Alzheimer's: The Looming Problem and Our Role in the Solution

Melanie Oblender, MDTNMHO ConferenceApril 26, 2014

OBJECTIVES

Explain Alzheimer’s Dementia and its’ impact on society. 

Identify the burden that Alzheimer’s Dementia has on families and society. 

Describe the role of Palliative Medicine and Hospice in Alzheimer’s Dementia.

Alzheimer’s Dementia

Leading cause of dementia in the world

In the US, there are about 4 million people with AD

Single greatest risk factor for contracting the illness is age.

About 50% of those older than 80 will have the disease

ALZHEIMER’S DEMENTIA

Only way to confirm diagnosis is at autopsy (amyloid plaques and neurofibrillary tangles)

No screening tests, no imaging can make the diagnosis

As the population of the world ages, many predict healthcare disaster of epic proportions

ALZHEIMER’S DEMENTIA

Begins in the limbic area of the brain, which subserves memory

Then moves on to temporal lobe which involves speech and comprehension of speech

Next parietal lobe affected so there is loss of spatial disorientation, difficulty with objects (keys, utensils)

ALZHEIMER’S DEMENTIA

Frontal lobe involvement causes lack of judgment, personality changes, social ineptitude

Late in disease sensorimotor cortex involved and patient becomes immobile and unresponsive

PATIENT with ADMost people know something is wrong before they seek help

Most want to take an active role in care planning

In the early stages, many feel ashamed or embarrassed by memory deficits

Feel guilty about what they know their loved ones will go through

PATIENT with AD

In the early stages, pts have trouble recalling recent events or new people

Later on all memory is lost – they cannot remember their spouses, their children or their life before dementia

They lose the ability to communicate

PATIENT with AD

They are conscious but have no way to interpret the world around them

They live in a world of turmoil among strangers

CAREGIVERSThe family, usually the daughter or wife, shoulders the majority of the care

As the disease progresses, the care givers have increasing mental and physical loads (feeding, dressing bathing, toileting, protecting)

For most caregivers, the hardest thing is to take away the car keys

CAREGIVERS

Many are working hard, get little rest, see their social outlets fade away

High risk for depression and for sudden death

“Alzheimer's disease destroyed my husband, our marriage, finances, emotional well-being and future”

CAREGIVERS

Many caregivers struggle on with limited support and resources trying to avoid what they promised they would never do: put their loved one in a nursing home.

When and if decision is made to do so, family feels guilty

COST of AD to SOCIETY

Bear a large financial burden for AD

2000 overall cost for a person with AD was $30K/ year

2 million people with AD and price was $68 billion

$14 billion was paid by patient and family

Care for AD accounts for 2.1% federal budget

COST of AD to SOCIETY

By 2050, there will be 8 million with AD

Cost of care will exceed $300 billion

Will account for about 10% of the federal budget

In Europe even more concern: Work force is dwindling so fewer will be paying for more

ETHICAL CHALLENGES

What are society’s responsibilities for the frail, vulnerable elderly?

To meet the increased demand for care, should we cut costs by cutting quality?

ETHICAL CHALLENGES

Do we reduce the benefits for those with AD?

Do we institute the “Death Panel”?

Should those with AD be denied certain life sustaining treatments?

Is it just to shift funds away from education, etc. to fund AD?

PALLIATIVE CARE

Canadian Palliative Care Association

Palliative care is a philosophy of care. It is

the combination of compassionate care

intended to comfort, and quality of life support for

individuals and families who are living with life-

threatening illness.

Palliative care may be combined with therapy

aimed at reducing or curing the illness, or it may be

the total focus of care.

GOALS of PALLIATIVE CARE

Focus is on the person not the disease

Support the family

Affirm life

Begin discussions about how the person/family want to live with the new reality

PALLIATIVE CARE & AD

Referral at the time of dx

Begin to talk about goals of care with a focus on care desired in later stages of AD

Discussions take time and need to be revisited

Invite family and others to participate in talks about goals

PALLIATIVE CARE & AD

Have honest discussions about what patient and family can expect with progression of disease

Manage the symptoms of co-morbid conditions

Day care program so caregiver can remain employed and be assured the pt with AD is safe and cared for

OTHER STRATEGIES

Need more research in cause of AD, in ways to prevent AD and in new drugs

AD is more prevalent and costly than either cancer or heart disease but only receives a small amount for research compared to those diseases

OTHER STRATEGIES

Fund the drugs; it will save us money

More training for those who will care for people with AD in institutions

Pts with AD have more co-morbid conditions than others. These tend to be more serious and costly. Routine physicals and medication review may pick up on medical needs before there is a crisis

SUMMARY

AD is a devastating disease with progressive neurological decline

The incidence of AD is increasing with the aging of our population

Now is the time to begin to think about how to manage this disease and these people so that we can combine quality of care with cost reduction or avoidance

I now begin the journey that will lead me into the sunset of my life

Ronald Reagan

November 5, 1994