Alzheimer s disease the long journey implications for ltc june 7 2010 dads conference
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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 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


  • 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.

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



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


Kung et al. Ntl Vital Stat Reg, 2008



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



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



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



What causes AD?

  • Plaques and tangles?

  • Loss of reserve?

  • Biochemistry of aging?

  • Weak genetic background?

  • Chronic inflammation?

  • All of the above?

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



Symptoms and Stages of AD

Mild Moderate Severe Terminal







MMSE < 10





MMSE > 20























MMSE <20>10

Volicer L., JAMA 2001

Olson, 2003

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



Reisberg Functional Assessment Staging (FAST) Scale

FAST Scale ItemActivity Limitation in AD

Stage 1No difficulty

Stage 2Forgetting 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 5Requires assistance in chosing proper clothing

Reisberg, Psychopharmacol Bull 1988;24(4):653-659



Reisberg Functional Assessment Staging (FAST) Scale

FAST Scale ItemActivity Limitation in AD

Stage 6 Ability to dress, bath, and toilet independently

Substage 6aDifficulty putting clothes on properly

Substage 6bUnable to bath properly, fear of bathing

Substage 6cInability to handle mechanics of toileting

Substage 6dUrinary Incontinence

Substage 6eFecal Incontinence

Reisberg, Psychopharmacol Bull 1988;24(4):653-659



Reisberg Functional Assessment Staging (FAST) Scale

FAST Scale ItemActivity Limitation in AD

Stage 7Loss of speech, locomotion and consciousness

Substage 7aAbility to speak limited (1-5 words per day)

Substage 7bAll intelligible vocabulary lost

Substage 7cNonambulatory

Substage 7dUnable to smile

Substage 7eUnable to hold head up

Reisberg, Psychopharmacol Bull 1988;24(4):653-659



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


Alzheimer’s Disease:A Terminal Illness


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



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.

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



Artificial Feeding: Legal Cases

  • Nejdl-Barber Case: 1983

    • California, Murder charges

    • Withdrew IV nutrition & hydration

    • “Brain Dead”?

    • Appropriate permission

    • Charges dropped



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***



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



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



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



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



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



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



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



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



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



Mortality Risk Index ScoreMitchell SL et al. JAMA 2004;291:2734-40.

PointsRisk factor

1.9Complete dependence with ADLs

1.9Male gender



1.6O2 tx needed within 14 day

1.5Shortness of Breath

1.5< 25% food eaten at most meals

1.5Unstable medical condition

1.5Bowel incontinence


1.4Age > 83 years

1.4Not awake most of the day


Mortality Risk Index ScoreMitchell SL et al. JAMA 2004;291:2734-40.

Risk estimate of death within 6 mths

ScoreRisk %









Most common is aspiration pneumonia

(up to 66%)

PEG tube specifically

Tube occlusion (2-35%)

Leaking (13-20%)

Local infection (4-16%)



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

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



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



Tube Feeding: DADS Quality Matters

  • 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



  • 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



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.


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


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


    @ 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



Dying With Advanced Dementia in the Nursing HomeMitchell et al, ARCH INT MED Vol 164, Feb 9,2004


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



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



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)



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


    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)



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



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


    Finucane et al. JAMA, 1999



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 !!!



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



Ethical PrinciplesApplication to ANH in Advanced Dementia

  • Beneficence

    • Obligation to provide benefits and balance benefits against rights

  • Non-maleficence

    • Obligation to avoid the causation of harm (Primum Non Nocere)

  • Respect/Autonomy

    • Obligation to respect the decision-making capacities of autonomous persons

  • Justice

    • Obligations of fairness in distribution of benefits and risk




Clarfield et al, JAGS 51:1149-1154, 2003




Clarfield et al, JAGS 51:1149-1154, 2003



Approaches in Advanced Dementia

  • Determine the Goal of Care

    • Prolong Life

    • Provide Calories during Periods of Illness

    • Provide Comfort

    • Explore realistic expectations

  • Advanced Care Planning to include ANH discussion

  • Burdens vs. Benefits

  • Decision Making Capacity/ Substituted Judgment

  • Institutionalized Populations – Regulatory Issues Need to be Addressed

  • Temporary vs. Permanent

  • Consider Co-Morbid Conditions

  • Hospice Care



Appropriate End of Life Care Orders in Advanced AD



Do not transfer

No feeding tubes/ No ANH

No hospitalization

Others: No antibiotics, No laboratory tests, No blood products, etc.

Texas Advanced Care Planning documents

Directive to Physicians

Medical Power of Attorney

Out of Hospital Do Not Resuscitate (OOHDNR)

Artificial Nutrition and Hydration Issues – Final thoughts

  • Difficult to discuss -Food, water are symbols of caring/ doing something

  • High tech association/ Enamored with tech

  • In reality: More or less care? Prolong dying? Prolong suffering? No survival improvement.

  • Appreciate cultural/religious background

  • Advanced Care Planning important(For each 10%  in # of DNRs, 4.5%  in Feeding Tube placement requests)

  • Recognize that Dementia is a Terminal Disease

  • Focus on patient comfort

  • Education about ANH

  • Comprehensive Approach to Transitions of Care (Team)

  • Need for Prospective RCT

  •  to Medically Administered Nutrition and Hydration or Comfort Feeding Only



“Thank you!”Questions?

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



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