Issues in Public Policy Relating to Alzheimers Disease and Related Disorders

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Issues in Public Policy Relating to Alzheimers
Disease and Related Disorders
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6,659 15.4
9,701 15.1
7,487(14.8)
14,896 (14.4)
14,084 (14.5)
23,485 (14.7)
Total Cases- 76,312
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Estimation Formula for Prevalence Rates of AD in
Louisiana by Age

• 65-74 years old 4.1
• 75-84 years old 20.9
• 85 years old 47.8

Prevalence rates for those age 65 or older were
calculated by applying incremental prevalence
rates for age groups 65-74, 75-84, and 85 from
research by Evans, Funkenstein, Albert, et al,
Prevalence of Alzheimer's Disease in a Community
Population of Older Persons Higher Than
Previously Reported, Journal of the American
Medical Association, Nov. 10 1989, Vol. 262,
No.18, 2551-2556. This study determined
prevalence rates for AD by excluding any other
possible cause of dementia (using strict
NINCDS/ADRDA diagnostic criteria) and for AD
identified together with some other, coexisting
cause of dementia. The former rates (for AD
alone) are the basis for the estimation by the
national Alzheimer's Association that there are 4
million people with AD in the U.S., a number also
used by the U.S. National Institute on Aging. The
regional prevalence cited in the figures here,
however, reflects the latter rates (i.e., it
includes AD as a coexisting cause of dementia),
which are slightly higher. They are as follows
age groups 65-74 (4.1), 75-84 (20.9), 85
(47.8). For the purposes of this report, the
data were applied to all residents of the state's
cities and towns as reported in the 2000 U.S.
Census, including those in long term care
facilities.
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What happens if we do not act..
The Number of people with AD will increase from
4.5 million to almost 17 million by 2050

• Within 10 years, total annual Medicare costs for
  people with AD will increase by almost 55 to
  nearly 50 billion
• Within 10 years, Medicaid health and long-term
  care expenditures will rise by nearly 80 to 33
  billion annually
• The largest part of increased Medicare costs is
  for hospital care. Beneficiaries with dementia
  are in the hospital 3.4 times more often than
  other elderly beneficiaries, at 3.2 times the
  cost to Medicare.

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Average Medicare Health Care Costs for Persons
with Alzheimers Disease vs. those without AD
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Average Costs for Chronic Conditions with AD and
without AD
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Alzheimers Association National Public Policy
Initiatives
The National Alzheimers Association has three
broad public policy initiatives

• Cure - Provide 1 billion for basic and clinical
  Alzheimers research
• Prevention Launch a healthy brain initiative
  and provide education on maintaining a healthy
  brain with aging
• Care Establish a targeted chronic care benefit
  within Medicare implement the new prescription
  drug benefit preserve long-term care safety net
  enhance caregiver support

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The Cure
Appropriate 1 billion for Alzheimers research
at the National Institute of Health

• The best treatment for individuals, for the
  health care system and for the public health
  system is prevention.
• If science could delay the onset of the disease
  by 5 years, the number of individuals with the
  disease could be reduced by as much as 50 over
  time.
• At current levels NIH can fund 1 in 4 research
  proposals, it would take an additional 25
  million for the NIA alone to fund 10 of the most
  promising AD research proposals.

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The Cure
Appropriate 1 billion for Alzheimers research
at the National Institute of Health

• Other Policy Recommendations
• Accelerate investments in clinical trials
• Develop better animal models to test potential
  new treatments
• Invest in new biological assays and imaging
  techniques to monitor changes in the brain that
  indicate progression of AD
• Speed the discovery of risk factor genes for
  late-onset AD

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Prevention
Launch a healthy brain prevention initiative in
partnership with government agencies

• As research demonstrates similarities between the
  known risk factors for heart disease and the risk
  factors for AD, opportunities to preventing or
  delaying onset of AD become apparent.
• New research suggests that controlling weight,
  blood pressure, and cholesterol levels may be as
  good for the head as they are for the heart.
• Maintaining the brain by remaining physically and
  intellectually active and socially connected may
  also help to stave off dementia.
• http//www.alz.org/maintainyourbrain/overview.asp

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The Care
Establish a targeted Medicare chronic care
benefit implement the new Medicare prescription
drug benefit preserve the Medicaid long-term
care safety net
Individuals with AD need ongoing care management
to monitor their health status and prevent the
acute care crises that are driving up Medicare
costs today

• Research has shown that simple interventions such
  as early identification of AD, consultation among
  care providers and ongoing caregiver support can
  reduce hospitalization and delay nursing home
  placement saving both Medicaid and Medicare
  money

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The Care
Establish a targeted Medicare chronic care
benefit implement the new Medicare prescription
drug benefit preserve the Medicaid long-term
care safety net

• Medicare chronic care benefit should include
  payments to primary care providers for an initial
  assessment development of a coordinated care
  plan care management activities medication
  management multidisciplinary care conference and
  ongoing consultation with the beneficiary and
  his/her family
• Prescription Drug Coverage passage of the
  MPDMA is a move in the right direction we must
  however be vigilant in seeing that it doesnt
  cause undue hardship or penalize older, sicker
  beneficiaries who have higher health care costs

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The Care
Preserve the Medicaid long-term care safety net

• Medicaid is the largest single payer of LTC in
  the US and a last resort for persons with AD who
  have no other way to pay for care
• Half of all Medicare beneficiaries with AD also
  receive Medicaid to help pay for long-term care,
  prescription drugs and other medical care
• In 2000, Medicaid spent 18.2 billion on nursing
  home care for people with AD
• Medicaid expenditures for people with AD are
  expected to rise to 33 billion by 2010 (an 80
  increase over current spending)

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The Care
Preserve the Medicaid long-term care safety net

• Congress and the President need to work toward
  preserving the LTC safety net, this includes
• Maintaining or improving the federal entitlement
  to benefits
• Preserving existing nursing home quality
  standards
• Protecting against spousal impoverishments

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The Care
Preserve the Medicaid long-term care safety net

• Preserving the LTC safety net also includes
  continued improvements in the quality of care in
  LTC facilities including
• Maintaining sufficient staffing levels
• Adequate compensation of staff and the provision
  of dementia-specific training
• Continued or increased state level funding for
  Medicaid-matched programs

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National Support for Caregivers
Slide 40
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National Advocacy Resources
Slide 40
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State Public Policy Issues
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State Level Public Policy Concerns
In addition to advocating for the National
Alzheimers Association Public Policy
Initiatives, many state associations are focusing
on state level issues

• Promote and Expand Home and Community Based
  Options
• Workforce Shortage, Training, and Development
• Caregiver Support
• Assisted Living
• Other Issues

The following public policy concerns are the
opinion of the speaker and are not necessarily
policy concerns of the Louisiana Alzheimers
Association
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State Level Public Policy Concerns
Promote and Expand Home and Community-Based
Options

• Currently, 70 of all people with Alzheimers
  disease live at home family and friends provide
  more than 75 of all care at no expense to the
  state or federal government
• Expand waiver programs to meet current demands
• Increase respite care opportunities for Alzheimer
  families
• Improve access to home and community based
  service options
• Increase funding for the National Family
  Caregiver Support Act

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State Level Public Policy Concerns
Promote and Expand Home and Community-Based
Options

• Support funding for individuals eligible for
  nursing home placement to provide HCBS for
• self-directed care (cash and counseling)
• assisted living
• adult foster care
• adult day care (27 DHH licensed adult day cares
  in LA)
• other services necessary to maintain a person in
  a home and community-based setting, including
  transportation, housing, education, and work
  force development

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State Level Public Policy Concerns
Workforce shortages, training and development
Nursing care facilities, assisted living, in-
home care and other provider agencies in
Louisiana are experiencing a staffing crisis.
Lack of staff and lack of dementia care training
has a direct impact on care. Persons with
Alzheimers disease and related forms of dementia
are among the first and most significantly
affected, as they require consistent, familiar,
and adequately trained staff to deliver basic
care.
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State Level Public Policy Concerns
Workforce shortages, training and development

• Support new and ongoing efforts that will assure
  a stable, high quality workforce to meet the
  growing demands of long term care
• Due to the fact that nearly half of all nursing
  home residents have Alzheimers disease or
  related dementia, it is recommended that all
  nursing home staff have ongoing dementia care
  training

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State Level Public Policy Concerns
Workforce shortages, training and development

• Ensure that emergency and law enforcement
  personnel have
• adequate dementia training and are familiar with
  the Alzheimer
• Associations Safe Return Program
• Almost 60 of persons with dementia will wander
  from home.
• If not located within 24 hours, 46 of these
  people will die.
• Safe Return is a national identification program
  for people with dementia.
• Emergency and law enforcement personnel can play
  a life-saving role in reuniting AD individuals
  with their families.

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State Level Public Policy Concerns
Caregiver Support

• Quality care at home depends on family caregivers
  who are not only educated and informed, but
  healthyand services and support are essential
  for maintaining older Louisianians at home for as
  long as is safely possible.
• Seventy to seventy- five percent of individuals
  with Alzheimers disease or related dementia
  continue to live in their home.
• The average cost to families for providing care
  and medications for their loved one during the
  course of the disease is over 175,000.

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State Level Public Policy Concerns
Caregiver Support
Alzheimers affects not only those directly
afflicted it takes a heavy toll on those who
take on the burden of caregiving. AD caregivers
are more likely to become ill or injured, use
medication for related problems, and suffer from
clinical depression. New research underscores
the importance of early detection and care
management services in preventing the
adverse effects of caregiving.
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State Level Public Policy Concerns
Caregiver Support

• Support any new initiatives that will increase
  family caregiver support including, but not
  limited to
• Tax credits for family caregivers
• Expansion of publicly funded services to
  caregivers
• Ongoing implementation of the federal Family
  Caregiver Support Program funds
• Encourage the development of privately and
  publicly supported programs that will address
  the challenges of caregiving in rural areas of
  the state

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State Level Public Policy Concerns
Assisted Living for Individuals with Dementia
Nationally, 40 to 60 percent of all assisted
living residents have Alzheimer's disease or a
related dementia. In response to this growth,
many states, as well as the national Alzheimers
Association, are addressing the need for
regulations that protect and benefit AD
residents States need to work with Assisted
Living facilities to develop guidelines that may
protect Assisted Living residents that have AD,
to ensure and advance the quality of care and
safety for these residents
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State Level Public Policy Concerns
Assisted Living for Individuals with Dementia

• These guidelines should include
• Building safety standards
• Staffing adequately both in number and training
• Writing facility procedures to ensure the
  protection of all
• residents in the event of a disaster, including
  those that need assistance in order to evacuate
• Having resident assessments and service plans
  that address the specific needs of residents
  with dementia

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Another Prominent Policy Issue - Driving
A diagnosis of Alzheimers disease is not, on its
own, a sufficient reason to withdraw driving
privileges. The determining factor in
withdrawing driving privileges should be an
individuals driving ability. When the individual
poses a serious risk to self or others, driving
privileges must be withheld. In Louisiana, there
is currently no provision to take away the keys
until at least age 70 even with a medical
diagnosis of AD.
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Who Should Make the Driving Decision?

• Should physicians be responsible for making the
  driving decision?
• Should state laws make the decision by requiring
  frequent testing of all older drivers?
• Should DMV personnel be trained and allowed to
  make the driving decision based on signs or
  symptoms of AD?
• Should others involved in the well-being of the
  individual (i.e. police officers, social workers,
  or family members) be encouraged to file a
  hazardous driver report based on AD diagnosis?

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What happens when the Decision is Made?
Driving Alternatives its not enough to say a
person should no longer drive. What alternatives
are their to driving

• Public Transportation - This option may work for
  people with mild dementia who live in urban areas
  and are already accustomed to using these
  methods. Public transportation is often too
  complicated for those with more advanced
  dementia.
• Taxis - Taxis can be a cost-effective
  alternative, especially when fares are compared
  to the expense of gas, insurance, taxes, repairs
  and car payments. Taxis could be used for people
  in middle to later stages of dementia if there
  are no serious behavioral problems and community
  support is available.

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What happens when the Decision is Made?

• Friends and Relatives - Friends, neighbors,
  relatives or caregivers can offer to drive the
  person with dementia to appointments or other
  social events.

However, what can be done for AD individuals who
have little family support or live in largely
rural areas?
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The Governors Health Care Reform Summit
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The Governors Health Care Reform Summit
At the federal level, the President sets the
policy agenda for his administration. On the
state level, the Governor sets the policy agenda
for Louisiana. Advisors, advocates, and experts
in the field can all influence public policy.
The most visible public policy initiative
spearheaded by the Governor may possible be the
Governors Health Care Reform Summit.
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The Governors Health Care Reform Summit
What is the Governor's Health Care Reform Panel?
The panel is a group of individuals including
national experts on health care, legislative and
governmental leaders, business leaders, and a
representative from each of the nine health care
regions throughout the state.  What is the
purpose of the Panel?  The purpose of the
panel is to provide guidance and support to the
Department of Health and Hospitals in a
continuing effort to improve access and quality
of health care for the citizens of Louisiana.
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The Governors Health Care Reform Summit

• The Governors Health Care Reform Panel has been
  charged with
• Studying and discussing the state of health and
  health care in Louisiana and making
  recommendations for change
• Serving as a resource by information-sharing
  drawing on personal knowledge or by directing
  policymakers to issue-specific experts
• Providing direction to the Department of Health
  and Hospitals in developing and implementing
  objectives for the overall improvement of
  Louisianas health care system

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The Governors Health Care Reform Summit
What are the primary areas being addressed
through the Health Care Reform Efforts? The
panel will provide policy recommendations, based
on the regional meetings, in six major
areas Focus Area A - Providing Care to the
Uninsured Focus Area B - Access to Appropriate
Health Care Resources Focus Area C - Improve and
Restructure Long Term Care Focus Area D - Health
Education and Awareness Focus Area E - Improved
Administrative Delivery of Health
Care Focus Area F - Focus on Performance Outcomes
Using Evidence Based Principles
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The Governors Health Care Reform Summit
What is the purpose of subdividing the panel into
regional committees?  Providing a forum for open
discussion and feedback that ensures the
Stakeholders from all areas of the health care
system and interested civic and governmental
leaders are involved in the regional health care
policy-making process. Studying and discussing
the state of health and health care in their
region and make recommendations for
change. Developing recommendations that will
support change in the organization and structure
for the delivery of and access to health care in
each region.
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Other Prominent Policy Issues - Stem Cell
Research
In keeping with its mission to eliminate
Alzheimers disease, the Alzheimers Association
opposes any restriction or limitation on human
stem cell research, provided that appropriate
scientific review, and ethical and oversight
guidelines are in place.
Some experts believe that embryonic stem cell
therapy to replace damaged nerve cells in the
brain is the best hope for defeating
Alzheimer's. Why not use adult stem cells
instead of using human embryonic stem cells in
research?Human embryonic stem cells are thought
to have much greater developmental potential than
adult stem cells. This means that embryonic stem
cells may be able to give rise to cells found in
most tissues of the embryo, whereas adult stem
cells are thought to be much more limited.
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7 instruments foundBACK TO PREVIOUS PAGE
Louisiana Stem Cell Debate
7 instruments found
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7 instruments foundBACK TO PREVIOUS PAGE
Louisiana Stem Cell Debate
The Louisiana legislative session has ended,
without any of the three cloning bans passing.
Governor Kathleen Blanco told pro-life advocates
that she does not support embryonic stem cell
research, and favors the wholesale cloning bans
that pro-life organizations have supported. Only
Iowa, Arkansas, Michigan, and North Dakota have
enacted wholesale bans on human cloning. New
Jersey has the most extreme pro-cloning
legislation in effect, allowing for the cloning,
implantation, and termination of the embryo
through the newborn stages of prenatal
development.
7 instruments found
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BE ACTIVE, BE VOCAL, BE INVOLVED!

• While many of the policy issues presented here
  are not necessarily specific to Louisiana, they
  all warrant discussion in the public arena. All
  of these issues are, ultimately, public policy
  issues as such they require input from the
  public.
• For any policy initiative to be successful,
  policy makers need to ensure that all relevant
  stakeholders are informed and involved in the
  policy making procedure.
• All to often, policy is made with little input
  from those who are most affected by the issues.
  We have a unique opportunity to make ourselves
  heard and be directly involved in the policy
  making process right now.