UNDERSTANDING

ALZHEIMERS DISEASE:

Malaika K. Singleton, Ph.D.

Presentation to the Alzheimers Disease and Related
Disorders Advisory Committee
California Health & Human Services Agency
September 18, 2013

OUTLINE
Origin of Report
Part 1:
Alzheimers Disease: Diagnosis, Prevention, and Treatment
Part 2:
Alzheimers Disease in California: The States Changing
Demographics,
the State Plan, and Other Resources to Address
Alzheimers
Disease
Part 3: The
Federal Response to Alzheimers Disease: A National Plan to
Prevent and
Effectively Treat Alzheimers Disease by 2025

ORIGIN OF REPORT
enate Office of Research
Nonpartisan office established in 1969 to serve the
research needs of the Senate
Respond to research requests from member offices and
committees
Responses include e-mail, memorandums, briefing
papers, and published reports
Prepare background info for the Senate Rules Committee
to review for the confirmation of Governor appointees to
state agencies, boards, and commissions
I volunteered to write this report while a Science and
Technology Policy Fellow in 2010
Legislative interest and sponsorship for investigating the
use of antipsychotic drugs in nursing homes

PART 1: ALZHEIMERS DISEASE: DIAGNOSIS,

PREVENTION, AND TREATMENT
efinitions and Background
Dementia
Alzheimers Disease (AD)
Risk Factors & Prevention

ew Criteria for Diagnosis: Three Stages of AD

Preclinical
Mild Cognitive Impairment
Dementia Due to Alzheimers Disease

ow Is AD Treated?
FDA-approved drugs
Non-pharmacological approaches
Antipsychotics

DEMENTIA
ascular dementia

Multi-infarct, post-stroke dementia

Impaired judgment and ability to plan

ementia with Lewy Bodies (DLB)

Alpha-synuclein aggregates

Sleep disturbances, hallucinations, motor problems

rontotemporal lobar degeneration (FTLD)

Front and side regions of the brain

Changes in behavior, personality, difficulty with language

ixed dementia

arkinsonss disease

Problems with movement; similar dementia to DLB or AD

Alpha-synuclein aggregates

reutzfeldt-Jakob disease

Infectious, misfolded protein (prion) causing malfunction

Impaired memory, coordination, and behavioral changes

Alzheimers Disease Facts and Figures in California, 2009

ormal pressure hydrocephalus

Build-up of fluid in the brain; difficulty walking,

memory loss, and urinary incontinence

ALZHEIMERS DISEASE
AD Hallmarks/Biomarkers
M

ost common type of dementia (60 80%

of cases)
A
progressive and ultimately fatal brain

disorder characterized by memory loss

(recent events), behavioral changes, and loss

of other functions, including language,

decision-making, walking, and swallowing.

Coloradodementia.org
5

th

leading cause of death in CA as of 2010,

after heart disease, cancer, cerebrovascular

Biomarkers = naturally occurring, measurable

substances that can reliably predict the
presence, absence, and severity of disease.

disease, and respiratory disease

RISK FACTORS FOR AD

Age
Prevalence doubles every 5 years beyond age 65
Prevalence reaches 50 percent for those 85 and over
However, AD is not normal aging, and evidence suggests that
a healthy lifestyle, higher levels of education, cognitive
activity, and other factors could prevent some cases of AD.
Inherited Genetic Factors
Mutations in genes involved in amyloid beta processing (seen
in familial early onset cases)
Variation in a gene (apolipoprotein) that produces a protein
essential for clearing cholesterol and other molecules out of
the bloodstream seen in the general population (sporadic
AD cases)

NEW CRITERIA FOR AD DIAGNOSIS

In 2011, the criteria were updated for the first time in 27
years since the criteria was initially established in 1984.
Guidelines establish 3 stages of the disease with a
spectrum between and within each stage.
Guidelines emphasize new research methodologies and
provide a framework for studying and characterizing the
disease in earlier stages; critical for prevention and
treatment.

THREE STAGES OF AD
Preclinical AD
Can last up to a decade or more before
any symptoms of memory loss and
cognitive dysfunction are apparent
Undetected AD hallmarks revealed
during autopsy
Now used as biomarkers to diagnose
living individuals

Sperling et al., 2011

From a 7/18/2013 Sacramento Bee article titled,

Some Sense Signs of Disease
Some people complain of memory problems but
perform well on neuropsychological and memory
tests
Research suggest they are more likely to have AD
pathology and develop MCI (56% more likely to be
diagnosed in one study) and dementia later
New category considered, Subjective Cognitive
Decline

Mild Cognitive Impairment

Concerns and evidence of cognitive
impairment
Preservation of independence and social
and occupational functioning
Symptoms mild enough to rule out
dementia
Dementia Due to AD
Substantial declines in cognition and
behavior that affect the ability to
function independently

TOOLS USED IN THE DIAGNOSIS

OF MCI AND AD
Individual/Informant Reports

Positron Emission Tomography (PET)

Cognitive, Episodic Memory, and Neuropsychological testing

Brain Imaging
Genetic Testing
Cerebrospinal fluid
Amyloid
Less in the CSF, more in the brain = evidence of
AD
Tau
More in the CSF, less intact in the brain =
evidence of AD

Grundman et al., 2013

Magnetic Resonance Imaging (MRI)

Blood test for miRNA (novel; more research needed)

Regulates gene expression; 12 involved in proper

development of neurons and nervous system
Can differentiate between healthy, AD, and other
diseases
www.mayo.edu

10

HOW IS AD TREATED?
California Workgroup on Guidelines for Alzheimers
Disease Management recommends:
Pharmacology to treat cognitive decline and memory
loss
Appropriate structured activities for recreation and
exercise
Nonpharmacological approaches to address changes in
mood and behavior, followed by pharmacological
approaches, if necessary
Treatment for comorbid (coexisting) conditions
End-of-life care

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TREATING AD: FDA-APPROVED

DRUGS
Five FDA-approved drugs to temporarily slow the worsening of
memory loss and cognitive decline
Acetylcholinesterase Inhibitors
Donepezil (Aricept), galantamine (Razadyne), rivastigmine
(Exelon), and tacrine (Cognexdiscontinued in the U.S.)
Help maintain the brains level of acetylcholine, a
chemical involved in memory
N-methyl-D-aspartate (NMDA) receptor antagonist
Memantine (Namenda)
Blocks glutamate activity (a chemical involved in
learning and memory) to prevent excitotoxicity in the
brain

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NON-PHARMACOLOGICAL
APPROACHES
The recommended first step to treat behavioral and

psychiatric symptoms associated with Alzheimers

Sleep disturbances, verbal and physical outbursts,
hallucinations, and delusions

Environment modification, task simplification,

appropriate activities, and seeking support from

social services or support organizations
Example: Modifying day/night time activities and

behaviors to address sleep disturbances

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ANTIPSYCHOTIC DRUGS
Suggested last resort to treat behavioral and psychiatric
problems
Doctors have discretion to prescribe off-label
Serious side-effects (FDA black-box warning) adverse
cerebrovascular events and increased risk of death in the
elderly
Some modest benefits based on some clinical trials, but
more research is needed due to safety and efficacy concerns

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PART 2: ALZHEIMERS DISEASE IN CALIFORNIA: THE STATES

CHANGING DEMOGRAPHICS, THE STATE PLAN, AND OTHER
RESOURCES TO ADDRESS AD
Californias Demographics
Challenges

Caregivers
AD & Dementia: Medi-Cal Costs
Health Care Costs
Additional Challenges

State Plan

Goals and Recommendations for 20112021

Resources

Alzheimers Disease Centers

California Institute for Regenerative Medicine
Other Programs and Services

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CALIFORNIAS DEMOGRAPHICS
Currently an estimated

480,000 cases or 11.2% of

those age 65 and over
Estimated 37.5% increase

in AD cases between 2010

and 2025, in comparison
to a 9% increase between
2000 and 2010

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CHANGES IN CA DEMOGRAPHICS
4.2 million seniors (age 65 and over) and one-tenth of
the nations AD patientsmore than any other state
The first wave of baby boomers (born between 1946
1964) turned 65 in 2011, the age when the likelihood
for AD begins to double every five years
While Caucasians will see the largest absolute growth
in AD cases, the proportional increase relative to the
entire Caucasian population will not be as steep as that
seen in other ethnic groups

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CA DEMOGRAPHICS AND
DISPARITIES
AD cases are estimated to triple among Latinos and
Asians and double among African Americans (age 55
and older) by 2030
Large number of baby boomers and social, health,
environmental, and genetic risk factors
Education levels
Chronic health conditions (diabetes and heart
disease)
Access to health care and clinical trials (challenges
include: immigration status, bias in screening and
assessment, and level of comfort with clinician)
Cultural competency issues (i.e. language access)

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CHALLENGES: AD CAREGIVERS
Traditionally the wives or adult daughters of individuals with AD
75% of individuals with AD are cared for at home
Emotional, physical, and financial impacts
Mental health disturbances
Health difficulties
Decline in work productivity and attendance, which impact job
security and benefits

Broader societal and economic impacts as the value of unpaid

care, cost for formal services, Medicare, and Medicaid continue
to rise

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DEMENTIA DOG PROJECT

dementiadog.org

Supported by
Alzheimer
Scotland, the
Glasgow School
of Art, Dogs for
the Disabled,
and Guide Dogs
Fetch medicine
in response to
an alarm
Take items
between the
individual and
caregiver
Relieve stress
for both

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AD AND DEMENTIA:
MEDI-CAL COSTS
According to one estimate (in
2007 dollars), Medi-Cal costs
are 2.5 times greater for
individuals with AD and other
dementias compared to those
without
Costs are driven primarily by
nursing home expenditures,
which are about 3 times
Alzheimers Disease Facts and Figures in California, 2009

greater for AD and dementia

21

CHALLENGES: HEALTH CARE

COSTS
Changes, reductions, and elimination of programs due to the
states recent fiscal crisis
In-Home Supportive Services
Adult Day Health Program to Community-Based Adult Services
Program

Opportunities for reform

Coordinated Care Initiative
The Excellence in Dementia Care Project in San Francisco
Includes full-time dementia support nurse, 24-hour help line,
consultation services, and training existing caregivers for crisis
prevention and to reduce emergencies
~40% reduction in emergency room services and potential for costsavings

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ADDITIONAL CHALLENGES
Long-term care services and support
Ability to pay is an issue since Medicare and private
insurance plans do not cover
Medicare covers limited skilled nursing facility and home
health care services but not respite or custodial care, which is
what many individuals with dementia (and their caregivers)
need

Supplemental policies are limited and expensive

Medi-Cal, which covers skilled nursing facility stays,
including custodial care, has eligibility requirements
(family income and age)

Workforce
Shortage of formal caregivers and health care professionals
with geriatric training

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CA ALZHEIMERS DISEASE
STATE PLAN
10-year action plan
6 categories of goals and
recommendations
Published March 9, 2011
The first of 5, 2-year action plans was
published in June 2011 and focused
on 3 of the 6 goals
Alzheimers Disease and Related
Disorders Advisory Committee and
others within the task force are
assessing the implementation of the
Californias State Plan to Address Alzheimers Disease, 2011

plan

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RESOURCES: CA ALZHEIMERS
DISEASE CENTERS
Since 1985, the state has invested more than $90 million in 10 university-

based centers, which raised over $500 million in federal and private research
funding.
Due to the states recent fiscal crisis, funding was reduced by 50% and

research and data collection were discontinued in 2009.

The centers evaluate a minimum of 100 new patients per year, but

comprehensive, multidisciplinary diagnostic and treatment evaluations were

eliminated; follow-up contact for each newly evaluated patient, complete
follow-up reevaluations for all existing patients, clinical follow-up services,
and long-term follow-up services were discontinued.
Services offered by the centers include: professional training, specialty

referral clinics, education and community services, research funding, and

specialized knowledge provided to committees and task forces.

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RESOURCES: CA INSTITUTE FOR

REGENERATIVE MEDICINE
Established in 2004 following the passage of Proposition

71, the California Stem Cell Research and Cures Initiative.

Prop. 71 provided $3 billion in bond funding for stem cell

research at CA universities and other research institutions

and established a stem cell agency to provide grants and
loans to fund research focused on discovering and
developing cures, therapies, diagnostics, and technologies
to alleviate suffering from disease.
The site currently lists 7 grants targeting Alzheimers

disease for a total of ~$26 million of funding.

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RESOURCES: PROGRAMS & SERVICES

See page 40 of the report for a list of programs
and services offered from the:

Department of Aging
Department of Health Care Services
Department of Social Services
California Health and Human Services Agency

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PART 3: THE FEDERAL RESPONSE TO ALZHEIMERS

DISEASE: A NATIONAL PLAN TO PREVENT AND
EFFECTIVELY TREAT ALZHEIMERS DISEASE BY 2025

ational AD Demographics

ementia Costs to the Nation

egislation and National Plan

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NATIONAL AD DEMOGRAPHICS
Estimated 5.2 million Americans living with AD;
expected to rise to 7 million by 2025
AD is 6th leading cause of death across all ages; 5th
leading cause of death for those over age 65
1 in 3 seniors dies with some type of dementia
Older individuals living with AD could reach an
estimated 13.8 million to 16 million by 2050

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DEMENTIA COSTS TO THE

NATION (RAND STUDY)

Formal and informal caregiving cost =

$159 billion to $215 billion in 2010
Expected to reach $379 billion to $511
billion by 2040
75% to 84% due to nursing home and
home-based LTC, rather than medical
services

Direct Care Cost

Dementia = $109 billion (estimated
cost in 2010)
Heart Disease = $102 billion (in 2010
dollars)
Cancer = $77 billion (in 2010 dollars)

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FEDERAL LEGISLATION &

NATIONAL PLAN
National Alzheimers Project Act
Signed into law in 2011
Requires the creation of a national plan to address AD and coordinates AD efforts
throughout the federal government
Established the Advisory Council on Alzheimers Research, Care, and Services
Charged with holding quarterly public meetings and producing an annual report
First report with set of recommendations was released in April 2012 and was
updated in January 2013
National Plan to Address Alzheimers Disease (released in May 2012 and updated June 2013)
Goal 1: Prevent and Effectively Treat AD by 2025
Goal 2: Enhance Care Quality and Efficiency
Goal 3: Expand Supports for People with AD and Their Families
Goal 4: Enhance Public Awareness and Engagement
Goal 5: Improve Data to Track Progress
Immediate Actions Taken (in 2012): Increased NIH funding for AD research and clinical trials

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2013 UPDATE TO NATIONAL PLAN

Identified actions completed, updated, and new

actions to meet the plans goals

Example (Completed): Review evidence on care
coordination models for people with Alzheimers disease
(report is scheduled to be released in August 2013)
Example (Updated): Regularly convene an Alzheimers
disease research summit to update priorities
First held in May 2012, second planned for 2015

Example (New): Develop and disseminate a unified

primary care Alzheimers disease curriculum
Will involve partnering with Alzheimers Disease Centers
(ADCs)

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SUMMARY HIGHLIGHTS
AD diagnosis and treatment is evolving due to
medical advancements and ongoing research
State, federal, and local resources available
Coordination is key and is a shared goal

State and National Plan to Address AD (and San

Francisco)
Both being continuously evaluated and updated

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REFERENCES
Alzheime

rs Disease Facts and Figures in California, 2009

http://www.alz.org/cadata/fullreport2009.pdf

2013

Alzheimers Disease Facts and Figures

http://www.alz.org/downloads/facts_figures_2013.pdf

Some

Sense Signs of Disease, Sacramento Bee, July 18, 2013

http://www.sacbee.com/2013/07/18/5574935/some-sense-signs-of-disease.html?storylink=lingospot

http://de

mentiadog.org/
Amazing

Dog Trained To Help People With Dementia Has Given Them Their Life Back

http://www.huffingtonpost.co.uk/2013/07/15/dementia-dog-training_n_3597470.html

'Dement

ia Dogs' Begin Work, Already Making A Difference With Their Owners In Scotland (PHOTO)

http://www.huffingtonpost.com/2013/07/18/dementia-dogs-help-owners-in-scotland_n_3605444.html?utm_hp_ref=tw

S.F.

Alzheimer's Pilot Results Released

http://www.californiahealthline.org/capitol-desk/2013/7/results-out-for-alzheimers-pilot-plan-in-sf

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REFERENCES CONTINUED
Californias State Plan for Alzheimers Disease: An Action Plan for 2011

2021
http://caalz.org/PDF_files/CA%20State%20Plan.pdf
California Alzheimers Disease Centers
http://cadc.ucsf.edu/cadc/
California Institute for Regenerative Medicine, Alzheimers Disease Fact Sheet
http://www.cirm.ca.gov/about-stem-cells/alzheimers-disease-fact-sheet
Monetary Costs of Dementia in the United States
http://www.nejm.org/doi/pdf/10.1056/NEJMsa1204629
National Alzheimers Project Act
http://aspe.hhs.gov/daltcp/napa/

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