Seven Siblings: Who Will Get Alzheimer's?

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"She was unhappy when we took the car keys away, then we told her we were going to get the car to get fixed and she accepted that," said Elaine Albus. "I hear others have a personality change or become totally violent."

"As Mom would say, 'We are blessed.' And as awful as it was, it could have been so much worse," she said.

But things started to get more difficult.

"Eventually my dad started not sleeping well and worried about Mom getting up," said Elaine. "We convinced him to get overnight help so he could get a solid night's sleep and they could hear when she wandered."

They blocked off stairs and put locks high on doors so their mother couldn't open them. Her husband put wind chimes on the bedroom door so that he could hear it opening and closing.

Until their mother got pneumonia and died in the hospital, the family was able to keep her at home, where their father, now nearly 94, still lives on his own. "He's pretty sharp for his age," said Elaine.

"Right until the end, she knew Dad was someone important to her, though she didn't know who he was," said Becky Albus. "But we feel really blessed we didn't have to put her in a nursing home."

Some of the Albus siblings are happier about the poking and prodding of the Alzheimer's study than others.

Researchers took fasting blood samples, weight and measurements. Every two or three years, they are subjected to periodic mental tests, repeating word lists and solving math problems.

The follow-up continues "until they lose their funding or make some discovery," according to Elaine.

The study will compare its data, is looking at factors that might contribute to the onset of Alzheimer's, such as lifestyle choices and diet. Exercise is thought to be protective. They keep track of monitor cognition, years of education, biochemical parameters in the blood and rising levels of homocysteine, an amino acid associated with dementia.

"There is good data to suggest that midlife obesity, high levels of cholesterol in midlife and a host of other things that occur in midlife that increase the risk 20 or 30 years later," said study director Sager.

Participants are not told the results of all these tests, and the institute has filed a certificate of confidentiality with the National Institutes of Health, so that personal data can never be released and have an impact on insurance decisions.

At information sessions, Sager and his colleagues tell families like the Albuses, "There's no guarantee [the study] will help you one bit, but we hope your children will be the beneficiary of the research."

"At first, I naively thought this will save Mom -- they'd figure something out," said Becky Albus. "But it was quickly obvious that wasn't going to happen. And it probably won't happen for us either."

But the study has been "remarkable," said Elaine Albus. "I think we are all doing this because we loved our Mom. Mom can't benefit, but we might be able to benefit my 13 nieces and nephews."

"Its' very frightening to know that as the baby boomers age, there will be so many who get Alzheimer's," said her sister, Kathy. "We just wanted to do what we could to help."

To learn more about the work that researchers are doing to untangle the mysteries of neurocognitive disorders, visit the website of the Cleveland Clinic Neurological Institute's Lou Ruvo Center for Brain Health here and the Keep Memory Alive (KMA) website here.

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