RECOMMENDATIONS OF THE PUBLIC MEMBERS OF THE ADVISORY
COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
(12 PDF pages)
The United States faces a public health crisis due to the tremendous
physical, emotional, and financial costs of Alzheimers disease and
related disorders (AD). This disease severely impacts the well-being of our
citizens and the economic health of this nation. An estimated 5.4 million
people are living with the disease today, and it is the sixth leading cause of
death. The costs to the health and long-term care systems for people with AD
are estimated to be $200 billion in 2012. Although AD can strike throughout
adult life, people aged 65 and older are at highest risk. As the proportion of
older adults increases dramatically over the next 20 years, it is estimated
that the prevalence of AD will skyrocket to 11-16 million people by 2050,
driving the cost of care to $1.1 trillion for AD in that year alone. Given
these devastating numbers, it is even more disturbing that of the top 10 causes
of death, AD is the only one without a way to prevent, cure, or slow its
progression. This is an intergenerational challenge, affecting all family
members and creating for future generations a fiscal burden of potentially
Although AD research has made a number of new and important discoveries,
we are still not aware of the neurobiological triggers for the changes in the
brain that progressively destroy cognitive function. Furthermore, researchers
have made interesting observations of associations between certain lifestyle
factors and risk for disease, but have not yet discovered interventions that
could delay onset of AD. In fiscal year 2012, the federal government estimates
it will have committed only $498 million at the National Institutes of Health
(NIH) for AD research. This level of resource commitment falls drastically
short of the funding needed to accelerate the pace of research on prevention,
cures, and treatments for AD. Given the devastating health and fiscal impact of
AD in the United States and globally, a creative and robust program of
additional resources for AD research is not only justified but is essential to
the saving of millions of lives and trillions of dollars. We know from spending
on diseases like AIDS, cancer, heart disease, and diabetes that when research
funding is increased, the pace of discovery and breakthroughs accelerates,
resulting in treatments for those with or at risk of acquiring the disease, and
eventually decreasing mortality.
Therefore, we must increase our commitment to resources for research on
AD. A National Plan committed to preventing and effectively treating AD by
2025, should start with a careful evaluation of the level of resources required
to achieve that goal, through research, and improvements in clinical care and
planning for long-term services and supports (LTSS). However, a truly National
Plan must also engage private industry, not-for-profit organizations, states,
and global partners in both the development and execution of a strategic
research and treatment discovery plan and the mobilization of the resources
required to achieve what we hope will become, with this Administrations
leadership, a global goal of preventing and effectively treating AD by 2025.
It is imperative that our health care and LTSS system becomes
dementia-capable. Research to find treatments is crucial, but until we have
those options there is much to do to improve the care that we offer throughout
our health care and LTSS systems. One goal would be that individuals with AD
have the disease detected and diagnosed at an early stage, receive assistance
with care planning, and have access to coordinated and high quality health care
and LTSS throughout the course of the disease. That goal drove us toward
specific recommendations in detection, diagnosis, care across the stages of the
disease, hospitalizations, care transitions, and developing a more robust
workforce that is better trained in dementia care. We are mindful of the
diverse populations and their caregivers who are affected by AD and their
specific challenges, which we tried to address in our recommendations. The
Advisory Council also focused on the needs of the estimated 15 million unpaid
caregivers who are essential to support people with AD. This illness is unique
in its societal, economic and personal toll. Improvements in clinical care and
LTSS can help millions of people now, so the Advisory Council believes
that the resources must be committed to make these meaningful changes.
The Plan must address the millions of people who currently have the
disease, and their caregivers. AARP valued the economic impact of all
caregivers at an estimated $211 billion in 2011. This care is provided at great
risk to their own health and livelihood. Unreimbursed care provides the
backbone of support for people with AD. We know today that much can be done to
address the needs of a person with AD, and we have evidence-based strategies to
support the caregivers. Research has shown that with early detection, caregiver
training and support services people with AD can continue to reside in the
community, with dignity, for up to a year and a half longer than when
caregivers lack training and support. This is just one example of why the plan
must provide for the key elements of support of caregivers and address research
related to caregivers and the impact of caregiving on them. This requires that
public and private resources be coordinated to maximize impact, fill gaps, and
continue to build on what works in states and communities across America. These
efforts need to include health care, public health, aging and social services.
As we face the growing tide of an aging America we must dramatically increase
our efforts in this arena. It is not enough to increase funding for research we
must also focus resources today to: identify the disease early; address
symptoms and co-morbidities effectively; train and support caregivers in
meaningful ways; and build the necessary public and private state and local
systems to accomplish these goals.
With this as a motivation, the National Alzheimers Project Act
(NAPA) was signed into law in January 2011. A part of that legislation required
the creation of the Advisory Council for Research, Care and Services (the
Advisory Council), according to the Federal Advisory Committee Act, to make
recommendations to the Secretary of Health and Human Services (HHS) on the
development of a National Plan for AD. This Advisory Council was selected in
the summer of 2011 and has been meeting to advise the Secretary on the
development of the initial plan. The Advisory Council was also charged with
developing a set of recommendations to the Secretary and Congress, including
additional items that were not included in the plan itself. In order to meet
these objectives, the Advisory Council created three subcommittees: Research,
Clinical Care, and Long-Term Services and Supports.
The National Plan to Address Alzheimers Disease is organized
around five goals:
- Prevent and Effectively Treat Alzheimers Disease by 2025;
- Optimize Care Quality and Efficiency;
- Expand Patient and Family Support;
- Enhance Public Awareness and Engagement; and
- Track Progress and Drive Improvement.
The National Plan proposes strategies to achieve each goal. Under each
of these strategies, it identifies specific actions that HHS or its partners
will take. HHS proposed these actions based on the current resources available
for AD research, care, and LTSS.
To reach the ambitious national goal of preventing and effectively
treating AD by 2025 and to meet the needs of the millions of people with AD and
their caregivers, the Advisory Council believes it essential not to limit our
vision to what can be achieved with existing resources. The Advisory Council
believes that more aggressive action steps are needed to reach that goal and
that more resources are needed than are currently available. As such, a set of
recommendations reflecting the input of the Research, Clinical Care, and LTSS
subcommittees has been generated and is included in this document.
The following recommendations were adopted by unanimous consent by the
11 non-federal members of the Advisory Council on April 17, 2012. We submit
these recommendations for your consideration. Consistent with the National Plan
and the approach used by Congress in NAPA, we use the term
Alzheimers disease, or AD, to refer to Alzheimers
disease and related dementias.
- We support and applaud the goal of the National Plan -- to prevent
and effectively treat AD by 2025.
- We recommend that interim milestones be set, through development
of a clear roadmap of research and treatment discovery priorities and
timelines, to assure continuing and successful progress toward achievement of
this goal. For example, we recommend that an interim milestone be set to make
available to the public by 2020 significant disease-modifying or
substantially-enhanced, symptom-mitigating behavioral or pharmacologic
- While these goals of making new remedies for AD available by 2020
and 2025 are ambitious, they should not be interpreted as favoring
translational drug development over basic discovery. New investment in basic
research and drug discovery must reflect a critical balance between long-term
investment and the urgency of immediate improvements in our nations
public and fiscal health.
- There is an urgent need for annual federal research funding to be
increased to the level needed to fund a strategic research plan and to achieve
the breakthroughs required to meet the 2025 goal. Initial estimates of that
level are $2 billion per year, but may be more. That investment would be
applied to AD research initiatives spanning basic, translational, and clinical
- The Administration, working with the research and business
communities, should develop an overall budget needed to achieve the 2025 goal,
and should propose to Congress and support a rapid ramp up to a minimum $2
billion in AD research funded by NIH. The optimum levels of annual funding
needed to achieve the 2025 goal should be determined in connection with the
preparation of the Presidents budget, and should be reviewed and adjusted
each year based on progress and new developments.
- As part of the strategic research plan mentioned in the National
Plan, we recommend that NIH develop a system of accountability to monitor
progress toward the 2025 goal.
- We recommend that NIH coordinate with other federal agencies to
ensure that overall federal AD funding complements the NIHs investments
and enhances progress towards the goal of preventing and effectively treating
AD by 2025. We also recommend that the strategic research plan identify and
monitor not only existing resources within the federal government, but also new
resources outside the federal government, including new public-private
partnerships, incentives for increased private investment, state-based research
funding, and mobilization of global investments.
- HHS should develop, execute and regularly update a strategic
research plan and priorities to accelerate breakthroughs in AD research. In
addition to research on people with the disease, the strategic research plan
should also include study of caregivers of people with AD and the impacts of
- The process of developing that strategic research plan and
accompanying priorities should be viewed as a shared project of NIH, the Food
and Drug Administration (FDA), and other relevant government agencies; the
academic and corporate research community; industry; and non-governmental
- Given the global scope of the challenge of AD and the
international character of the research enterprise, we recommend that the
strategic research plan be coordinated with the research efforts of other
nations and that stakeholders from other countries with AD plans in place or in
process be included in the planning process.
- The structure of the strategic research plan should be framed
with the National Plan updating process in mind so that issues can be addressed
not only annually, but also in synchrony with the Plan updates and so that
progress can be tracked using potential convening partners for different
- The Director of NIH should monitor the AD research portfolio
across all Institutes and Centers of NIH.
- To address disparities, clinical research studies and activities
aimed at translation of research findings into medical practice and to the
public should include specific targets for outreach to specific populations by
racial/ethnic group, sex, and socioeconomic status, as well as to populations
at high risk for AD (e.g., people with Down syndrome).
- Specific recommendations for recruitment and outreach goals for
diverse populations should, in our view, be integrated into planned AD research
- Resources and formulas for success of NIH-funded
Resource Centers for Minority Aging Research, Alzheimers Disease Research
Centers, and R01 grant awards that have successfully recruited large numbers of
ethnic minorities and socioeconomically diverse people for clinical aging
research can, in our judgment, be leveraged to inform any future recruitment
efforts taken via NAPA initiatives.
- In our view, private and public entities can collaborate to
increase diversity within clinical trial participation through existing and
publically funded prevention registries producing increased identification of
ethnically and socioeconomically diverse people for participation in clinical
studies of AD.
- HHS, in partnership with the research community and industry,
should take steps to accelerate public access to new therapeutic interventions
by compressing the current average time for the process of identification of
therapeutic targets, validation of those targets, development of behavioral and
pharmacologic interventions, testing of efficacy and safety, and regulatory
review, including the following:
- Convening expert advisory panels/conferences to identify genetic,
family history, medical co-morbidities, biomarkers, and clinical features in
asymptomatic persons that are risk or protective factors for AD
neuropathological physiology and ultimately AD clinical symptoms.
- Cataloguing existing AD biological and behavioral marker
initiatives including their current development and review, and identifying
gaps and a plan for addressing them.
- Issuing, upon endpoint approval, of unambiguous guidance on the
use of behavioral and biological markers to industry on their usage.
- The Secretary of HHS, in consultation with academic researchers,
state research coordinators, not-for-profit AD organizations, and the private
sector, including sponsors of investigational diagnostic and therapy trials, by
the end of 2012 should identify and prioritize the action steps needed to
reduce the time for moving therapies from target identification and validation
through clinical development, regulatory review, market approval, and
- The Secretary, in conjunction with NIH and FDA, should increase
targeted public-private partnerships that bolster innovation and regulatory
- As part of the initiative to accelerate public access to new
therapeutic interventions, the Secretary should examine and include as part of
her annual report to Congress and the Advisory Council:
- How HHS uses existing authorities to reduce drug development
barriers and accelerate development of new therapies.
- Immediate steps HHS will take to address any identified drug
development barriers, including regulatory hurdles; patent, intellectual
property, regulatory science, or clinical trial infrastructure weaknesses; and
to advance regulatory science, guidance, and other initiatives under existing
- Additional authorities or other legislative action that may be
needed to accelerate development of therapies and diagnostics.
- Immediate steps to shorten time from market approval to coverage
decision for innovative therapies and diagnostics.
- The FDA should review and periodically report to the Advisory
- Recommendations to further accelerate FDA review processes
without compromising current standards of safety and efficacy.
- The Secretary of HHS should develop a continuing process by which
research priorities aimed at accelerating the delivery of effective treatments
would be set, including input from scientific experts.
- In our view, a joint NIH and industry working group should be
established, which can serve as an opportunity to create a true partnership
between government and industry to inform research priorities.
- In order to accelerate the process of discovery, we recommend
that this working group identify strategies for increasing the standardization,
disclosure, pooling and analysis of pre-clinical, clinical and electronic
- HHS should develop accurate and relevant metrics for assessing the
impact of AD on the United States economy.
- We believe it important to develop a system of accountability for
the achievement of the 2025 goal, including estimates of the impact of
prevention and effective treatment of AD on the United States economy, families
and costs to federal health care programs.
- Identify and rectify the shortcomings of the data needed to
assess the prevalence, costs (financial, fiscal and economic), and deaths
relevant to AD, as well as the impact on caregivers and worker productivity.
- HHS should commit to an effort to maximize private investment in
the development of treatments and improvements in disease monitoring technology
by identifying policies that would encourage private industry to invest
aggressively in disease-modifying interventions, to support technologies that
improve our ability to detect the disease as early as possible, and monitor the
disease accurately so that the effectiveness of interventions can be
- As part of the larger NAPA agenda, we recommend that a process or
mechanism for securing sustained industry input on topics such as measures to
spur discovery and streamline regulatory review, tax, and intellectual property
be established, with a particular emphasis on diminishing the barriers to
sharing both basic scientific and clinical data, and other incentives.
- We believe a strategic use of Small Business Innovation Research,
Small Business Technology Transfer Programs and other co-investment initiatives
can be used to promote advanced research and support from small businesses
engaged in this work.
- Through a joint public-private process, we believe that we can
advance other related actions included under other recommendations (e.g., the
industry engagement with NIH, research prioritization, behavioral and biomarker
and endpoint validation, etc.) that are already known to be of importance to
- Expand funding and incentives for health care providers to become
more knowledgeable about dementia and to encourage individuals to pursue
careers in geriatric specialties.
- Congress should increase funding for the inter-professional
geriatrics education and training programs for health professions students,
faculty, practitioners, direct service workers and family caregivers under
Title VII and Title VIII of the Public Health Service Act.
- Congress should increase funding for loan repayments and other
incentives for those who study geriatrics and gerontology and then work in
- HHS should partner with the medical, nursing, and allied health
profession programs to provide geriatric education offerings in their
- The Health Resources and Services Administration should partner
with a broad array of health organizations to disseminate information to
providers about AD, detection and diagnosis, dementia care throughout the
diseases stages, and support systems available for affected individuals,
caregivers and families.
- State education and health agencies and others should include key
information about AD in all curricula for any profession or career track
- State education agencies, other relevant state agencies, regional
accrediting bodies, and professional organizations should require current
information about AD be included as a condition of approval of any curriculum
or course of study leading to licensure or certification.
- Appropriate organizations should require that current information
about AD be included in all relevant continuing education activity and all
relevant state recertification programs.
- First responders, state and local health and human service
personnel, and others who serve the public (including staff at relevant
federally-funded agencies, such as Area Agencies on Aging and Aging and
Disability Resource Centers), should receive appropriate information and
training regarding AD and the early warning signs of possible cognitive
impairment to assure they can effectively perform their work.
- States should ensure that Paraprofessional Caregivers in every
venue are adequately trained and compensated.
- Mandate that paraprofessional caregivers receive at least 10
hours of dementia specific training from a reliable source.
- Because many of these workers are working multiple shifts at
below subsistence wages, often with few benefits, states should enact policies
that ensure that their hours and pay reflect a fair and living wage.
- Compensation should reflect the completion of a prescribed
- Redesign Medicare coverage and physicians and other health
care providers reimbursement to encourage appropriate diagnosis of AD and
to provide care planning to diagnosed individuals and their caregivers.
- Congress should pass legislation to create Medicare coverage for
a package of services that covers the clinical diagnosis of AD as well as care
planning for the individual and their caregivers.
- This Medicare coverage should include care planning with a family
caregiver even if the individual with the disease is not present.
- In exchange for Medicare reimbursement for this package of
services, physicians and other healthcare providers should be required to
document the AD diagnosis in the individuals medical record.
- Clarify and disseminate information to providers about the
procedures under Health Insurance Portability and Accountability Act with
regard to sharing medical information with caregivers related to dementia,
prognosis, and care planning.
- LTSS systems should refer to a health care provider for diagnosis
whenever someone is admitted to or assessed for eligibility for LTSS and
exhibits signs of cognitive impairment. Providers engaged in diagnosis should
consider the 2011 guidelines for diagnosis.
- Whenever a person exhibits symptoms of cognitive decline, a
diagnosis should be considered using the 2011 guidelines.
- The state lead entity should assure this recommendation is
included in any assessment for eligibility for LTSS.
- Federal agencies should assure that appropriate training
resources are available to health care providers on the use of the guidelines.
- The process of diagnosis should include engaging individual and
family in advance care planning (health, legal, estate, and financial).
- Health care providers involved in diagnosis should include
advance care planning in the health care plan after discussion with the
individual and family members as appropriate.
- Health care providers should have ready access to information for
referral of people diagnosed with AD and their family to community resources
for financial and estate planning.
- The state lead entity for AD should assure that an inventory of
community resources is maintained through appropriate state and local
resources. This should be one of the activities eligible for federal funds as
- HHS should assure that health and related systems funded with
federal resources should improve chronic disease treatment and related services
for people with AD.
- People with AD often have other (multiple) chronic conditions.
Treatment options for persons with AD are limited and prognosis is negatively
affected when individuals have acute flare-ups related to these conditions or
complications, (e.g., stroke, chronic obstructive pulmonary disease, coronary
- Care plans for people with AD should be tailored to their
conditions, especially during recovery and rehabilitation.
- Incorporate training for primary care providers and specialists
regarding the impact of AD on care for co-morbid conditions in existing
pre-service and in-service training curricula.
- Engage professional organizations to develop tools and guidance
for clinicians and social service professionals.
- Engage professional organizations to develop tools for caregivers
to assist with management of multiple chronic conditions and link to the HHS
Framework to Address Multiple Chronic Conditions.
- HHS should develop quality measures and indicators for the
comprehensive care and treatment of individuals with AD.
- The Agency for Healthcare Research and Quality -- in consultation
with the National Quality Forum, the Institute of Medicine, and various
stakeholders -- should develop quality care measures and indicators for
diagnosis, treatment, and care of individuals with AD.
- Over time, these quality measures and indicators should cover:
care in various settings (e.g., physicians offices, hospitals, home care,
nursing home and assisted living facilities, community services, etc.); care
coordination among settings; and transitions between settings, including care
coordination during such transitions.
- The Centers for Medicare and Medicaid Services (CMS) should
implement demonstration projects to study the application of dementia quality
care measures and indicators as they are developed.
- CMS should implement policies for Medicare and Medicaid to embed
the quality measures and indicators in the health care system.
- Assure a robust, dementia-capable system of LTSS is available in
- Every state should identify a state lead entity for AD to
coordinate activity across state agencies and programs in concert with the
- Services should include a full array of culturally and
linguistically competent and evidence-informed or evidence-based programs in
individual and community settings. According to the National Council on Aging,
evidence-based is "a process of planning, implementing, and evaluating
programs adapted from tested models or interventions in order to address health
issues." Evidence-based programs focus on populations -- like older adults
-- emphasizing both prevention and treatment. These programs do not replicate
research, or accessible LTSS for people with AD and their family
- Services for people with ADinclude: outreach; early detection;
diagnostic; care and estate planning; treatment (medical, psychiatric,
pharmacological and social/cognitive interventions such as memory classes);
care/treatment advocacy (e.g., medication management, benefits counseling and
patient navigation); early stage support services; social support services
(e.g., adult day, activity of daily living supports like escorted
transportation, meal preparation, home and personal care assistance, etc.)
supportive housing and home safety assessment/modifications; safety services
(medic-alert, safe return, GPS based programs, etc.); hospital and
community-based end-of-life and palliative care.
- Services for families or caregivers include: outreach; advocacy;
disease and self-care education; psycho-social support groups; supports for
long distance caregivers; caregiver centered dementia care management (such as
T-Care); legal and financial (including family care tax relief policies and
benefits counseling) services; a continuum of respite services; and supportive
workplace family care policies.
- Services should utilize innovative gap filling and financing
- CMS should provide guidance to all states on adding adult day
services as a state optional service under Medicaid.
- Services should encourage development and provide LTSS linkages
to state, local; and private supportive housing resources.
- Services should encourage development and implementation of
dementia-capable transportation services.
- Public payments for services should reflect a living wage and
recognize any special training for dementia-capable services.
- HHS should provide federal funds to support a state lead entity in
every state and territory. This entity would coordinate available public and
private LTSS, conduct service gap analysis, identify opportunities for
efficiency, and enable ongoing stakeholder input to address needs across all
sectors and systems.
- The state lead entity will be responsible for: coordinating
public and private resources and programs; building capacity for epidemiology;
evaluating programs and improving quality; maximizing the positive impact of
services for people with AD and their caregivers; reducing duplication;
coordinating public awareness; and assuring that evidence-based, high quality
services are available in their state.
- HHS should identify an appropriate office or operating division
to manage funds for the identification of state lead entities.
- The identified office should develop standards for the state lead
entity that should be met as a condition of funding.
- Understanding that states are organized differently, standards
should be flexible enough to accommodate various agencies as lead, based on
what is appropriate for each state.
- Governors should be enlisted to designate the lead entity for
their state, and that designation should carry authority to impact program
activity across agency lines when necessary.
- States should be engaged to draft (or update) a state plan to
address AD, in concert with the National Plan.
- HHS should fully fund the costs of cognitive impairment and
caregiver surveillance through the Behavioral Risk Factor Surveillance System
in every state.
- Practice recommendations for care in every setting should be
embedded in CMS federal and state surveillance and quality improvement
- Appropriate federal agencies should engage broad groups of
stakeholders in the development of best practice guidelines for all
long-term care settings (home, supportive housing, rehabilitation facilities,
nursing home, and hospital).
- These guidelines should be widely disseminated.
- These guidelines should be embedded in all federal and state
surveillance and quality improvement systems.
- Practice recommendations should include the appropriate
management of AD and common co-morbid physical and behavioral health
- Recommendations for end-of-life or palliative care should be
incorporated into all CMS surveillance and quality improvement systems.
- Because at this time AD is a terminal illness marked by
diminishing capacity, use of palliative care and desires regarding end-of-life
care should be discussed and documented as early as practical in the disease
- Federal and state surveillance and quality improvement systems
should all include measures assuring this communication has taken place in a
- HHS should provide grants through the Center for Medicare and
Medicaid Innovation (CMMI) for medical home pilot projects specifically
targeted at improving medical management for individuals with AD, including
management of co-existing medical conditions and coordination with family and
community care providers in all settings (in-home care, long-term care, and
inpatient hospital care).
- Within one year, CMMI should provide grants for medical home
pilot projects specifically targeted at Medicare beneficiaries with AD.
- Within one year, CMMI should provide grants for medical home
pilot projects specifically targeted at dual eligible individuals (those
seniors eligible for both Medicare and Medicaid) with AD.
- CMS should incorporate those projects that prove successful into
the system-wide Medicare program.
- HHS should form a blue ribbon panel of experts to recommend one or
more models of palliative care for people with advanced dementia, including
eligibility criteria and financing mechanisms, and provide grants through CMMI
to implement and evaluate the models.
- HHS should convene a blue ribbon panel to recommend one or more
models of palliative care for people with advanced dementia.
- Such models should include the eligibility criteria for receiving
such care and financing mechanisms on how to pay for it.
- CMMI should provide grants to study the various models of
palliative care recommended by the blue ribbon panel.
- HHS should create a specific grant round of pilot projects through
CMMI to implement and evaluate ways to reduce potentially preventable emergency
department visits and hospitalizations for individuals with AD, including those
from home, assisted living facilities, and nursing homes.
- Develop a public-private partnership to develop and evaluate ways
to improve hospital care, care coordination, and transitions of care for people
with AD, including training approaches and proposed quality measures.
- Within one year, CMMI should create a specific grant round
focused exclusively on pilot projects and demonstrations to reduce preventable
hospitalizations and length of hospital stays among individuals with AD.
- Funded projects should include at least one project that targets
individuals from diverse communities.
- The grant round should also consider funding projects aimed at
reducing re-hospitalizations among those with AD by, for example, testing
models of transitional care.
- CMS should incorporate those projects that prove successful into
the system-wide Medicare program.
- Within one year, HHS should, in partnership with hospital and
nursing associations, develop and evaluate ways to improve hospital care for
people with AD.
- Within one year, CMS should gather findings from Community-Based
Care Transitions Programs to disseminate widely and consider policy and
reimbursement changes to Medicare that would make transitions safer and less
- HHS and state lead entities should partner to assure access to the
full array of LTSS for special and emerging populations of people with AD
including younger people, people with intellectual disabilities such as Down
syndrome, and others.
- HHS and state lead entities should also assure supports are
tailored for caregivers/family members of special and emerging populations.
- All guidelines and quality improvement efforts should include
special and emerging populations.
- Implementation efforts should be coordinated with similar efforts
directed at specific populations.
- All Older Americans Act Title III services should be made
available to those with younger-onset AD.
- The Administration on Aging (AoA) should track and report use of
Title III services, especially under the National Family Caregiver Support Act,
by those with younger-onset AD to assure that data is readily available on
related costs for future planning.
- Recommended use of federal funds ($10.5 million) currently
proposed for AoA.
- HHS (AoA) should use the $10.5 million for state grants to seed
the development of state action plans that maximize use of public and private
resources to support services.
- Governors should designate the state lead entity and commit to
sharing a state plan with recommendations for action publically.
- State agencies and relevant partners should be included.
- Match should be required to expand impact.
- This program should be expanded in future years with additional
- Estimated funds necessary to fully fund all states = $85 million.
- Funding for the Alzheimers Disease Supportive Services
Program (ADSSP) should be restored to the FFY 2003 level of $13.4 million.
- This program supports evidence-based and promising practices in
supporting people with AD and their caregivers in the community.
- HHS, state lead entities and partners can use the lessons learned
from this program to spread the availability of valuable services and should
develop a long-range plan to convert ADSSP from a demonstration program to a
program that provides widely-available services based on the findings from the
- Fully fund caregiver support under AoA.
- AoA currently has the National Family Caregiver Support Program,
a component of which can be expanded to better meet the needs of caregivers of
individuals with AD.
- These improvements can result in mitigation of other system
- This program is currently dramatically underfunded and therefore
unable to meet the needs of this growing population.
- Fully funding this program can enhance other related efforts to
improve quality of life for people with AD and their caregivers.
- We recommend that program funding be doubled to move toward full
- HHS and state lead entities should assure that caregiver physical
health/behavioral health risk is assessed and addressed regularly. Caregiver
illness and mortality contribute to the enormous personal and financial cost of
- The health and well-being of a caregiver has a direct impact on
the health and quality of life of a person with AD.
- Whenever a caregiver accompanies a person with AD to a health
care appointment; emergency department visit; or hospitalization, the attending
health care provider should ask if the caregiver is well for the purpose of
information and referral to care if needed.
- HHS should explore adding a Health Effectiveness Data and
Information Set question to assess that this is occurring.
- Appropriate federal agencies and state lead entities should
assure that the importance of this action is incorporated into training of
health care providers and incorporated into education messages for the
- Caregiver needs assessments should be made an explicit permitted
use of federal funds by states under the National Family Caregiver Support
- The Office of the National Coordinator, in partnership with the
private sector, should assure that development of health information technology
includes tools for caregivers to assist in the care of the person with AD to
address dementia and multiple chronic conditions as well as maintain their own
mental and physical health.
- Caregivers should have access to reminder tools; communication
methods among caregivers; home monitoring tools; and enhanced decision supports
that help instill confidence and reduce isolation.
- HHS should launch a nationwide public awareness campaign to
increase awareness and to promote early detection of AD.
- The Centers for Disease Control (CDC) should be the lead entity,
responsible for coordinating a public awareness campaign with relevant
federal agencies and other stakeholders in a public-private partnership to
increase awareness of AD and to promote early detection and diagnosis.
- CDC should partner with professional groups to launch a parallel
awareness campaign targeted at physicians and other health care professionals
about the benefits of early detection and diagnosis of AD.
- Both campaigns should include promotion of Medicares Annual
Wellness Visit as a vehicle for health care professionals and patients to talk
about memory problems and cognitive function.
- The campaigns should include specific efforts in diverse
communities and populations, including younger-onset individuals and persons
with intellectual disabilities.
- CDC should involve state, county, and local public health
departments in the campaigns and encourage them to launch public awareness and
early detection campaigns of their own.
- The Administration should expand and enhance meaningful
coordination with global partners and move forward to establish a Global
Alzheimer's Action Plan to respond to the global scope of the problem.
- Moving that objective forward might start with convening a
meeting of all nations or regions with National or Regional Alzheimer's Plans
in place or under development by 2013 in order to compare approaches and
identify mechanisms to foster global coordination and progressively address the
- The responsibility for such an initiative would require the
identification of a single high-level United States official as the point
person for the National Plan and appointment of that person to represent the
nation as part of an ongoing dialogue with global counterparts.
- We believe that such a Global Alzheimers Action Plan can be
built upon existing global collaborative research initiatives and lead to
greater global collaboration and coordination of research funding on a global
- Any Global Alzheimers Action Plan should foster ongoing
international dialogue and potential coordination on AD regulatory review and
- We recommend that the Administration designate specific Offices
and officials within the White House and the Office of the Secretary of HHS
with responsibility and accountability for effective implementation of, and
timely, transparent reporting on all aspects of the implementation of the
National Plan, including responsibility for issuing statutorily required
reports to Congress on behalf of the Secretary, reports to the Advisory
Council, and other reports as warranted.
- The designated Office within the White House should be
responsible for adequate monitoring across agencies and the designated Office
within the Office of the Secretary of HHS should be responsible for monitoring
- We believe it important to develop a system of accountability for
the achievement of the 2025 goal based on quantifiable metrics and milestones
with respect to the action steps and strategies in the national plan.
- We recommend that the Secretary, as part of her annual report to
Congress and the Advisory Council, report on progress over the prior year in
meeting the annual objectives, strategies and actions enumerated in the
National Plan, as well as provide a comprehensive, multi-year perspective, and
mid-course corrective action steps, that are needed in order to meet the 2025
goal of this Plan.
- 2013 Recommendations of the Public Members of the Advisory Council
on Alzheimer's Research, Care, and Services [Available February 22,
- Full HTML Version http://aspe.hhs.gov/daltcp/napa/2013AdvCounRec.shtml
- Full PDF Version http://aspe.hhs.gov/daltcp/napa/2013AdvCounRec.pdf
(18 PDF pages)
- Full PDF Appendix http://aspe.hhs.gov/daltcp/napa/2013AdvCounRec-A.pdf
(3 PDF pages)
- 2012 Recommendations of the Public Members of the Advisory Council
on Alzheimer's Research, Care, and Services [Available May 15,
- Full HTML Version http://aspe.hhs.gov/daltcp/napa/AdvCounRec.shtml
- Full PDF Version http://aspe.hhs.gov/daltcp/napa/AdvCounRec.pdf
(12 PDF pages)
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Disability, Aging and Long-Term Care Policy (DALTCP)
Assistant Secretary for Planning and Evaluation
U.S. Department of Health and Human
Last updated: 05/14/2012