Dr. Franklin Williams has described current research into the causes and treatment of alzheimer's disease (AD) in the United States.
Nancy Mace has described techniques of caring for those with AD, from diagnosis and assessment, to coping with the tasks of daily living.
I am going to talk about America's volunteer Alzheimer's Association, describing our programs and services for alzheimer's victims, their families, and their caregivers; and explaining how we work with other organizations within America's health care system.
I am going to start with a very short history of the association, be-cause it was formed and has grown in direct response to the urgent needs of families coping with Alzheimer's. I will then describe what we do in our major functional areas: community services, advocacy, research, and education. And finally, I will talk about the issues facing the Alzheimer's community in the United States, and what the association will be doing to meet these challenges and to stand by those in need of our help.

Before I describe the workings of the Alzheimer's Association, however, it is important for the audience to know four interrelated facts about America and its health care environment.
First, America has no national health care system, and no centralized public policy or funding to care for its elderly, its mentally incompetent, and its disabled.
Second, America has many layers of government that regulate health care - The federal government in Washington, D.C., the 50 state governments, and thousands of local community governments. They all regulate health care and social services, and allocate public resources within their defined jurisdictions. This creates overlap in regulation, inconsistency in service delivery, and confusion about how to access information and service.
Third, American families take care of their own. Of the estimated 1.8 million Americans with severe dementia who need constant care and supervision, 80-90% are cared for by family members - usually female spouses and adult children - within a home environment.
This tradition of family care has developed because we have no appropriate or affordable care alternatives; because of feelings of family obligation; and because Alzheimer's patients prefer to be cared for at home, and function longer in the familiar home environment.
Whatever the individual reason, caregiving in America is both intensive and long-term; what we refer to as the 36-hour day, or the endless funeral. Consequently, we have found that caregivers need almost as much support and service as Alzheimer's victims themselves.
And fourth, the majority of the cost for Alzheimer's caregiving in America is paid by patients and families, and by private voluntary giving. The cost of home care is estimated to be about $18,000 per year. It is paid almost entirely by families.
The cost of nursing home care, used by perhaps 10% of Alzheimer's patients, averages $30,000 per year. Nursing home care is paid for by federal or state entitlements: If the patient qualifies on the basis of financial need, he can get a medicaid stipend; or if he qualifies on the basis of age, he can get up to 90 days' payment through medicare. Given these strict eligibility requirements, families often must pay the cost of nursing home care themselves. Over the long course of this disease, these costs can bankrupt Alzheimer's families.
These four interrelated facts - lack of national health care, fragmented and overlapping governmental responsibility, a strong tradition of family caregiving, and self-payment - combine to form America's uncoordinated, underdeveloped, and piecemeal system of caregiving for the demented elderly.

1. ALZHEIMER'S ASSOCIATION (AA)

They also have determined the mission and activities of the Alzheimer's Association. And, although my remarks today focus on the association, we are by no means alone in our work regarding the disease or related care issues in the U.S.
We work very closely with many national organizations - the national institutes of health, the administration on aging, and the joint commission on accreditation of health care organizations, for example. On the state level we work with state agencies on aging, with health care providers, and with public health departments. And, at the local level, we are in close contact with social services providers such as the visiting nurse associations and meals on wheels, and religiously affiliated organizations.
We also work with many social advocacy groups that share our interest in fighting Alzheimer's - the American Association of Retired Per-sons, the National Citizens' Coalition for Nursing Home Reform, and the Citizens for Better Care, for example.
In partnering with these organizations, we try to define and set standards of caregiving and licensure. And we try to develop and to coordinate health programs and social services within communities.

To describe our organization very briefly, in the hope that an over-view will be helpful in comparison with your own organizations: founded only eleven years ago by family members of Alzheimer's victims, the Alzheimer's Association is dedicated to researching the cause, treatment, prevention - and ultimately the cure - for Alzheimer's disease and related disorders. and to providing support and assistance to afflicted patients and their families.
We are not associated with any government entity. We are nonprofit, and funded completely by charitable contributions. And we are made up almost entirely of volunteer family members of AD victims.
We are also a truly national organization, with headquarters in Chicago. Illinois; A public policy advocacy office in Washington, D.C.; and a network of community chapter offices throughout the United States.

The Alzheimer's Association is perhaps unique in having two very high-level and expert boards of directors for our national organization. One is a medical and scientific advisory board, which oversees our re-search grant and award program, and ensures a continuing high level of interest in the disease within the medical and scientific community. The expertise of these board members has been directly responsible for the association's first-rate reputation in government, medical, and scientific circles.
The other board consists of prominent social and business leaders, who devote themselves to overseeing our program and services development, and to fundraising activities. They lend their names and their considerable talents to our work, and represent the association within their own communities.
Each community chapter also has a local board of directors, which gives us a total of some 2,100 committed board members. All are volunteers. and they, too, are invaluable within their spheres of influence -contributing their leadership, their knowledge, their network of social and business contacts and, frankly, their money, to our cause.
Fundraising is critically important to the Alzheimer's Association, since virtually all of our operating revenue comes from private contributions -from individuals, corporations, foundations, and from special fundraising events such as celebrity golf matches, walk-a-thons, and higb-society galas. This year alone, we will raise over $40 million to support our pro-grams and activities. As we expand our services in the future, we must expand our fundraising accordingly.
And, as a final note on our organization, as many of you know, we also have an international organization, Alzheimer's disease international - or, ADI. ADI was established in 1984 to promote Alzheimer's charitable, educational, and scientific work worldwide. It currently has 23 members from around the world, and I am most pleased to welcome the association for the demented elderly, from Kyoto, which is in the initial stages of membership.
The Alzheimer's Association has four major program areas, which are easy to remember by thinking of the word, "Care": community services, advocacy, research, and education.
These areas were self-selected on the basis of need: because families needed help, we formed a network of community. Based patient and family services. Because caring for AD patients overwhelmed families financially, physically, and emotionally, we formed a public policy and advocacy program. Because nothing was known about what caused the disease, or how to cure it, we formed a research program. And because the public and many professional caregivers viewed the disease with ignorance or fear, we formed a public awareness and education program.
The real story of what we do to care for Alzheimer's patients, caregivers, and families is told through the activities of each of these four program areas, which I am going to detail individually.

First, Community Services.
At the national office in Chicago, we develop high-quality support services, programs, and information about the disease and caregiving. Materials include assessment tools, hands-on caregiver training, video tapes demonstrating caregiver techniques, and publications about the disease and the association.
These programs and services are delivered directly to Alzheimer's caregiver families through our nationwide network of 200 community chapters, and their 1,600 family support groups, and 35,000 volunteers. This is what we call our "Grassroots" network.
Chapters are chartered by the national office, and operate under uniform standards set by the association. Their professional staff and volunteers are trained to support Alzheimer's families through telephone help lines, caregiver training and respite, community referrals and, perhaps most important, family support groups.
Chapter family support groups are an integral pan of our services. In fact, they are the association's laboratory to test and refine caregiving techniques. In these monthly meetings, small groups of caregivers and family members share information, give and receive support, and exchange coping skills. Often a speaker is brought in to address a specific issue, such as dealing with disruptive behavior, or eligibility requirements for adult day care.
Knowledge and experience are shared within the group and, most important, quickly transmitted throughout the chapter, and to the national office for dissemination to other chapters nationwide.
For example, our chapter in Denver, Colorado, initiated a special support group program for people with early stage Alzheimer's. To help the patient and family work together on future care issues, the 10-week program includes discussions on diagnosis, patient and family goal setting, coping with change and loss, financial and legal issues, future caregiving needs, insurance coverage, community resources, and planning for long term care. Our national office codified the program, and it is now available to all chapters nationwide.
Other chapters are working with the national office to develop training models for professional caregivers, as well as target programs aimed at specific caregiver issues, such as patent wandering, patient safety, police training, isolated caregivers, and selecting a nursing home with a dedicated dementia care unit.
Respite care is a big issue for the association right now. Chapters are extensively involved with testing models of respite for primary caregivers, which our caregiver families tell us they need more than any other kind of help.
One project involves testing a variety of innovative day care, in-home respite care, and short-term residential care programs specifically designed for Alzheimer's patients. Another tests the financial viability of fully integrated services - in-home respite, day care, transportation and health care - as a collaborative effort sponsored by the Robert Wood Johnson Foundation, the U.S. Administration on Aging, and the Alzheimer's Association. And yet a third chapter demonstration project tested the use of federally. Organized senior citizen volunteers as in-home companions for alzheimer's patients.
Our chapter demonstration projects yield valuable data, which the national office analyzes and publishes as resource materials for care providers. Some of our more popular publications include: the respite care manual, the Alzheimer care program guide, and patient and family Alzheimer dementia care bibliography.
Also at the national office, one of our most popular community services is our information and referral telephone help line. We staff this telephone 24-hours a day with trained personnel, who provide callers with information on Alzheimer's disease, caregiving, and referral to community chapters and services. All calls within the United States are free to the caller. In 1990, we helped 30,000 callers on this line.
The Association also has an autopsy assistance network, which helps families arrange an autopsy of brain tissue from a deceased Alzheimer's patient. During 1990, the association's 45 network volunteers helped about 2,000 families and researchers with this last, and the only definitive, diagnostic test for Alzheimer's disease.

Our second program area, advocacy, is critically important within the United Srates, as we lack a national health care program, adequate government funding for research and caregiving, and centralized caregiving services. I suspect, however, that even countries with socialized medicine will share some of America's public policy issues: with limited budgetary resources, and burgeoning numbers of frail elderly. I think we will all become advocates in the halls of our governments.
In the U.S., the association is aggressively pursuing several public policy priorities, often as part of a coalition of more than 140 national organizations advocating long term health care financing. Our top priori-ties are:
･ Appropriation of $500 million in federal funds for biomedical re-search and for health services for Alzheimer's patients and their families by 1995.
･ Enactment of a federal long term care social insurance program that provides universal, comprehensive protection across the continuum of long term care. This includes efforts for greater public financing through medicare, expanding available care facilities, especially veterans hospitals, and regulating the quality of the care and treatment of patients within those facilities. And
・ enactment of federal and state legislation to increase the availability of respite care and supportive services to families who are caring for Alzheimer's patients at home.
We are also interested in private long term health care insurance; the use of experimental drug therapies for AD victims; guidelines for Alzheimer's special care units in nursing homes; and aggressive federal and state enforcement of nursing home reform law.
Although our advocacy effort is directed by our Chicago and Washington offices, it is helped enormously by our 35,000 caregiver advocates across the country. They are very effective at the local council level, before their state legislatures, and in Washington. D.C., as well.
Indeed, all of our advocacy efforts come together at our annual public policy forum in Washington, D.C., where we gather from throughout the country to lobby our congress, to meet with government staff, to testify before congressional committees, to exchange information, and to learn from invited speakers about the legislative and budgetary process.
I can honestly say that the Alzheimer's Association would only be a small piece of what it is today were it not for the impassioned advocacy of our AD families. They are a huge reservoir of talent, energy, ideas, and commitment. They unselfishly volunteer their talents - lobbying their legislatures, raising money, supporting their neighbors, informing their communities. I encourage you to tap this reservoir of volunteers in your own countries.

Our third program area is research. which is important both because of its obvious scientific benefit to the Alzheimer's community, and be-cause of the level of expertise and the authority it brings to the rest of our work.
We began our research programs in 1982, with the goal of encouraging more and better research into the cause treatment, management, prevention, and cure of AD and related disorders. We do this by soliciting proposals for biological, clinical, and social research relevant to degenerative brain disease. The Association's medical and scientific advisory board, which I described earlier, evaluates about 500 grant applications each year, and decides on research grants on a competitive, pcer-review basis, modeled after the national institutes of health peer review process.
To date, we have awarded more than $20 million for these research grants. Our pattern is to provide the seed money. which then yields a preliminary finding of scientific interest that attracts a major grant from other sources.
We have five levels of award. They range from a pilot research grant of $25,000 for new and innovative projects, to targeted one and two-year research grants, to our new zenith awards program of $100,000 a year granted to scientists who have already contributed substantially to the advancement of Alzheimer's research, and are likely to continue to do so.
In 1991, our funded awards projects fall into these categories: abnormal proteins, brain chemistry, genetics, brain function, and psycho-social research.
This last category, psycho-social research, includes a 1990 award of 11 individual grants exploring barriers to services for patients with Alzheimer's disease. And, in 1991, we have funded a project studying the factors influencing adult childrens' involvement with parents in nursing homes. This is part of our effort to help professional caregivers understand the problems of AD families and. in turn, to interpret and translate basic research into practical use for patients and families.
Within our research program, we also strive for dialogue among scientists and others involved with Alzheimer's disease. In 1900 alone, our research division sponsored an annual international symposium on AD; launched a multi-year series of scientific lectures by prominent Alzheimer's researchers, underwritten by the sigma tau foundation of Rome; published a position paper on clinical drug trials on AD; and co-sponsored a professional conference on nursing home special care units for AD patients.
Our fourth and final program area is education and awareness. Our national office and our chapter executive directors work together to develop informational materials to educate both caregivers and the general public, and to respond to media requests for information.
I am going to describe some of our activities in this area just in 1990 and 1991, to give you an idea of the scope of our work.
First, all callers to our toll-free telephone help line receive an Alzheimer's information kit, complete with fact sheets about the disease and the Association, and referrals to community organizations.
Beginning with diagnosis, AD families want reliable, easily under-stood information about what they can expect in the years ahead. To meet this need, in 1990 we produced six videotapes that provide up-to-date and practical information for family caregivers. These videotapes feature Alzheimer family members who relate their day-to-day experiences, giving viewers insight into how to cope with the real-life difficulties of caregiving. They are packaged with a collection of other educational materials, and can be viewed by support group participants, community organizations, or individual caregiver families in the privacy of their own homes.
Another current educational activity is a program of outreach to our non-Anglo communities. In 1990, we started a program aimed at Spanish-speaking communities nationwide. We have released two Spanish language videotapes and a "fotonovella" that provide an orientation to the disease and the services needed by patients and families.
All information published by the Association is catalogued, and for sale by mail order.
On the public awareness front, growing media and public concern about Alzheimer's disease has sparked rising demand for information. In 1900, our organization and our cause were highlighted on national television programs, advice columns, news programs, and magazines. All told, our public awareness efforts encouraged more than 50,000 people to write or call our national office for information and chapter referrals. An estimated 200,000 were in tough directly with our community chapters.
This year, in 1991, public awareness is even higher. A comprehensive article on the disease ran in the magazine, U.S. News and World Report The Wall Street Journal newspaper ran articles on the Association and the clinical trials of the drug treatment national public radio aired a segment on Alzheimer's disease. Just last month, an article on the Association and the disease ran in a nationwide Sunday newspaper supplement, Parade Magazine, which has a circulation of 35 million. A television program, "Losing it all: the reality of Alzheimer's Disease" was broad cast on national cable television network, reaching millions of viewers.
And next month, another article will appear in Reader's Digest, which is translated into 17 languages and has a worldwide circulation of 28 mil-lion.
In 1991, the total circulation for print and broadcast of Alzheimer's related articles will be over 500 million people. Alzheimer's disease may still be a mystery to medical science, but it is no stranger to anyone in America who can read, listen to a radio, or watch television.
One more very important point on our education and awareness pro-gram: our new green-field library in Chicago opened on November 4. This library is intended to be the international research resource for the Alzheimer's community, and will both collect and disseminate information about the medical and social aspects of the disease. The library will be a complete source of information for those involved in patient care, policy development, and research, as well as for those who just want to know more about Alzheimer's. It will have all printed materials on the disease, on-line research capabilities, and raw data catalogued from chapter demonstration projects.

By way of summarizing our activities: you have probably noticed that our four program areas work closely together to provide information and support to the Alzheimer's community. And indeed, the entire organization-members of the board of directors, professional staff from the Chicago and Washington offices, chapter staff, and volunteers, come together every year in Chicago. AT this annual meeting, we exchange program and service information, and participate in training sessions and seminars. In subject matter committee meetings, we upgrade our programs and materials, and set the path for our activities for the coming year. Sharing in-formation and experience outside the organization is also critically important to the fight against Alzheimer's disease.
We want to continue this effort, and continue to build working coalitions with every group that shares and can further our mission: retired people, labor unions, teachers, medical associations, all levels of government, and international groups such as the world health organization and our hosts here today, the organized by Sasakawa foundation.

2. PUTURE OF AD IN THE U. S.

Where do we go from here? What are the issues we will be dealing with in the future?
The Alzheimer's Association - and our many partners in the Alzheimer's community - are not likely to go out of business anytime soon.
We currently estimate 4 million Americans have Alzheimer's disease.
Given the aging of our population, if nothing is found to halt the onslaught of the disease, as many as 14 million Americans will have Alzheimer's by the middle of the next century. Each one will eventually need care. And, with greater awareness of the disease, and earlier and better diagnosis, they will need longer term care.
This burgeoning need is compounded by the fact that, in America and many other countries, traditional family caregiving is at risk of breaking down. Family caregivers are aging. Family structures are loosening. The number of caregivers is shrinking.
And the costs of care continue to escalate. The U.S. office of technology assessment estimated in 1987 that the total cost of caring for AD victims was $80 billion per year. This included $48 billion for direct costs, and $32 billion for the value of in-home services provided by family and friends. If "lost productivity" were to be included, the estimate would come to well over $1OO billion per year. And that was in 1987, when we thought there were only 2 million AD victims in the U.S.
Caregiving issues are very difficult to deal with, because they are so very subjective, culture-specific, and changeable as the needs of the Alzheimer's patient - and his or her caregivers - change. Indeed, as the Alzheimer's Association has moved from its research role into its caregiver advocacy and education roles, our work has become tremendously more difficult because there arc no standards, no definitions, to guide U.S.
The Alzheimer's community's biggest challenge, in my opinion, is establishing the same level of expertise in our programs and services for caregivers that we have developed in our medical/scientific role.
This begins with defining and prioritizing the issues, because if we don't, the government will do it for us. It extends through developing basic caregiver quality standards, and basic information about the disease that can be used across the country, and across the world. And it involves, for all of us, issues of cost - there is not enough money in the world to solve caregiving needs, so we had better be clear on what is most important to caregivers and patients, and how to deliver it in an affordable manner.

3. WHERE DO WE GO PROM HERE?

As the Alzheimer's Association looks to the future, we will devote our resources to where they matter most. To use the authority of our medical and scientific work to educate, advocate, and to inform. To strengthen our community chapters, especially in their role of information and referral. And to synthesize our experience and offer it to the rest of the Alzheimer's community.
We do not know exactly what outcomes we want, or how to achieve them. And we have many more questions than answers at this point. But we are willing to engage at any level - government, academic, one-on-one - to examine the issues. To test programs. To explore new service areas. To exchange experience and knowledge. And to export successes - interventions that work - until the time when Alzheimer's disease is but a memory itself.