Alzheimer's: The Need for Answers, Taking Care

by Food and Drug Administration (FDA)

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The Need for Answers

Although no cure for Alzheimer's is available now, planning and medical/social management can help ease the burden on both patient and family members. Physical exercise, good nutrition, and social activities are important. A calm, structured environment may also help the person to continue functioning.

At some point, however, people with Alzheimer's require 24-hour care. The financing of such care, including diagnosis costs, treatment, and paid care, is estimated to be $100 billion annually, according to the Alzheimer's Association. The federal government covers $4.4 billion and the states another $4.1 billion, with much of the remaining costs borne by patients and their families.

"It's a national imperative to find effective means to diagnose, treat and prevent this disease," says David Banks, R.Ph., a public health specialist in FDA's Office of Special Health Issues. "When you look at it demographically, the nearly 80 million baby boomers living in the United States ... now have an average life expectancy of approximately 78 years. One in five Americans could be age 65 or older by 2030, and tens of millions of baby boomers will live into their 80s. The Alzheimer's Association projects that as many as 14 million Americans could have Alzheimer's disease in 2050. When viewed in the context of accelerating Social Security and Medicare costs ... , the future monetary costs of Alzheimer's disease may be unsustainable. The human costs could be even greater."

"As we learn more about genes and other factors affecting the onset of Alzheimer's, the possibility of delaying the disease becomes more real," says Zaven Khachaturian, Ph.D., director of the Alzheimer's Association Ronald & Nancy Reagan Research Institute. "If we can push back the onset of Alzheimer's for just five years, we can reduce by 50 percent the number of people who get the disease, add years of independent functioning to people's lives, reduce the amount of care they need, and save this country billions of dollars in health-care costs."

Taking Care

Collateral damage. That is what actor David Hyde Pierce calls the toll that Alzheimer's takes on the care-givers. Hyde Pierce, who plays Niles Crane on the TV sitcom "Frasier," testified before Congress last January on the need to invest in Alzheimer's research.

He said his grandfather's death from Alzheimer's was devastating, both emotionally and physically, for his mother and aunts as well as himself. "I was trying to think of a way to explain to you how awful that was ... when I had the terrible realization that Alzheimer's is becoming so widespread the chances are that you know someone struggling with this disease ...," he told Congress.

Care-givers do not have to struggle alone. The Alzheimer's Association, the only national voluntary health organization dedicated to Alzheimer's research, provides education and support services for patients, families and care-givers. Founded in 1980 by family care-givers, today there are over 200 chapters in 50 states.

"We can direct callers who call our national toll-free information line to local chapters and local support groups and to specific service providers in their local communities," says Niles J. Frantz, associate director for media relations.

The organization also sponsors Safe Return, the only nationwide identity program for people with Alzheimer's disease who wander, a common and potentially life-threatening behavior that may accompany Alzheimer's disease. The program includes identification products like wallet cards and clothing tags, a national photo/information database, wandering behavior education and training for families and care-givers, and a 24-hour toll-free emergency crisis line. To register, a person with dementia or their care-giver fills out a simple form, supplies a photo, and chooses the type of ID product the registrant will wear or carry. If a person is reported missing by a care-giver or family member, Safe Return immediately alerts local law enforcement agencies, and photo flyers can be created and faxed to law enforcement personnel and hospitals to aid in the search. Local Alzheimer's Association chapters provide family support while searches are conducted. Since 1993, the program has helped to locate and return more than 2,700 registrants to their families.

Tracking Down Trials

Information on Alzheimer's research and clinical trials will be easier to find in the near future.

"[FDA has] embarked on a joint project with the National Institute on Aging to develop a prototype database that's similar to what is available on AIDS and cancer," says Terry Toigo, R.P.H., M.B.A., associate commissioner for FDA's Office of Special Health Issues. "We've sent letters to companies investigating Alzheimer's therapies asking them to consider listing their protocols."

Eventually, the database will be available electronically on the Internet. It will include a registry of clinical trials and information pertaining to experimental treatments for life-threatening diseases.

The database will help specialists at the National Institute on Aging's Alzheimer's Disease Education and Referral (ADEAR) Center answer consumer questions about trials and research.

About the Author

www.fda.gov
FDA is A United States government body that oversees medical devices, including contact lenses, intraocular lenses, excimer lasers and eyedrops. In the US, these products must be approved by the FDA before they can be marketed.