Alzheimer’s Dementia: Determining and Documenting · PDF fileParkinson’s Disease w/ dementia ... N EnglJ Med, 2009, 361(16): 1529-38 + End stage issues in patients with dementia

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+Alzheimer’s Dementia:

Determining and

Documenting Hospice

Eligibility

Terri L. Maxwell PhD, APRN

VP, Strategic Initiatives

Weatherbee Resources

Hospice Education Network

+Course Handouts & Disclosure

�To download presentation handouts, click on the attachment icon

� Presenter discloses no financial relationships with a commercial entity producing healthcare-related products and/or services. Conflict of interest disclosure and resolution statement is on file with HEN.

� This presentation is for educational and informational purposes only. It is not intended to provide legal, technical or other professional services or advice.

+Objectives

�Describe the epidemiology and pathophysiology of dementia

�Discuss the final stages of dementia, including prognostic factors

�Describe potential benefits of hospice for patient with dementia

�Name the clinical data points necessary to substantiate hospice eligibility for patients with dementia

Hospice Education Network - Disease Specific Clinical Eligibility & Documentation: Alzheimer's Disease & Dementia

Hospice Education Network (c) 2012

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+Overview of Dementia

�Irreversible, progressive

brain disease that

slowly destroys memory,

thinking, and motor

skills.

�Caused by various

diseases and conditions

+Dementia Subtypes

�Alzheimer's-

�Most common type

�60-80% of cases

�Results from deposits of protein

plaques and tangles in the brain

+Dementia Subtypes

�Vascular dementia (multi-infarct dementia) �15-30% cases

�Lewy Body dementia� 10-15% cases

�Frontotemporal dementia �<1% cases

�Parkinson’s Disease w/ dementia�Occurs in 20-40% of patients with PD

�Risk rises in patients with PD for > 8 yrs



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+Prevalence of AD

�Estimated 5.4 million Americans have AD (2011)

�1 in 8 older Americans age 65 >

�More prevalent in women

�Differences are d/t women living longer, not d/t true gender differences

�African Americans and Hispanics more likely to develop dementia

2011 Alzheimer's Disease Facts and Figures

+ Projected Numbers of People

Diagnosed with Dementia

By 2030, the number of people with AD is

expected to double

2011 Alzheimer's Disease Facts and Figures

+Pathophysiology of Dementia

�The brain has billions of

neurons, each with an axon

and many dendrites.

�To stay healthy, neurons must

communicate with each other,

carry out metabolism, and

repair themselves.

�AD disrupts all three of these

essential jobs.



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+Pathophysiology of Dementia

�People with AD have an

abundance of the following:

�Beta-amyloid plaques

�Neurofibrillary tau tangles

that lead to…

neurodegenerative

changes, eventually

resulting in clinical

symptoms

Actual AD plaque

Actual AD tangle

+Neuronal Cell Death in AD

+Clinical Symptoms Vary Depending

on Region of Brain Affected

�Regions of the brain most affected

� Hippocampus

�Amygdala

� Temporal lobe

� Frontal lobes

�Regions of brain spared

� Occipital

� Primary sensory and motor



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+AD and the

Brain

In severe AD,

extreme shrinkage

occurs in the

brain. Patients are

completely

dependent on

others for care.

+Symptoms of AD

�Neurocognitive

�Memory loss

�Cognitive deficits

�Confusion/

disorientation

�Combativeness/

agitation

�Loss of speech

�Incoherence

�Unresponsive

�Functional

�Loss of mobility

�Inability to carry out

ADLs

�Nutritional

�Loss of appetite

�Loss of ability to

swallow

TimeOnset could be deficits in

ADL, speech, ambulationQuite variable -

up to 6-8 years

Death

High

Low

Dementia/Frailty Trajectory

Function



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Natural History of AD Progression

Olson, 2003

+FAST Scale-

Functional Assessment Stage

FAST Scale Stage Characteristics

15normal adult No functional decline

25normal older adult Personal awareness of some functional decline

35early Alzheimer’s Disease Noticeable deficits in demanding job situations

45mild Alzheimer’s Requires assistance in complicated tasks such

as handling finances, planning parties, etc.

55moderate Alzheimer’s Requires assistance in choosing appropriate

attire

65moderately severe

Alzheimer’s

Requires assistance dressing, bathing, toileting,

urinary/fecal incontinence

75severe Alzheimer’s Able to speak only half-dozen intelligible words.

Progressive loss in ability to walk, sit up, smile,

and hold head up.

Reisberg, 1988; Psychopharmacology Bulletin

+FAST Scale Cont’d

Stage 7 subscales

a. Ability to speak limited to 6 words

b. Ability to speak limited to 1 word

c. Loss of ambulation

d. Inability to sit

e. Inability to smile

f. Inability to hold head up

Patients are generally considered hospice appropriate at Stage 7a



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+Prognosis

�Median survival 5-9 years but actual

prognosis may be worse

�Younger patients and females have slightly

longer survival

�Presence of behavioral and psychiatric

symptoms not associated with worse

survival

+Dementia Subtypes

+Vascular (multi-infarct) Dementia

�History: sudden onset, follows stroke or TIA

�Clinical features- similar to AD; depends upon region of the brain affected

�Early presence of gait disturbances

�History of unsteadiness and falls

�Incontinence

�Personality and mood changes

�Memory problems may be less compared to AD



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+Vascular Dementia (two types)

1) Multi-infarct

dementia

�Sudden onset

�Focal neurological

signs and symptoms

�Cognitive deficits

variable

2) White matter changes and subcortical infarct�Gradual onset

�No focal signs and symptoms

�Memory loss, slowness of thought with motor slowing

+Risk Factors for Vascular

Dementias

�Hypertension

�Peripheral arterial disease

�Diabetes mellitus

NOTE:When a patient is admitted to hospice with vascular dementia, these conditions are generally considered “related” and their associated therapies should be covered by hospice

+Lewy Body Dementia

�Results from Lewy body deposits in brain

�Clinical symptoms�AD-type signs- confusion, problems with memory and judgment

�Visual hallucinations common

�Parkinsonian signs- rigid muscles, slowed movement, shuffling walk and tremors

�Alertness and cognitive symptoms may fluctuate daily



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+Lewy Body Dementia cont’d

�Prognosis- typically 5-7 yrs

NOTE: Anti-psychotics used to treat

psychiatric symptoms may worsen Lewy

Body symptoms and can be life-threatening

+Frontotemporal Dementia

�Cellular damage is concentrated in the front and side regions of the brain

�Typical symptom patterns:

�Changes in personality and behavior

�Difficulty with language

�Pick’s disease is a type of frontotemporaldementia

+Parkinson’s Disease with Dementia

Parkinson’s Disease:

�Progressive disorder associated with dopamine deficiency

�Characteristic signs- resting tremor, rigidity, gait disturbance

Parkinson’s dementia:

�Compared to AD: more hallucinations, greater visuospatial defects, greater fluctuating attention



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+Final Stages of Dementia

http://www.medicinenet.com/dementia_pictures_slideshow/article.htm

+Final Stages of Dementia

�Neurocognitive

�Progressive worsening of memory and other cognitive deficits

�Profound confusion, disorientation

�Behavioral changes: combativeness, resistance giving way to apathy, coma

�Worsening speech: incoherence, eventually mute

+Final Stages of Dementia (cont.)

�Nutritional

�Progressive loss of appetite

�Progressive loss of ability to swallow

�Aspiration risk increases



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�Functional

�Motor system preserved until advanced

stage

�Independent mobility eventually is lost:

bedbound

�Capacity for self care progressively lost:

patient becomes totally dependent


�Death results from the deterioration of the

“mind-body connection” usually due to secondary impairments

�bowel and bladder incontinence

�malnutrition

� fevers and infections (pneumonia, UTIs, sepsis)

�decubitus ulcers

� falls

Mitchell et al., N Engl J Med, 2009, 361(16): 1529-38

+End stage issues in patients with

dementia

�Use of aggressive, life-prolonging

medical care

�CPR – Studies demonstrate pts with

dementia do very poorly after CPR

�Nutrition and hydration

�Repeated bouts of aspiration do not

benefit from PEG tube insertion

�Need for proxy decision-making

Li, 2002; Am Family Phys



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dementia

�Treatment of infections

�Use of antibiotics is controversial;

antibiotics are frequently used in

patients with dementia in the final

few weeks of life

�Need to weigh risk vs. benefit and

patient’s goals of care

D’Agata & Mitchell, Arch Int Med, 2008


dementia

�Management of behavioral problems

�Controversial role of cholinesterase inhibitors

and NMDA receptor antagonists in hospice

�Non-pharmacologic approaches

�Pharmacologic management- antipsychotics

should be prescribed based upon the goals of

care and after weighing risk versus benefit

+Dementia and Hospice

�3rd most common

primary non-cancer

diagnosis in

hospice

�11.2% hospice

admissions

NHPCO Facts and Figures, 2010



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Potential Benefits of Hospice

�Higher satisfaction with care

�More likely to to report unmet need related to pain

�Rated peacefulness of dying and the quality of dying more positively c/t families without hospice

�Provision of bereavement services

Teno, et al 2011 JAGs

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Barriers to Hospice Enrollment

�Dementia not viewed as terminal illness

�Prognostic challenges

�Nature of disease course

�Treatment decisions

+Prognostic Factors

�Co-morbidies:�DM, CHF, COPD, cancer, cardiac dysrhythmias, etc.

�Signs:�Aspiration

�Peripheral edema

�Recent weight loss

�Bowel incontinence

�Seizures

�Dehydration

�Pressure ulcers

�Symptoms:�Fever

�Shortness of breath

�Dysphagia

�Pain



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+Hospice Eligibility

+

NGS LCD Number L25678

CGS LCD Number L32015

NHIC LCD Number L29881

LCD Guidelines for Hospice

Eligibility and Recertification

for Alzheimer’s Dementia

+Non-disease Specific Guidelines

Both A & B must be met:

A. Impaired functional status- KPS <70 or PPS <70

B. Dependence on assistance for 2 or > ADLs

C. Presence of co-morbidities that contribute to disease burden

� HF

� Diabetes

� Dementia, etc.



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+Alzheimer’s & Related Disorders:

Disease-Specific Guidelines

1. Patients with dementia should show all the following characteristics:a. FAST score of 7a or beyondb. Unable to ambulate without assistancec. Unable to dress without assistanced. Unable to bathe without assistancee. Urinary and fecal incontinence, intermittent or

constantf. No consistently meaningful verbal communication:

stereotypical phrases only or the ability to speak is limited to 6 or fewer intelligible words

+Alzheimer’s, cont’d.

2. Patients should have had 1 of the following

within the past 12 months:

a. Aspiration pneumonia

b. Pyelonephritis

c. Septicemia

d. Decubitus ulcers, multiple, Stage III-IV

e. Fever, recurrent after antibiotics

f. Inability to maintain sufficient fluid and calorie

intake with 10% weight loss during the previous 6

months or serum albumin <2.5gm/dl

+ Limitations of Hospice Criteria

�Criteria for dementia not evidence-based

�Multiple studies find hospice guidelines fail to predict 6 month survival

�Guidelines do a better job of predicting who will live longer than 6 months than who will die

�Of hospice diagnoses, dementia has the greatest variability around median survival

�Guidelines fail to account for quality of care provided



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+

Limitations of Hospice Criteria (cont’d)

�Some patients cannot be rated on the FAST

because their disease symptoms do not progress

in an expected order- especially those with a

non-AD subtype

�Predicting death is difficult because the cause

of death is often due to unpredictable

complications

Figure 1. Mortality Risk Index Score for Stratification of Residents Into

Levels of Risk for 6-Month Mortality.

Mitchell, S. L. et al. JAMA 2004;291:2734-2740

Copyright restrictions may apply.

+Admission Assessment and

Documentation

�Answer: Why Hospice? Why Now?

�What triggered the referral?

�Hospitalization

�Changes in condition

�Changes in goals of care

�Co-morbidities

�Symptom exacerbation

�Need for additional care



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+IDT Assessment and Documentation

�Cognitive status (behavior, communication, LOC)

�FAST score

�Nutritional status (ht, wt, BMI calculation, meal percentages, calorie approximations, hydration status)

�Risk factors (fall/safety, aspiration)

�Skin issues (contractures, pressure ulcers, wounds, turgor)

�Infections/treatments (if any)

+IDT Assessment and Documentation

(cont’d)

�Health care utilization/procedures (recent

hospitalization or ED visit, foley catheter,

tube feedings, etc).

�Self care status- should be total care

�Performance status (PPS/KPS score)

�Symptoms

+Common Secondary (related)

Conditions

�Agitation/delirium

�Aspiration

�Confusion/memory

impairment

�Falls

�Fever

�Pain

�Pressure ulcer(s) /skin breakdown

�Upper respiratory tract infections/pneumonia

�Urinary tract infections

�Weight loss



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+Is this a Hospice appropriate referral?

Pt is an 84yo F w/ Alzheimer’s dementia residing

in Nursing Home, s/p 3 hospitalizations for

dehydration and UTIs in the 4mo prior to Hospice

enrollment. Pt also w/ 25lb wt loss in past 6 mos.

Decline in the past 6mo evidenced by new full

dependence for all ADLs, down to less than

6 meaningful words/d (FAST 7A.). Patient’s 86 yo

husband visits daily to assist with feeding.

Pt DNR/CMO and husband wishes no ABX or

other measures to prolong life.

+Is this Patient Hospice appropriate?

90 yo male with advanced Alzheimer’s disease.

Pt requires assistance with bathing, getting

dressed, toileting, but can still speak more than

6 intelligible words on an avg day (FAST 6C).

Pt has progressive Stage III decubiti that have

been present and poorly healing for past 4 mos.

Pt has dysphagia.

Co-morbidities: Severe PAD s/p lower extremity

bypass graft and CAD s/- MI x 2. POA requests

CMO.

+Supporting/Ongoing Documentation

�Documentation should support a 6 month

prognosis

�Family/caregiver’s psychosocial/spiritual

needs and associated changes over time

�Increased service utilization

�Need for more frequent visits

�Greater involvement by members of IDT



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+Supporting/Ongoing Documentation

�Changes in signs/symptoms�Dietary & weight changes

�Medication changes-addition/discontinuation/titration/route of administration, etc.

� Skin breakdown

� Fever

�Cognitive/behavioral status

�Interventions provided and response by patient or caregiver

+Supporting Documentation example: is

this patient eligible?

12 months after Hospice admission, patient still at FAST 7E with little change in cognition. Patient requires total assist for all ADLs. Appetite improved; drinking Ensure 3 x day in addition to pureed diet. Weight stable at 120 lbs (5’4”). No pneumonias or systemic infection in past 8 mos. Receiving weekly nursing visits and hospice aide 3 X week. Volunteer takes patient out to garden in wheelchairs and documents that patient points to the flowers and smiles.

+Conclusion

�Dementia patients benefit from hospice care,

but 6 month prognosis is difficult to estimate

�Patients admitted to hospice with a terminal

diagnosis of dementia usually demonstrate the

following:

�Unable to ambulate without assistance

�Unable to bathe or dress without assistance

�Urinary and fecal incontinence

�No meaningful verbal communication



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+Course Evaluation & Post Test

Thank you for viewing this course on the

Hospice Education Network

The course evaluation and post test are

available from your course catalog page

+

Terri Maxwell PhD, APRN

[email protected]



Documents

Alzheimer’s Dementia: Determining and Documenting · PDF fileParkinson’s Disease w/ dementia ... N EnglJ Med, 2009, 361(16): 1529-38 + End stage issues in patients with dementia