1. Alzheimer's: The Looming Problem and Our Role in the Solution Melanie Oblender, MD TNMHO Conference April 26, 2014

2. 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.

3. 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

4. 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

5. 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)

6. 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

7. PATIENT with AD Most 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

8. 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

9. 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

10. CAREGIVERS The 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

11. 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”

12. 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

13. 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

14. 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

15. 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?

16. 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?

17. 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.

18. 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

19. 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

20. 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

21. 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

22. 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

23. 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

24. I now begin the journey that will lead me into the sunset of my life Ronald Reagan November 5, 1994