Barbara White of Madison, Wis., says she'll never forget the sight of her mother's struggling with Alzheimer's disease. At times, she saw the disease slowly strip her mother away. But, she said, it also brought her siblings together.
"It's a real opportunity to just experience your parents in a very unconditional, soft way," White said. "Every day is a new day; every hour is a new hour, sometimes."
For years, treatment for Alzheimer's seemed to have little effect on patients' suffering extreme memory loss. Now, like White, many who have family members diagnosed with Alzheimer's are volunteering as subjects to help researchers study the disease. And for many researchers, proactive families mean a better opportunity to study brain changes in middle-aged adults as a potential key to treat and prevent the disease.
"The question is, can we find it decades before someone becomes symptomatic?" said Mark Sager, professor in the department of medicine at the University of Wisconsin-Madison school of medicine and public health.
Children of Alzheimer's disease patients are more likely to develop the disease themselves, according to the Alzheimer's Association. And more studies looking at early development of the disease suggest that it's time to break the label of Alzheimer's as a disease of old age, said Dr. Suzanne Craft, professor of psychiatry and behavioral sciences at University of Washington in Seattle.
"Midlife is a time of great vulnerability and the choices we make will have a huge impact in the way our body ages but also in the way our brain ages," Craft said.
With no treatment for the 5.3 million Americans diagnosed with Alzheimer's and the number of cases rising, it may seem that many adults with a family history of the disease would be reluctant to undergo genetic testing to determine their risk. But not White, who participates in studies in memory of her late mother; to learn more about herself and, possibly, to help future generations.
"I have the gene," said White, who is enrolled in one of Sager's Alzheimer's studies. "The tests [studies] are very interesting and it's a challenge."
While most research for treatment focuses on slowing the progression of the disease, many researchers such as Craft are also looking at ways to delay its onset.
Like White, Susan Hannibal's family history also indicates that she may be at higher risk to develop Alzheimer's.
"I would be lying if I said I wasn't scared about my future or my daughter's future; heaven forbid she has to take care of me," said Hannibal of Seattle, Wash., who has been diagnosed with mild cognitive impairment and is enrolled in one of Craft's studies. "I'd like there to be prevention in her lifetime."
Mild cognitive impairment is sometimes a precursor to Alzheimer's.
Craft said, "We may actually be further along the road in terms of preventing or delaying Alzheimer's disease than actually treating it once it manifests itself.
"[Insulin] helps brain cells communicate with one another. It helps regulate chemicals in the brain. It helps brain cells take up sugar," said Craft, who is researching insulin therapy as a potential way to slow progression or improve memory in patients diagnosed with mild cognitive impairment.
"In the brains of patients with Alzheimer's disease, insulin is not working very well."
Twice a day, Craft's study participants used a device to inhale insulin. Nearly 75 percent of participants showed memory improvement, said Craft, who tracked results through cognitive tests and brain scans.
Hannibal's test results showed a 20 percent improvement in her memory.
"It's definitely a motivation for me to want to try to do this again," Hannibal said. "There may not be a breakthrough in my lifetime, but perhaps using these tools can prolong [progression] or even stave off [the disease]."
While early results of Craft's study suggest that insulin therapy seems promising, more long-term studies need to be done.
"The most effective way to improve insulin's function in the brain is exercise," Craft said. "It seems to have a bigger effect for women than for men, both in terms of its ability to protect against Alzheimer's disease and improve some aspects of thinking, like the ability to plan and organize."
Regardless of the studies, researchers say progress is slow. It is still unclear whether tools such as insulin therapy and other methods work to prevent or treat the disease, or prolong its progression.
But as more people with family history of the disease participate in studies, researchers find they can better track brain changes over time.
"We are just the early pioneers beginning to look decades before people become symptomatic," Wisconsin's Sager said.