Presentation to White House Conference on Aging

AAA Host Advisory Committee Solutions Forum

September 12, 2005

By Mark Pafford, CEO

Alzheimer's Association Southeast Florida Chapter

Hello, my name is Mark Pafford, CEO of the Alzheimer's Association
Southeast Florida Chapter. Locally, the Chapter provides services to 5
counties; Broward, Palm Beach, Martin, St. Lucie and Okeechobee
Counties.

4.5 million Americans currently have Alzheimer's disease. By 2050 the
number of Americans with Alzheimer's disease is projected to rise to a
number between 11.3 million to 16 million.

Florida has an estimated 450,000 citizens with Alzheimer's disease. More
than 150,000 of these people live in Southeast Florida and the Treasure
Coast. Because many retirees choose to move to Florida for their
retirement years, the demographics of this state represent a vision of
the future of the entire country in respect to the age of the
population. At age 65 10% of the population will have Alzheimer's
disease. This rises dramatically to 50% at age 85. In this respect
Alzheimer's disease is as dangerous as any known national threat and
would rank "red" on the Department of Homeland Security threat advisory
scale.

There are currently 35 million Americans age 65 or older and 78 million
baby boomers will turn 65 in six years. As a result, the over-85 segment
of the population---nearly half of whom are nursing home residents---is
projected to triple by 2050. The increased elderly population does not
simply reflect overall population growth; this segment is also becoming
a larger proportion of the population. In 2000, one-in-eight U.S.
residents was 65 or older, but Census projections anticipate one-in-five
residents in that age group by 2030. The Centers for Disease Control and
Prevention has called this age shift a "Longevity Revolution." This
unprecedented population trend in combination with what we know about
Alzheimer's disease represents a clear, present, and approaching
disaster if we fail to act now.

Over the next four decades, Alzheimer's disease will increasingly become
more prevalent threatening our already strained health care system, the
long term care system, and our economy.

Alzheimer's disease presently costs American business at least \$61
billion annually. \$35.6 billion is due to lost productivity and
caregiver turnover. \$25.4 billion is due to business share of health
and long term care benefits. Medicare costs for Alzheimer's disease are
\$92 billion annually and Medicaid costs for Alzheimer's disease are
\$21 billion annually.

Personally, Alzheimer's caregivers shoulder the heaviest burden of care.
71% have been caring for more than a year. 32% have been caring for more
than 5 years. 23% provide more than 40 hours per week of care. These
caregivers make great sacrifices. 49% of caregivers skip vacations and
social activities. 55% have less time for other family members. These
caregivers spend an average of \$218 per month out of pocket on food,
medications and other expenses for the care recipient.

There are problems associated with being a caregiver for a family member
with Alzheimer's disease. Seven in 10 people with Alzheimer's disease
live at home. Almost 75% of care is provided by family and friends. The
average annual cost of care at home is \$19,000 because family and
friends provide most of the care. 27% of dementia caregivers say that
they need more formal training to manage their responsibilities. 60% of
the time, they also pass away prior to the loved one they care for.

[The Alzheimer's Association would recommend that The White House
Conference on Aging support policies that enact a comprehensive national
long term care policy that puts a greater emphasis on home and community
based care. Funding for the National Family Caregiver support Program to
expand access to respite care, caregiver training and counseling should
be increased]{.underline}

Long-term care costs, projected to increase exponentially as the baby
boomers age, are an important focus of the ongoing debate about Medicaid
reform. The Medicaid program currently covers two-thirds of the nation's
1.6 million nursing home residents. These demographic trends are
amplified by concerns about the mounting costs of traditional long-term
care delivery, with the estimated cost for a private room in a nursing
home now averaging more than \$62,000 annually. In some areas of the
country the amount is much higher. Medicaid only pays 50% of the nursing
home bill.

Long term care for persons with Alzheimer's disease poses many problems.
The nursing home residents with Alzheimer's disease are among the most
frail and vulnerable elderly. Nearly 60% of all nursing home residents
have some form of dementia. The Alzheimer's Association not only
includes Alzheimer's disease, but other forms of dementia such as
vascular dementia, Pic's syndrome, Lewybody disease, etc.

[The Alzheimer's Association would recommend that the White House
Conference on Aging support policies that protect the Medicaid safety
net. Medicaid should be improved to include: single points of entry into
Long Term Care; applicant screening to determine the level of care
needed; targeting at-risk Long Term Care populations for home and
respite care; and establishing care managers to coordinate services and
spending.]{.underline}

Medicare expenditures for persons with Alzheimer's disease are high. It
costs Medicare about 3 times more to provide care for an Alzheimer's
client than for others. 95% of Medicare beneficiaries with dementia have
on or more other chronic conditions. The combination of Alzheimer's
disease and other conditions results in 3 times more hospital stays and
3 times the cost for home health care.

Medicare does not cover geriatric assessment and chronic care
management. The Geriatric and Chronic Care Management Act (S.40, H.R.
467) directs Medicare resources to chronic care but has received little
attention by Congress.

[The Alzheimer's Association would recommend that the White House
conference on Aging support policies that establish a targeted chronic
care benefit including coverage for geriatric assessment and care
coordination services within Medicare to improve the quality of care for
beneficiaries with dementia]{.underline}.

There has been a slowdown in federal funding to cure Alzheimer's
disease. There has been a decline in constant dollars available for
research. The proposed increase for the 2006 NIH budget was only ½%.
This is the smallest increase in the past several decades. The
remarkable momentum to find a cure for this lethal disease has seemingly
slowed thus prolonging the pain many caregivers and patients will
continue to endure.

Limiting federal resources for Alzheimer's research means that there
will be a limited number of new grants and cuts will be made to ongoing
grants. There will be a limited ability to recruit young researchers.
There will be a lack of funding for clinical trials of promising new
treatments.

As a result there may be missed opportunities for return on research
investments. Currently it is projected that \$51 billion in Medicare
savings by 2015 and \$10 billion in Medicaid savings by 2015 will be
lost.

[We recommend that the White House Conference on Aging should support
policies that expand the federal commitment to Alzheimer's research by
raising the overall funding to \$1 billion, and to continue to make
Alzheimer's disease a high priority at the National Institute of
Health.]{.underline}

There is a need to strengthen commitment to prevention and early
diagnosis of Alzheimer's disease. Few Americans are aware that a growing
body of evidence suggests that a healthy lifestyle may help delay the
onset of Alzheimer's disease. Maintaining physical activity and social
engagement may also help prevent Alzheimer's disease but few Americans
are taking action to reduce the risk. The impact of the budget deficit
has had a negative effect on spending for social services. This has led
to missed opportunities to inform consumers about steps they can take to
adopt healthy lifestyle practices.

[We recommend that the White House Conference on Aging support policies
that provide information to all persons, especially baby boomers and
older adults, about brain health and effective measures to reduce risks
of developing Alzheimer's disease by maintaining a healthy
lifestyle.]{.underline}

On behalf of the Alzheimer's Association I thank you for this
opportunity to provide insight on Alzheimer's disease and its cost to
every American.