Chuck Jackson has early-onset Alzheimer's disease. So does his older brother and three of his cousins.
Jackson, an Alzheimer's patient from Albany, Ore., said 17 of his relatives have lost their battle with Alzheimer's, most before the age of 65. In 1967, at the age of 13, he became a caregiver for his mother.
Jackson joined several other Alzheimer's patients and caregivers on Capitol Hill Wednesday to ask lawmakers to increase their commitment to researching the disease. Alzheimer's affects as many as 4.5 million Americans, according to the National Institute on Aging. It is a disease in which a protein called A-beta becomes excessive in the brain, cutting off communication between nerve cells, eventually resulting in memory loss.
Among those testifying today before the Senate Special Committee on Aging is former Speaker of the House Newt Gingrich and former Supreme Court Justice Sandra Day O'Connor. O'Connor retired from the court in 2006 to care for her husband, who has Alzheimer's.
"It's so painful for someone you care about to see them disappear, in effect, before your eyes in every way, both mentally and physically. Very depressing," O'Connor told ABC News' Jan Crawford Greenburg in an exclusive interview before the hearing.
Urging the need for more research and funding for the disease, O'Connor spoke to lawmakers about the reluctance and fear many families dealing with Alzheimer's face. She said her own sons do not want to be tested for fear of insurance issues and the dire prognosis that currently faces those afflicted with the disease.
Medications currently on the market do not stop the progression of Alzheimer's but rather treat or delay its symptoms. Researchers said some drugs currently under study, which work by curbing the progression of A-beta in the brain, hold promise for slowing the disease's acceleration.
Still, Rudolph E. Tanzi, a neurology professor at Harvard Medical School and a geneticist at Massachusetts General Hospital, said it could take a while before everything is known about these drugs.
Tanzi said it generally takes about 20 years for research findings to translate into clinical trials for patients, adding, "While I am optimistic about the success of these trials, history dictates that the first drugs out of the gate are not always the best ones."
Tanzi said the mantra should be "early prediction, early prevention" and pointed to a future where a cocktail of drugs based on genetics could help sufferers of the disease have a higher quality of life than what currently awaits them.
On Wednesday, Gingrich offered a host of policy ideas to the committee on ways the federal government can help Alzheimer patients and their families. Gingrich was especially harsh towards "nameless bureaucrats" at the Office of Management and Budget and at the Congressional Budget Office, who he believes impede progress.
Meantime, Suzanne Carabone, a caregiver from Silver Spring, Md., whose husband was diagnosed with Alzheimer's eight years ago, described the challenges that come with providing care.
In a prepared statement to senators, Carabone said that when she and her husband first found out that he had the disease, they were given a few prescriptions, minimal advice and sent on their way. Carabone's husband has since moved into an assisted living center that costs the family $73,000 a year.
"I felt as if we were on shifting sand, because as soon as I had a care plan in place, my husband's needs changed," she testified.
Several people at the hearing could relate, including some of the senators participating. About 200 family members and caregivers of people with Alzheimer's packed into the hearing room, and senator Ron Wyden of Oregon recalled his mother's struggles with the disease.
Wyden said his mother is in long-term care at a facility in California and fairly incapacitated.
"Clearly, Alzheimer's disease is a family disease," O'Connor said in her prepared statement. "It may directly attack only one member of a family. But every member of that family feels the effects. Every member loses something."
ABC News' Jan Crawford Greenburg contributed to this report.