The National AlzheimerThe National Alzheimer’’s s Project Act (NAPA)-Project Act (NAPA)-

a national strategic plan to address the a national strategic plan to address the AlzheimerAlzheimer’’s crisis.s crisis.

Malgorzata Bach M.D.Malgorzata Bach M.D.

Memory Clinic at the Brain and Spine CenterMemory Clinic at the Brain and Spine Center

Rockford, ILRockford, IL

1/18/121/18/12

The National Alzheimer’s Project Act (Public Law 111-375)

Jan 2011

• An annually updated national plan submitted toCongress on how to overcome Alzheimer’s.

• Annual recommendations for priority actions toboth improve health outcomes for individualswith Alzheimer’s and lower costs to families andgovernment programs.

• The annual evaluation of all federally fundedefforts in Alzheimer’s research, care and services,as well as their outcomes.

• The creation of an Advisory Council onAlzheimer’s Research, Care and Services.

Alzheimer's News 11/8/11Alzheimer's News 11/8/11

Report captures insights on challenges a national AlzheimerReport captures insights on challenges a national Alzheimer’’s plan s plan must addressmust address

MethodologyMethodology

The Alzheimer's Association hosted a The Alzheimer's Association hosted a nationwide public input campaign nationwide public input campaign (43,000 participants):(43,000 participants):

1.1. 3 national input sessions (Washington D.C.,Chicago,San 3 national input sessions (Washington D.C.,Chicago,San Francisco)- May and August 2011Francisco)- May and August 2011

2.2. 132 public input sessions-July-October 2011132 public input sessions-July-October 2011

3.3. Online submission to Online submission to www.alz.org/napa

4.4. Telephone Town Hall input sessions-August 4 2011Telephone Town Hall input sessions-August 4 2011

10 Leading issues that NAPA must address:10 Leading issues that NAPA must address:

1. A lack of public awareness1. A lack of public awareness 2. Insufficient research funding2. Insufficient research funding 3. Difficulties with diagnosis3. Difficulties with diagnosis 4. Poor dementia care4. Poor dementia care 5. Inadequate treatments5. Inadequate treatments 6. Specific challenges facing diverse communities6. Specific challenges facing diverse communities 7. Specific challenges facing those with younger-7. Specific challenges facing those with younger-

onset Alzheimeronset Alzheimer’’ss 8. Unprepared caregivers8. Unprepared caregivers 9. Ill-equipped communities9. Ill-equipped communities 10. Mounting costs10. Mounting costs

Understanding AlzheimerUnderstanding Alzheimer’’s disease crisis: National s disease crisis: National epidemicepidemic

5.4 million Americans have Alzheimer5.4 million Americans have Alzheimer’’s todays today By 2050 as many as 16 million Americans will By 2050 as many as 16 million Americans will

have ADhave AD 1:8 people age 65 and older have AD1:8 people age 65 and older have AD Nearly half of people over 85 have ADNearly half of people over 85 have AD Someone new develops AlzheimerSomeone new develops Alzheimer’’s every 69 s every 69

secondsseconds AD is the sixth-leading cause of death in the US, AD is the sixth-leading cause of death in the US,

and yet it is the only cause among the top 10 and yet it is the only cause among the top 10 without a way to prevent, cure or slow its without a way to prevent, cure or slow its progression.progression.

Understanding AlzheimerUnderstanding Alzheimer’’s disease crisis: Economic s disease crisis: Economic costscosts

In 2011, caring for those with AlzheimerIn 2011, caring for those with Alzheimer’’s will cost s will cost $183 billion ( $11 billion more than last year).$183 billion ( $11 billion more than last year).

By 2050 the cost will increase to trillion and the By 2050 the cost will increase to trillion and the Medicare spending will increase nearly 600%, and Medicare spending will increase nearly 600%, and Medicaid spending will increase nearly 400%. Medicaid spending will increase nearly 400%.

1. Lack1. Lack of public awareness of Alzheimerof public awareness of Alzheimer’’s s diseasedisease

““ Nearly everyone that I come in contact with has Nearly everyone that I come in contact with has no understanding of what is like to have no understanding of what is like to have AlzheimerAlzheimer’’s. When I describe anything that goes s. When I describe anything that goes on with my mother, they are always surprised.on with my mother, they are always surprised.””--Lake Isabella, MILake Isabella, MI

““ At times, some doctors implied that we should At times, some doctors implied that we should not talk with others about my husbandnot talk with others about my husband’’s s condition, as though it was something to be condition, as though it was something to be ashamed ofashamed of””-Tulsa, OK-Tulsa, OK

2. Insufficient research funding2. Insufficient research funding

““This is what frustrates me the most. We live in a country This is what frustrates me the most. We live in a country where we spend millions of dollars for our favorite sports where we spend millions of dollars for our favorite sports teams but canteams but can’’t spend the same money to find a cure for t spend the same money to find a cure for this disease.this disease.””-Dallas, TX-Dallas, TX

““An AlzheimerAn Alzheimer’’s disease diagnosis is worse than stage 4 s disease diagnosis is worse than stage 4 malignant cancer disease-with Alzheimermalignant cancer disease-with Alzheimer’’s there is NO s there is NO hope of beating the adds….hope of beating the adds….””-Mechanicsburg, PA-Mechanicsburg, PA

““Most people affected by the disease find a way to meet Most people affected by the disease find a way to meet the challenges, with or without public support. But they the challenges, with or without public support. But they cancan’’t find the cure. That takes qualified researchers. Public t find the cure. That takes qualified researchers. Public investment in research should be job one.investment in research should be job one.””-Moline, Il-Moline, Il

3. Difficulties with detection and diagnosis3. Difficulties with detection and diagnosis

““ It took about eight years of chasing symptoms It took about eight years of chasing symptoms before we were given a diagnosisbefore we were given a diagnosis””-Tempa, FL-Tempa, FL

““ There is tremendous confusion when people go There is tremendous confusion when people go out to the hospital. Hospitals seen to want to re-out to the hospital. Hospitals seen to want to re-diagnose what has already been established. This diagnose what has already been established. This can be helpful, but sometimes it just gets out of can be helpful, but sometimes it just gets out of control. I had to repeat, repeat, repeat medical control. I had to repeat, repeat, repeat medical histories over and over and over, and it just gets histories over and over and over, and it just gets exhausting.exhausting.””-New York, NY-New York, NY

4. Poor dementia care4. Poor dementia care

““ WhatWhat’’s out there now is a patchwork of people s out there now is a patchwork of people and agencies who donand agencies who don’’t know who else is out t know who else is out there or what services they provide. Itthere or what services they provide. It’’s a s a nightmare, and it is no better now, when I am nightmare, and it is no better now, when I am trying to take care of my mother, than it was 15 trying to take care of my mother, than it was 15 years ago when I was my grandfatheryears ago when I was my grandfather’’s caregives caregiver.r.””-Hebron, IN-Hebron, IN

5. Inadequate treatments5. Inadequate treatments

““ Treatments for AlzheimerTreatments for Alzheimer’’s disease? WHAT s disease? WHAT treatments? This is the forgotten disease, treatments? This is the forgotten disease, literally. You hear about support for every other literally. You hear about support for every other disease but Alzheimerdisease but Alzheimer’’ss””.-Red Bank, NJ.-Red Bank, NJ

““The distinctive challenge is that the doctors are The distinctive challenge is that the doctors are stumped. Itstumped. It’’s basically a trial and error system, s basically a trial and error system, and they just try different drugs to see what and they just try different drugs to see what works and what doesnworks and what doesn’’t.t.””-Simi Valley, CA-Simi Valley, CA

6. Specific challenges facing diverse communities6. Specific challenges facing diverse communities

““ People from diverse ethnic communities are not People from diverse ethnic communities are not properly diagnosed because of socioeconomic, properly diagnosed because of socioeconomic, language and cultural barriers. Early diagnosis language and cultural barriers. Early diagnosis and available treatments and care options are and available treatments and care options are helpful for individuals affected with the disease, helpful for individuals affected with the disease, especially during early-stage. Most interventions especially during early-stage. Most interventions and treatment for Alzheimerand treatment for Alzheimer’’s disease patients s disease patients from the Latino community, for example, take from the Latino community, for example, take place at advanced stage of the disease process.place at advanced stage of the disease process.””--Philadelphia, PAPhiladelphia, PA

7. Specific challenges facing those with younger-onset 7. Specific challenges facing those with younger-onset AlzheimerAlzheimer’’s.s.

““ My biggest obstacle for the past three years of My biggest obstacle for the past three years of taking care of my now 50 year-old sister is her taking care of my now 50 year-old sister is her age. We need more programs available for the age. We need more programs available for the younger ones affected by the disease. I am in younger ones affected by the disease. I am in shock at how many programs turned us away, shock at how many programs turned us away, including housing, daycare, in-home care, etc., including housing, daycare, in-home care, etc., because of her age. Apparently my sister is not because of her age. Apparently my sister is not old enough to have Alzheimerold enough to have Alzheimer’’s!s!””-Chester, MA-Chester, MA

8. Unprepared caregivers8. Unprepared caregivers

““ It is hard enough to help a loved one who It is hard enough to help a loved one who is confused when you are confused is confused when you are confused yourself about how best to help them.yourself about how best to help them.””--Green Bay, WIGreen Bay, WI

9. Ill-equipped communities9. Ill-equipped communities

““ How do you pick up a 200-pound man? ThatHow do you pick up a 200-pound man? That’’s s how much my husband weighed. I had to put him how much my husband weighed. I had to put him in a home when I could no longer move him.in a home when I could no longer move him.””--Sequim, WASequim, WA

10. Mounting costs of care10. Mounting costs of care

““ Most insurance wonMost insurance won’’t cover just custodial care t cover just custodial care and personal care assistance, but this is what is and personal care assistance, but this is what is disabling and killing the caregivers of these disabling and killing the caregivers of these patients. Even long-term health care benefits patients. Even long-term health care benefits cover this partially, and most people doncover this partially, and most people don’’t have it t have it due to the prohibitive costs of the plans availabldue to the prohibitive costs of the plans available.e.””-Laguna Hills, CA-Laguna Hills, CA