidities Retrogenesis www.wikepedia.org

  16. Alzheimer’s Disease:A Terminal Illness Retrogenesis The process by which degenerative mechanisms reverse the order of acquisition in normal development, especially as exhibited by Alzheimer’s Patients. Reisberg et al. Am J AD other D. 2002 May-Jun;17(3):169-74 18 18

  17. Alzheimer’s DiseaseA Terminal Illness Weight Loss in Alzheimer’s Dementia: Failure of body weight regulation Higher resting energy expenditure Hypermetabolism/Increased energy expenditure Difficulties in providing sufficient calories Neural control mechanisms lost Multifactorial: stage of the disease, living situation, type of dementia Keller et al. JAGS 51:945-951, 2003.

  18. The Clinical Course of Advanced DementiaMitchell et al, NEJM 361:16, Oct 15, 2009 Prospective study of 323 nursing facility residents with advanced dementia ( CPS 5 or 6, Stage VII) and health care proxies followed for 18 mths. Mean age 85.3, 85.4% women, 89.5% white (10.2% black) 54.8% died within 18 months, Probability of death within 6 mths was 24.7% Probability of pneumonia 41.1%, febrile episode 52.6%, eating problem 85.8% ***If had one of these had a 6 month mortality rate of about 40%*** In last 3 months of life over 40% underwent burdensome txments Proxies who had an understanding of poor prognosis and clinical complications expected in advanced dementia were less likely to request burdensome txments 20 20

  19. Artificial Feeding: Legal Cases • Nejdl-Barber Case: 1983 • California, Murder charges • Withdrew IV nutrition & hydration • “Brain Dead”? • Appropriate permission • Charges dropped 21 21

  20. Artificial Feeding: Legal Cases • Nejdl-Barber Case: 1983 (cont’d) ***Medical procedures to provide nutrition/hydration are more similar to other medical procedures than to typical human ways of providing nutrition and hydration. Their benefits and burdens ought to be evaluated in the same manner as other medical procedures*** 22 22

  21. Artificial Feeding: Legal Cases • Claire Conroy Case: 1985 • New Jersey • Removal of Nasogastric Tube • Severe End Stage Dementia • Incompetent but conscious patient • Lower Court – Removal = killing • Higher Court – Autonomy Issue 23 23

  22. Artificial Feeding: Legal Cases • Claire Conroy Case: 1985 (cont’d) • First time a state supreme court ruled that artificial feeding like other txments, may be withheld from an incompetent patient if it is burdensome and contrary to the patients’ interests and values • Also stated that certain patients in nursing homes may refuse medical txment, even at the risk of death 24 24

  23. Artificial Feeding • AMA Council of Judicial and Ethical Affairs (1986) • “Artificially supplied nutrition and hydration are medical treatments to be considered in the same light as other technological procedures” ( Informed Consent needed) • In certain circumstances, life-prolonging medical treatment including “medication and artificially or technologically applied respiration, nutrition or hydration” may be withheld or terminated 25 25

  24. Artificial Feeding Theresa Schiavo: 2003- 05 Cardiac arrest, brain anoxia, resultant PVS 8 years of PEG tube enteral feedings Husband requested tube withdrawal/Her family disagreed “Terri’s Law” – empowered governor to reinsert tube & appoint Guardian Ad Litem March 2005 Tube Removed – Died 13 days later Monturo C. Nutrition in Clinical Practice. Vol 24, No 2, april/May 2009 26 26

  25. Australian Ruling on Tube Feeding Case of Gardner; re BWV (2003) Withdrawal of life-sustaining treatment from incompetent patients as governed by the Victorian Medical Treatment Act 1988 Justice Morris determined that the Public Advocate had the power under the Act to refuse further nutrition and hydration administered via PEG to a 69 year old woman in advanced stages of dementia Court found that artificial nutrition and hydration constitutes medical treatment. It is subject to the same criteria of clinical appropriateness and consent as any other medical treatment, and is NOT a required sustenance measure in palliative care. “Medically Administered Nutrition and Hydration” Ashby MJA. Vol 181, No 8, Oct 2004 27 27

  26. Tube Feeding: Alzheimer’s Association Ethics Advisory Committee “All efforts at life extension in the advanced stage of Alzheimer’s creates burdens and avoidable suffering for patients who could otherwise live out the remainder of their lives in greater comfort and peace” Cardiopulmonary resuscitation, dialysis, tube feeding, and all other invasive technologies should be avoided www.alz.org 28 28

  27. Tube Feeding: AMDA CPG • Tube feeding is appropriate when • Benefits are not outweighed by risks • Choice is consistent with the known values and preferences of patient and family • In end stage dementia, tube feeding has been show to have little or not effect on the clinical course or outcome AMDA CPG on Altered Nutritional Status 29 29

  28. Feeding Tube Data • PEG introduced in 1980 • > 216,000 feeding tubes placed in 2000 • Dementia patients account for 30% feeding tube placements • Long Term complication rate 32-70% • AGA Guidelines: • Patient cannot or will not eat • Gut is functional • Patient can tolerate the placement Cervo et al. Geriatrics June 2006. Vol 61. No 6 30 30

  29. Mortality is High with PEGs • 24% dead in one month • 63% dead in one year • 81% dead in three years JAMA 1998 279:1973-1979 31 31

  30. Mortality Risk Index ScoreMitchell SL et al. JAMA 2004;291:2734-40. Points Risk factor 1.9 Complete dependence with ADLs 1.9 Male gender 1.7 Cancer 1.6 CHF 1.6 O2 tx needed within 14 day 1.5 Shortness of Breath 1.5 < 25% food eaten at most meals 1.5 Unstable medical condition 1.5 Bowel incontinence 1.5 Bedridden 1.4 Age > 83 years 1.4 Not awake most of the day 32

  31. Mortality Risk Index ScoreMitchell SL et al. JAMA 2004;291:2734-40. Risk estimate of death within 6 mths Score Risk % 0 8.9% 1-2 10.8% 3-5 23.2% 6-8 40.4% 9-11 57.0% ≥12 70.0% 33

  32. ADVERSE EFFECTS of PEGs Most common is aspiration pneumonia (up to 66%) PEG tube specifically Tube occlusion (2-35%) Leaking (13-20%) Local infection (4-16%) 34 34

  33. Cross sectional study: N=186,835 Nursing Facility Residents N=15,135 Nursing Facilities Medicare/Medicaid US nursing facilities N=186,835 Nursing Facility residents had CPS score of 6 (very severe impairment with eating problems) 34% residents with CPS score 6 had feeding tubes (N=63,101) TX – 1107 facilities – 38% residents with advanced cognitive impairment had feeding tubes Mitchell, et al JAMA July 2, 2003 – Vol 290, No 1 Clinical and Organizational Factors Associated With Feeding Tube Use Among Nursing Home Residents With Advanced Cognitive Impairment

  34. Results – Resident Characteristics Associated with Feeding Tubes • Younger residents • Male residents • Divorced residents • Non-white residents • No Advanced Directives (DNR, Living Will, Medical Power of Attorney) • Not Alzheimers Disease/ Stroke yes • Recent decline in functional status Mitchell, et al JAMA July 2, 2003 – Vol 290, No 1 36 36

  35. Results – Facility Characteristics Associated with Feeding Tubes • Lack of dementia special care unit • Urban Nursing Facilities • For Profit Facilities • > 100 Bed Facility • Not chain ownership • Advanced Directives • More non white residents • Lack of NP/PA in the facility • Higher rates of admissions with feeding tubes Mitchell, et al JAMA July 2, 2003 – Vol 290, No 1 37 37

  36. Tube Feeding: DADS Quality Mattershttp://mqa.dhs.state.tx.us/qmweb/TubeFeeding.htm • Tube feeding will only be used when it benefits the resident • Decision for tube feeding must address Risks/Benefits/Burdens • Only consider if it is likely to benefit the overall clinical status and it is consistent with patient’s values and goals of care • Use of tube feedings in residents with Advanced Dementia has not been shown to be superior to careful hand feeding 38

  37. Discussion • Feeding tube practice varies among facilities • Higher incidence of feeding tubes in for-profit nursing facilities • Cost saving measure • Higher per diem rates for tube fed residents • Advanced Directives extremely important • Role of race/ethnicity in End of Life Decision Making • Urban Nursing Facilities/Tertiary Care Hospitals • NP/PA knowledgable about LTC setting Mitchell, et al JAMA July 2, 2003 – Vol 290, No 1 39 39

  38. Tube feeding & EOL CARE • The role of the care team is to help decision-makers understand the benefits, burdens and alternatives to tube feeding so they can make an informed decision, that considers the stage of illness and prognosis, and is consistent with the patient’s values and their goals of therapy. 40

  39. Reframing the Discussion:Comfort Feeding Only - CFO Comfort in CFO refers to the stopping point in feeding, emphasizing that the patients will be fed as long as it is not distressing Comfort refers to the Goals of the Feedings: Maintain nutrition through careful hand feeding CFO allows for continued interaction with the resident Places focus on what we ARE doing, rather than what we will NOT do (No ANH) Paleck et al JAGS, 2010 41

  40. Dying With Advanced Dementia in the Nursing HomeMitchell et al, ARCH INT MED Vol 164, Feb 9,2004 • MDS Data on New York Nursing Facilities: 1994-97 • Death within 1 year of nursing facility admission • 1784 Advanced Dementia Residents: Cognitive performance Scale 5 or 6 • 918 Terminal Cancer Residents RESULTS: @ 6 MTHS – 92% Cancer Pts died, 71% Advanced Dementia pts died (Only 1.1% of Advanced Dementia Pts were perceived to have < 6 mths LE) DNR Order - 86.1% Cancer Pts, 55.1% Advanced Dementia Pts DNH Order – 4.2% Cancer Pts, 1.4% Advanced Dementia pts No Tube Feeding Order – 12.6% Cancer Pts, 7.6% Advanced Dementia Pts Died With Feeding Tube – 5.2% Cancer Pts, 25% Advanced Dementia Pts *2 most prevalent conditions: 1.Chewing or Swallowing Problems and 2.Weight Loss* 1.33.6% Cancer Pts, 45.9% Advanced Dementia Pts 2.41.7% Cancer Pts,26.1% Advanced Dementia Pts 42 42

  41. Dying With Advanced Dementia in the Nursing HomeMitchell et al, ARCH INT MED Vol 164, Feb 9,2004 Conclusions: Those with Advanced Dementia who die in nursing facilities are NOT recognized as having a terminal condition Those with Advanced Dementia who die in nursing facilities do NOT receive care that promotes palliation and comfort at End of Life Many with Advanced Dementia did NOT have Advance Directives limiting aggressive care and received uncomfortable interventions before death 43 43

  42. Hospitalized Patients with Advanced DementiaMeier et al. ARCH INT MED, Vol 161, Feb 26, 2001 1994-97 recruited patients admitted to Mount Sinai Hospital - admitted for an acute illness and advanced dementia (≥ Stage 6d) -randomized to Palliative Care Consult vs Usual Care -99 subjects, median age 84, 81% female, 39% black, 36% white, 22% Hispanic, 29% from home and 70% from nursing home, 15% with Advanced Directives, DNR in 57.6% -Feeding tubes: 17% on admission, 80% without at admission 62% of those without tubes at admission had PEGs placed -Median survival – 6 mths.- No survival advantage with or without PEG placement -More likely to receive PEG if African American and lived in NF 44 44

  43. Appropriate Use of Nutrition and Hydration • To determine frequency of symptoms of hunger/thirst in terminally ill patients • To determine if these symptoms could be palliated without forced feeding/hydration or parenteral alimentation McCann et al, JAMA. Oct 26,1994. 272(16) 45 45

  44. Appropriate Use of Nutrition/Hydration • Prospective study – 32 patients • Mentally aware, competent patients • Terminally ill • Sxs recorded: hunger, thirst, dry mouth • Txs recorded: Types of food/fluids to relieve sxs RESULTS: Majority without hunger or thirst In those with sxs of hunger, thirst and/or dry mouth; sxs alleviated with small amounts of food, fluids, ice chips, lubrication to lips McCann et al, JAMA, Oct 26, 1994, 272(16) 46 46

  45. Tube Feeding in Patients with Advanced Dementia • Does tube feeding prevent aspiration pneumonia ? • Does tube feeding prevent the consequences of malnutrition ? • Is survival improved by tube feeding? • Are pressure ulcers prevented or improved by tube feeding ? Finucane et al, JAMA. 1999 47 47

  46. Tube Feeding in Patients with Advanced Dementia • Is the risk of other infections reduced by tube feeding? • Can tube feeding improved functional status? • Does tube feeding improve patient comfort? Finucane et al. JAMA, 1999 48 48

  47. Alternatives to ANH in Patients with Advanced Dementia Strategies for Nutritional Care: Offer fluids q 2 hours Reduce noise and distractions Portable food/ Finger foods High calorically dense foods Appropriate food consistency Smaller plates and bowls Color contrast Appropriate utensils Staff cuing Gentle and “Patient” Hand Feeding Time !!! 49 49

  48. Alternatives to ANH in Patients with Advanced Dementia JLWest Center Experience: Alzheimer’s Disease and Dementias recognized as terminal illnesses Focus on Quality of Life and comfort, not length of life P & Ps – No feeding tubes and No restraints Families informed at time of admission Frequent staging of the Dementia resident Quarterly care plans – discussion of End of Life Care wishes Orders written – AND, DNH, No antibiotics, No lab testing Hospice ordered as appropriate Pain managed throughout the dementia process 50 50

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