Dementia: A Terminal illness

Hospice for Patients with Dementia

Dr. Joette GreensteinMedical Director, Columbus

Objectives

Define dementia and the prevalence, pathology and trajectories

Identify patients with dementia who are appropriate for hospice care

Review the hospice care benefits for patients with dementia

Explain the Cost of Dementia on the healthcare system

Explain How Hospice can help patients, families, physicians, and caregivers

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Dementia Definition

Dementia isn’t a specific disease

It describes a group of symptoms affecting intellectual and social abilities severe enough to interfere with daily functioning

Variety of diseases that result in the death of neurons

91% of the time, it is an irreversible disorder that is progressive and Terminal

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Dementia

The most common form of dementia is Alzheimer’s 60-80% of cases

Most elderly with dementia have Mixed form of Alzheimer’s and another form

Many of these signs apply to other dementias Common Symptom cluster at end of life

Different dementias have different trajectories, symptoms, and treatments Prognosis is related to function and other chronic conditions

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Differential Diagnosis of Dementia

5% 10% 65% 5% 7% 8%

Dementia w/ Lewy bodiesDementia w/ Lewy bodies Parkinson’s disease Parkinson’s disease

Diffuse Lewy body disease Diffuse Lewy body disease Lewy body variant of AD Lewy body variant of AD

Vascular dementias Vascular dementias and ADand AD

Other dementiasOther dementias Frontotemporal dementia Frontotemporal dementia

Creutzfeldt-Jakob disease Creutzfeldt-Jakob disease Corticobasilar degeneration Corticobasilar degeneration

Progressive supranuclear palsyProgressive supranuclear palsy Many others Many others

AD and dementia AD and dementia with Lewy bodieswith Lewy bodies

Vascular dementiasVascular dementias Multi-infarct dementia Multi-infarct dementia Binswanger’s disease Binswanger’s disease

Alzheimer Alzheimer DiseaseDisease

Small GW, et al. JAMA. 1997;278:1363-1371; American Psychiatric Association. Am J Psychiatry. 1997;154(suppl):1-39; Morris JC. Clin Geriatr Med. 1994;10:257-276.

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Alzheimer's

There is a new case of Alzheimer’s dementia every 68 seconds! By Mid Century every 33 seconds!

Most common form of dementia

6th leading cause of death in the country 5th if over 65

Average duration 4-6 years after diagnosis People live 3-20 years after diagnosis

Lots of Variation

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Alzheimer’sAD predicted to double every 20 years

“Silver Tsunami”

1/8 Americans >65 Have AD, 1/3 >85 Have AD

2013 5.2 million estimated to have Alzheimer’s 50% are not diagnosed By 2050 estimated to be 11.3 - 16 million

Gallup poll 1:10 Americans had a family member with AD, 1:3 knew someone with AD

67% of people dying from Dementias are in SNF 20% of LTC is cancer diagnosis and 28% other conditions

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Hospice Related AD Stats

2013 Alzheimer’s Association report revealed in 2009 6% of hospice patients had Alzheimer’s as a primary diagnosis Another 11% had diagnosis of Non-Alzheimer’s dementia

NHPCO reports 12.8% of hospice admissions carried this diagnosis

The Cost of Dementia’s Will Soar

2013 Cost of care for patients who hold a dementia diagnosis is $203 Billion

• They are generally older• They have multiple medical problems DM, CAD,

CHF, and COPD• Have higher healthcare utilization and are at risk

for ED visits and readmission By 2050 the estimate is $1.2 Trillion Dollars Medicare and Medicaid cover 70% of the cost!

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Cost of Care

2012 15.4 million Americans (60% family members) provide unpaid care to a person with ADRD. Provided 17.5 billion hours of unpaid care

Totaling an estimated $216.4 billion

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Cost of Care Collateral Damage

Caring for Dementia is stressful for Caregivers and PCP’s Goals of care often put off

• Patient’s are complex and time consuming

Caregivers have higher healthcare utilization

Caregivers have higher number of chronic conditions

• Often Neglect treatment

Caregivers have higher rates of Depression

This Strains the entire health system even more!

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Alzheimer’s Disease (AD)

One way to definitively diagnose AD - an autopsy identifying plaques and tangles that eventually strangle and destroy cells leading to the failure of other systems in the body

Symptoms - decline in ability to perform routine tasks, disorientation, difficulty in learning, loss of language skills, impairment of judgment, and personality changes

As AD progresses, the person becomes unable to care for themselves

Loss of brain cells eventually leads to the failure of other systems in the body

Normal Aging vs. Alzheimer’s

Temporarily forgetting a colleague’s name

Not being able to remember the name later

Forgetting the carrots on the stove until the meal is over

Forgetting that the meal was ever prepared

Unable to find the right word, but using a fit substitute

Uttering incomprehensible sentences

Forgetting for a moment where you are going

Getting lost on one’s own street

Talking on the phone, and temporarily forgetting to watch a child

Forgetting there is a child

Normal Possible Alzheimer’s

Normal Aging vs. Alzheimer’s

Having trouble balancing a checkbook

Not knowing what the numbers mean

Misplacing a wristwatch until the steps are retraced

Putting a wristwatch in a sugar bowl

Having a bad day Having rapid mood swings

Gradual changes in personality

Drastic personality changes

Tiring of housework, but getting back to it

Not knowing or caring about housework that needs doing

Normal Possible Alzheimer’s

AD Risk Factors

Age The older you get, the greater the risk

1 in 8 over 65 are diagnosed with AD 1 in 3 over 85

Family History (Heredity) Having a parent, brother or sister with AD increases risk of

disease. Risk increases if more than one family member has the illness.

Genetics Early on-set (age 30, 40, 50) caused by mutated gene

Most people have “late-onset” AD, develops after age 60

Top 10 Warning Signs

Memory loss that disrupts daily life Challenges in planning or solving problems Difficulty completing familiar tasks Confusion with time and place Trouble understanding visual images and spatial

relationships

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Top 10 Warning Signs

New problems with words in speaking and writing

Misplace things and have trouble retracing steps

Decreased or poor judgment

Withdrawal from work or social activities

Changes in mood and personality

Seven Stages of Cognitive Decline

1. No Impairments

2. Very Mild

3. Mild

4. Moderate

5. Moderately severe

6. Severe

7. Very severe

Reisberg, et al (1990). Stage Specific Incidence of Potential Remediable Behavioral Symptoms in Aging and Alzheimer’s Disease. Bulletin of Clinical Neurosciences, 5.

Stages of Dementia

We start preparing hospice in late Stage 6 Severe Dementia Stage 6E

Unable to Live on their own

Dependent in most Activities of Daily Living

Incontinent of Bladder and Bowel

Stage 7 marks end stage dementia pathway Progressive Debility

Loss of ability to speak, ambulate, and interact with environment

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Stage 6 Cognitive and Behavioral Changes

Severe Cognitive DeclineDeficits evident and widely vary; may include:

Unaware of current life events:

spouse name, dates, season Difficulties bathing, dressing, toilet, transfer, continence, feeding

Daily routine and sleeping patterns disturbed

Wandering away from home or caregiver

Stage 7 Cognitive and Behavioral Changes

Very Severe Cognitive DeclineStage when patient may be appropriate for hospice

Deficits are severe and generally include: Loss of verbal abilities – may grunt, groan

Incontinent – loses control of bladder/bowels

Loss of psychomotor skills like walking, sitting up and smiling

Sleeps longer and more often

Generalized and cortical neurological signs and symptoms are present: Problems with swallowing Visual hallucinations

What Does this Mean?

Alzheimer’s Disease Is A Terminal Diagnosis!

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Death and Dementia

Generally, death is due to a complication, commonly infection.

Aspiration Pneumonia

Infected decubitus ulcer (associated osteomyelitis, sepsis, etc.)

UTI• These are the proximate causes of death. • Alzheimer's dementia is the primary cause of death

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Treatment of Proximal Causes of Death

Enhance patient and family comfort Antibiotics (When appropriate)

Feeding tubes in rare cases

IV hydration (When appropriate)

Wound management:

prevention (frequent turning) debridement Wound Vac

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Dementia Hospice Eligibility is Based on Decline

Cognitive decline: FAST score of 7, confusion, agitation

Functional decline: Increased Dependence in ADL’s,

Nutritional decline: Weight loss despite adequate intake or feeding

tube Clinical decline:

Worsening palliative performance scale, infections

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Functional Decline

Functional Assessment Staging Tool-7 Stages 1. No difficulties

2. Subjective forgetfulness

3. Decreased job functioning and organizational capacity

4. Difficulty with complex tasks, instrumental ADLs

5. Requires supervision with ADLs

6. Impaired ADLs, with incontinence

7. A. Ability to speak limited to six words

B. Ability to speak limited to single word

C. Loss of ambulation

D. Inability to sit

E. Inability to smile

F. Inability to hold head up

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Nutritional Decline

Difficulty swallowing or refusal to eat Caloric intake cannot be maintained

Patient/family refuses artificial nutritional support

If patient is already receiving artificial nutritional support Weight loss > 10% of normal body weight

Decreasing Body Mass Index (BMI) <22 kg/m2

Decreasing mid-arm muscle area (MMA)

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Clinical DeclinePatient has had one or more of the following in the last 6-12

months: Aspiration pneumonia

Urinary tract infections

Blood infections (sepsis)

Pressure ulcers: Stage III or IV

Recurrent fevers, after antibiotics

Weight loss

Comorbid conditions: CHF, CVD, COPD, RLD, DM, CKD, Malignancy

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Benefits of Hospice

Physical , spiritual and emotional symptoms are much better managed.

Allows patient to remain at home / LTC

Hospice staff (physician, nurse/CM, SW, Chaplain, HHA, Volunteer)

Comfort and dignity

DNR/DNI/DNH (note that none are required for hospice care)

Bereavement for surviving family/friends

Patients on hospice often live longer than they otherwise would.

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Living Longer Through Hospice

Average length of hospice stay Primary Diagnosis of Alzheimer's increased from 67 days

(1998) to 106 days (2009)

Primary Diagnosis of Non Alzheimer’s Dementia increased 57 days (1998) to 98 days (2009)

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Benefits of Hospice

Keeps patients in their home

Home health aide Allows patient to remain at facility/home Provides hands on experience for

staff/caregivers in caring for the terminally ill Benefits the physician

Focus Symptom control Goals of care Care of the terminally ill

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Patient Case

80 y/o female, lives alone, known with AD for 8 years, recently hospitalized for aspiration pneumonia

ADLs: dependent, with urinary incontinence

Unable to ambulate and speech limited to 1-2 words (FAST 7C)

Weight loss of >10% last 6 months

Family’s goal is comfort, patient was moved to a nursing home and referred to hospice

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