Hospice Education Network - Disease Specific Clinical Eligibility & Documentation: Alzheimer's Disease & 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
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Course Handouts & Disclosure
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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.
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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
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Hospice Education Network - Disease Specific Clinical Eligibility & Documentation: Alzheimer's Disease & Dementia
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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
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Dementia Subtypes
Alzheimer'sMost
common type
60-80% of cases
Results from deposits of protein
plaques and tangles in the brain
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Dementia Subtypes
Vascular
15-30%
Lewy
dementia (multi-infarct dementia)
cases
Body dementia
10-15% cases
Frontotemporal
<1%
dementia
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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Hospice Education Network - Disease Specific Clinical Eligibility & Documentation: Alzheimer's Disease & Dementia
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Prevalence of AD
Estimated
5.4 million Americans have
AD (2011)
1
in 8 older Americans age 65 >
prevalent in women
More
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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Hospice Education Network - Disease Specific Clinical Eligibility & Documentation: Alzheimer's Disease & Dementia
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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
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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
Regions
of brain
spared
Occipital
Primary sensory
and motor
Temporal lobe
Frontal lobes
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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.
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Symptoms of AD
Neurocognitive
Memory
loss
Cognitive deficits
Confusion/
disorientation
Combativeness/
agitation
Loss of speech
Incoherence
Unresponsive
Functional
Loss
of mobility
to carry out
ADLs
Inability
Nutritional
Loss
of appetite
of ability to
swallow
Loss
Dementia/Frailty Trajectory
High
Function
Low
Onset could be deficits in
ADL, speech, ambulation
Death
Time
Quite variable up to 6-8 years
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Hospice Education Network - Disease Specific Clinical Eligibility & Documentation: Alzheimer's Disease & Dementia
Natural History of AD Progression
Olson, 2003
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FAST ScaleFunctional 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
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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
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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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Hospice Education Network - Disease Specific Clinical Eligibility & Documentation: Alzheimer's Disease & Dementia
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Vascular Dementia (two types)
2) White matter
changes and
subcortical infarct
1) Multi-infarct
dementia
Sudden
onset
neurological
signs and symptoms
Cognitive deficits
variable
Gradual
onset
focal signs and
symptoms
Memory loss,
slowness of thought
with motor slowing
Focal
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No
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
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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
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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
disease is a type of frontotemporal
dementia
Pick’s
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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
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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
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Final Stages of Dementia (cont.)
Nutritional
Progressive
loss
of appetite
Progressive loss
of ability to
swallow
Aspiration risk
increases
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Final Stages of Dementia (cont.)
Functional
Motor
system preserved until advanced
stage
Independent
mobility eventually is lost:
bedbound
Capacity
for self care progressively lost:
patient becomes totally dependent
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Final Stages of Dementia (cont.)
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
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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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End stage issues in patients with
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
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End stage issues in patients with
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
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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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Hospice Education Network - Disease Specific Clinical Eligibility & Documentation: Alzheimer's Disease & Dementia
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
Nature
of disease course
Treatment
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challenges
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 Education Network - Disease Specific Clinical Eligibility & Documentation: Alzheimer's Disease & Dementia
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Hospice Eligibility
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LCD Guidelines for Hospice
Eligibility and Recertification
for Alzheimer’s Dementia
NGS LCD Number L25678
CGS LCD Number L32015
NHIC LCD Number L29881
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Non-disease Specific Guidelines
Both A & B must be met:
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.
A.
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Alzheimer’s & Related Disorders:
Disease-Specific Guidelines
1.
Patients with dementia should show all the
following characteristics:
FAST score of 7a or beyond
Unable to ambulate without assistance
Unable to dress without assistance
Unable to bathe without assistance
Urinary and fecal incontinence, intermittent or
constant
f. No consistently meaningful verbal communication:
stereotypical phrases only or the ability to speak is
limited to 6 or fewer intelligible words
a.
b.
c.
d.
e.
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Alzheimer’s, cont’d.
Patients should have had 1 of the following
within the past 12 months:
2.
Aspiration pneumonia
Pyelonephritis
Septicemia
Decubitus ulcers, multiple, Stage III-IV
Fever, recurrent after antibiotics
Inability to maintain sufficient fluid and calorie
intake with 10% weight loss during the previous 6
months or serum albumin <2.5gm/dl
a.
b.
c.
d.
e.
f.
+ 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.
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Admission Assessment and
Documentation
Answer:
What
Why Hospice? Why Now?
triggered the referral?
Hospitalization
Changes
in condition
in goals of care
Co-morbidities
Symptom exacerbation
Need for additional care
Changes
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Hospice Education Network - Disease Specific Clinical Eligibility & Documentation: Alzheimer's Disease & Dementia
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IDT Assessment and Documentation
Cognitive
FAST
status (behavior, communication, LOC)
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)
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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
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Common Secondary (related)
Conditions
Agitation/delirium
Pain
Aspiration
Pressure
Confusion/memory
impairment
ulcer(s) /
skin breakdown
Upper
respiratory tract
infections/pneumonia
Falls
Urinary
Fever
Weight
tract infections
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.
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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.
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Supporting/Ongoing Documentation
Documentation
should support a 6 month
prognosis
Family/caregiver’s
psychosocial/spiritual
needs and associated changes over time
Increased
Need
service utilization
for more frequent visits
involvement by members of IDT
Greater
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Hospice Education Network - Disease Specific Clinical Eligibility & Documentation: Alzheimer's Disease & Dementia
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Supporting/Ongoing Documentation
Changes
in signs/symptoms
Dietary
& weight changes
Medication changesaddition/discontinuation/titration/route of
administration, etc.
Skin breakdown
Fever
Cognitive/behavioral status
Interventions
provided and response by patient
or caregiver
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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.
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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
to bathe or dress without assistance
Urinary and fecal incontinence
No meaningful verbal communication
Unable
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Hospice Education Network - Disease Specific Clinical Eligibility & Documentation: Alzheimer's Disease & Dementia
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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
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Terri Maxwell PhD, APRN
tmaxwell@weatherbeeresources.com
Hospice Education Network (c) 2012
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