Good Morning, Chairman Grassley, Senator Breaux and Members of the Senate Special
Committee on Aging. Thank you for the opportunity to testify on one of the most important
domestic issues facing our nation: long-term care for our elderly. I am joined today by
two members of my team, Dr. Jeanetter C. Takamura, Assistant Secretary for Aging, and Dr.
Richard Hodes, Director of the National Institute on Aging (NIA). We greatly appreciate
your bipartisan leadership on the elements of the President's long-term care initiative, particularly the Family
Caregiver Support Program.
In fact, before I begin, I want to recognize the special leadership role that this
Committee has played in bringing greater focus and awareness to the many health and
lifestyle issues facing our nation's senior
citizens, including Alzheimer's disease and
related disorders. I know the members of the audience and those they represent all across
America join me in expressing our deep appreciation to you Mr. Chairman, and Senator
Breaux, for the Committee's fine work over the
Mr. Chairman, when the late Stanley Kubrick made 2001 A Space Odyssey 30 years
ago, his vision of the future was one of revolving space stations and rebellious
computers. Now that 2001 is only two years away, we can argue about how close Mr. Kubrick
came to the truth.
What we cannot argue about is the changing face of America over the next 30 years. For
all the images we see in movies and television of a nation that is faster, younger and
healthier, the fact is we are heading for a world no demographer has ever seen before. And
the color of that world is gray. By the year 2030, the number of persons in our country 65
and older will double. And people 85 and older will be commonplace.
These changing demographics are no cause for alarm. But they are cause for action. We
want life not only to be long - but good. That means having the tools we need to care for
those ravaged by Alzheimer's and other chronic
or disabling diseases. This will be one of the central challenges of the 21st
century - to make dignity and comfort for the elderly as much a part of our national
consciousness as education and safety for our children.
Let me emphasize that millions of families across America already face this challenge.
In fact, family members provide most of the care for older persons who are no longer able
to manage on their own. So one of the reasons I am here today is to convey the
Administration's strong commitment to the
families and caregivers of people in need of long-term care. But we need to do more than
stand with them. We need to help them. That is the purpose of the President's long-term care initiative. To give these families -
and the loved ones they care for - the support, guidance and financial assistance they
Let me be clear: this initiative is not designed to just help older Americans. It is
part of a much broader strategy to help Americans of all ages who are disabled. And this
initiative is not just about money. It is about providing comprehensive assistance to
family members who provide and receive long-term care.
That means the hundreds of thousands of Americans living in communities across our
country, struggling to raise children, hold down jobs and protect their elderly parents.
Let me give you an example of the type of person I am talking about. Frank is an older
gentleman from the Chicago area. His wife is in a local adult day care center three days a
week. Those three days are Frank's respite. They
are a time of rest and relief - and also a time to buy the groceries and other supplies he
needs to hold his family together. What Frank does is a 24-hour-a-day, seven day-a-week
expression of love. At first the burden was manageable - and the fulfillment of a promise
he had made on his wedding day. Now Frank says that although the added stress and
exhaustion means he might end up going before her, "at
least my conscience will be clear."
What about our conscience? Frank and so many others like him deserve more than our
admiration; they deserve our support. Mr. Chairman, 95 percent of frail older Americans
who live in the community and need long-term care receive unpaid assistance from informal
caregivers like Frank.
Research indicates that informal support for caregivers has a significant impact on the
emotional well being of caregivers, as well as in delaying the need for nursing home
services. A recent NIH study found that adult day care not only reduces caregiver stress,
but delays the institutionalization of the care recipient. Another recent study indicates
that counseling and support for caregivers of people with Alzheimer's can keep the care recipient out of a nursing home
for an additional year.
Research also tells us that providing care to older persons exacts a heavy emotional,
physical and financial toll. Almost three-quarters of informal caregivers are women. Many
are older and vulnerable themselves, or are running households and parenting children. In
fact, half of all caregivers are over 65 themselves. That means their own health is at
risk. They suffer high rates of depression because they are emotionally strained. And not
surprisingly, one third describe their own health as fair to poor. Many caregivers have
had to cut back on their hours of work to provide elder care for their loved ones. Today,
two-thirds of working caregivers report conflicts between work and caregiving that require
them to rearrange their work schedules, work fewer than normal hours, and/or take unpaid
leaves of absence.
The National Family Caregiver Support Program
Mr. Chairman, long-term care does indeed take a huge financial and emotional toll on
the family and friends who provide most of this care. Because of its complexity, however,
no single policy can "solve"this problem. Thus, the President in his FY 2000
Budget has proposed a multi-faceted initiative to provide immediate assistance with
long-term care and help prepare for what will surely be one of the great challenges as the
baby boom generation ages.
First, the President's long-term care
initiative includes $125 million per year for the National Family Caregiver Support
Program to provide assistance to people caring for older family members.
Through the established networks of the Administration on Aging (AoA), this program
will enable states, working with area agencies on aging, local service providers and
consumer organizations, to create a community-based infrastructure of support for family
caregivers. State offices on aging would be expected to put in place at least five
important program components to meet complex and diverse care needs. These components
Providing information to caregivers about
- Assisting caregivers in gaining access to
- Individual counseling, organization of
support groups, and provision of caregiver training to help families make decisions and
solve problems related to their caregiver roles;
- Respite care to enable families and other
informal caregivers to be temporarily relieved from their caregiving responsibilities; and
- Providing supplemental long-term care
services, on a limited basis, to complement the care provided by caregivers.
Our proposal also includes competitive grants for the development of innovative
solutions to specialized caregiver problems. The results from these demonstration projects
and applied research will be put into practice through ongoing state programs. This will
lead to an understanding of best practices; in other words, which programs are the most
effective in helping caregivers and care recipients in the home, in the community or on
Second, the President's initiative includes a
targeted $1,000 tax credit for people with long-term care needs or their caregivers. For
some families, the tax credit will help to offset some of the direct costs of long-term
care, such as adult day care or home health care visits. For others, it will help offset
indirect costs such as unpaid leave taken from work.
Third, the President's initiative includes an
expansive educational effort to inform all Medicare beneficiaries about long-term care
options. Since most people who develop long-term care needs are Medicare beneficiaries,
Medicare can be used to provide information on the limitations of its coverage,
alternative sources of long-term care services and financing, and how best to choose the
most appropriate options.
Fourth, the President's proposal also calls
for the federal government to offer private long-term care insurance at group rates to
federal employees, annuitants and their families. Participants would be responsible for
paying the full amount of the premium and the market leverage of the federal government is
expected to save an estimated 15 to 20 percent from the cost of individual long-term care
policies. It will also set an example for other employers.
Fifth, our FY 2000 budget would expand access to home and community-based care services
to people of all ages with significant disabilities. Under this proposal, states could
provide Medicaid coverage to people with incomes up to 300 percent of the federal
Supplemental Security Income level who would be eligible for nursing home care but who
would prefer to live in the community. This new Medicaid option will make eligibility for
nursing homes and community-based services more comparable - and will eliminate one of the
sources of Medicaid's "institutional bias."
Sixth, the President's budget provides $100
million in competitive grants to enable existing HUD elderly subsidized (Section 202)
projects to convert some or all units into assisted living in order to provide the
additional services that many older Americans need to continue living as independently as
possible. Finally, the Vice President has started a series of forums on family caregiving,
raising important issues and educating people about their options.
Mr. Chairman, there are adult children in this country who - day in and day out - live
in terror that their mom or dad will wander off or hurt themselves because of Alzheimer's or a similar disease. We want to keep families from
having their lives wracked by stress, worry and despair. I speak from some personal
experience. When I was home in Cleveland over Christmas, my cousins told me about caring
for one of my aunts who has Alzheimer's disease.
My cousins rush home from work in the middle of the day, every day, to make sure that
their mother gets the help she needs. They are loving. But they are stressed. And they
need help. Unfortunately, there is little help for them because they are middle income and
do not qualify for Medicaid.
Frankly, my cousins' case is just one example
of many. We know that the lives and needs of caregivers are varied. We know that there is
no "one size fits all"answer. A complicated challenge requires a
comprehensive solution. Overall, our initiative is a pragmatic response to the growing
problems of long-term care. It provides comprehensive assistance, not just financial
assistance, to those requiring or providing long-term care. Our proposal is an historic
first step that represents a compassionate response to what I have already said will be
one of our nation's most compelling problems in
the 21st century. We must, as the President has said, "give care to caregivers."The President's
initiative helps to meet that challenge.
The Department's Alzheimer's Initiatives
Alzheimer's disease exacts a heavy toll on
its victims, their families, and our health care system. Each year new research helps to
sharpen the effectiveness of care for people with Alzheimer's disease. Nevertheless, the nearly four million
people in the United States
who have Alzheimer's
disease, or related disorders, is expected to double in the next 20 years. Each victim
will eventually require full-time care. This dreaded disease affects patients, their
families, caregivers and society. We must continue to evaluate the various models of care
for people with Alzheimer's and models of
support for their families so that successful approaches can be given broader
That is why I have directed the National Institute on Aging, under the leadership of
Dr. Hodes, to step up its efforts to study Alzheimer's
disease and related disorders. The NIH Alzheimer's
disease prevention initiative is being developed to expedite our progress in delaying or
preventing the onset of Alzheimer's disease. In
collaboration with other federal agencies and the private sector, this initiative will
foster new approaches to basic biological and epidemiological research; increase focus on
drug discovery and development; improve methods for early identification of people at
increased risk of developing Alzheimer's; and
facilitate testing of possible new treatments in clinical trials. The initiative will also
develop strategies for improving patient care and alleviating the burden of caregiving.
Just last week NIA launched a nationwide treatment study targeting people with mild
cognitive impairment, also known as MCI, a condition characterized by memory deficit, but
not dementia. Accurate and early evaluation and treatment of MCI individuals might prevent
further cognitive decline, including the development of Alzheimer's disease. This study is the first such Alzheimer's disease prevention clinical trial carried out by
NIH, and will be conducted at 65-80 medical research institutions throughout the United
States and Canada. Other trials are in the pipeline, many of which will piggy back
cognitive studies onto ongoing trials for the treatment or prevention of other conditions.
For those who now have Alzheimer's disease,
research and information efforts are being intensified to help alleviate part of the
overwhelming patient and caregiver burden, with special emphasis on the needs of a diverse
patient population. The NIA is also taking steps to make information about Alzheimer's disease clinical trials more accessible to the
general public. As part of a NIH-wide initiative on all major clinical trials, the NIA's Alzheimer's
Disease Education and Referral Center (ADEAR), in collaboration with the Food and Drug
Administration, is developing a database of ongoing Alzheimer's disease clinical trials. When complete, both
government and commercial trials will be represented. The database will be accessible on
the World Wide Web, and information will also be available through trained information
specialists of the ADEAR toll-free hotline (1-800-438-4380).
The Administration on Aging's Alzheimer's disease demonstration grants will help states to
take advantage of research findings and demonstrate effective models of non-medical care
for people with Alzheimer's disease. The
demonstration programs have proven to be very successful in reaching out to, and providing
support services to people with Alzheimer's
disease and their family caregivers. Special attention is being paid to minority,
low-income and rural families. Building on the approach instituted by the Health Resources
Services Administration (HRSA), AoA supports states in developing model practices for
serving people with Alzheimer's disease and
their families. Of the 15 grantees, 12 are state offices on aging, two are state health
departments, and one is a state mental health agency. Nationally, almost 150 agencies are
involved in the program. State and local Alzheimer's
Association chapters are active in all of the projects. Approximately 8,000 families have
been assured that their loved ones with Alzheimer's
disease are able to maintain the highest possible quality of life.
I also want to note the Administration on Aging's
highly successful national toll-free Eldercare Locator (1-800-677-1116). The Locator
provides important information and assistance to long distance caregivers who are seeking
help for their loved ones. We have found that many of the individuals who call our
Eldercare Locator are caregivers for family members with Alzheimer's disease.
Let me close, Mr. Chairman, by saying that the need for support for family caregivers
has never been greater. Caring for our elders has become a deeply emotional, sometimes
heartrending matter for millions of families across America. The number of those families
will only grow - as will the need for caregiving resources. The new century will bring
longer life spans, more changes in family structure, more women in the work force, more
geographic mobility and more delayed child rearing. We believe that the President's long-term care initiative, in particular the
National Family Caregiver Support Program, offers an important first step towards ensuring
that American elders and their families are able to enjoy a good quality of life, optimal
health and access to critical supportive services.
Chairman Grassley, Senator Breaux, members of the Special Committee on Aging, I greatly
appreciate your leadership on long-term care and other issues affecting senior Americans.
I look forward to working with you to meet the challenges and opportunities of the gift of
longevity. We have much to accomplish and many families to help. They are our friends, our
neighbors, our fellow citizens. The time to offer them the supportive hand they need is
My colleagues and I would be happy to address any questions you might have.