Retired pastor and social worker John Yeaman visits Margaret, his wife of 50 years, daily. The retired schoolteacher and mother of two grown children has been under Hospice care for more than two years in an Alzheimer's care unit. Photo by Elena Watts.

By Elena Watts
For Reporting Texas

John Yeaman’s wife, Margaret, an 81-year-old retired schoolteacher, was as stubborn as her father was German. Surviving the voyage on an overcrowded, typhus fever-riddled ship, her ancestors established a farm in South Texas between Victoria and Cuero, where she and her sisters were reared two generations later.

She was a secretary at Southern Methodist University when she registered him for the theological seminary in 1950, and he was drawn by her smile. “Margaret knew what she wanted. She intended to get it. She overcame obstacles, and she was determined,” he said. She was a feminist before feminism existed, which John found attractive.

Margaret is still alive, but she has been ravished by vascular dementia and Alzheimer’s disease. Her headstrong determination has slipped over 16 years into a delirious stupor. For the past nine years, she has lived in an Alzheimer’s unit, where John visits her daily. She has received hospice services for the last three years.

This year, 76 million baby boomers turn 65. They are likely to add to the 5.4 million Alzheimer’s patients already in the country’s care. Without medical breakthroughs, by 2050 the mysterious protein deposits and strands that mark the disease are expected to root in the brains of three times as many Americans aged 65 and older, the equivalent of Oregon’s and Virginia’s populations combined.

Age is not the sole predictor of Alzheimer’s. Soft-spoken, with a sling of closely trimmed gray whiskers cradling his face, 60-year-old J.R. Toungate grew up on Duval Street in Central Austin, where his mother still lives. Silver-rimmed eyeglasses on his refined nose reflect the sincerity in his downward-sloping, brown eyes. He helped around his father’s drugstore on the Drag bordering the University of Texas campus until he moved into the lumber business, where he remained for 20 years. When he was 18, friends set him up on a blind date with 16-year-old Alice, now his wife of 37 years.

In 2006, a neurologist determined early onset Alzheimer’s was slowly pilfering J.R.’s memories. Alice drops J.R. off on her way to work every morning and picks him up on her way home. He is the youngest in his adult day care facility. Early-onset Alzheimer’s or a related dementia strikes between 220,000 and 640,000 Americans before they turn 65, according to Alzheimer’s Association estimates.

Looking for the Culprit or Culprits

Researchers do not understand what causes the plaques and tangles, which are the prime suspects behind cell and tissue death in shrunken and shriveled Alzheimer’s brains. One of many culprits, and more likely a combination of them, is to blame.

“The thinking for decades was that everyone with Alzheimer’s has the plaques and tangles in the same regions for the same reasons, and they are at risk of developing the disease for the same reasons by the same mechanisms,” said Robert Barber, the Texas Alzheimer’s Research Consortium coordinator and professor of psychiatry and surgery at the University of North Texas Health Science Center in Fort Worth. “But that’s not the case. I think they are a common end stage, but there are lots of ways to acquire them.”

Alzheimer’s is the only top-10 cause of death in the United States that cannot be prevented, cured or slowed. Between 2000 and 2008, deaths from HIV, stroke, heart disease and prostate cancer declined from 8 percent to 29 percent, while Alzheimer’s deaths increased 66 percent, according to the 2011 Alzheimer’s Association Facts and Figures publication.

“In one sense we’re victims of our own success,” Barber said. “We keep the body alive longer, but the brain has not kept up. It takes a lot to keep the brain running well.”

Two studies recently published in Nature Genetics identify five genes involved in Alzheimer’s. More than 100 randomized, double-blind, placebo-controlled Alzheimer’s trials, the gold standard, have failed. Large-scale studies with 10 to 100 times the number of participants have shown trends, though the National Institutes of Health considers the quality of evidence low.

According to a 2010 statement issued at the April 2010 National Institute of Health Consensus Development Conference on Preventing Alzheimer’s, several factors are associated with Alzheimer’s disease and cognitive decline: old age, diabetes, high blood pressure, elevated cholesterol, certain genes, depression, never having been married, low social support and smoking. Estrogens and nonsteroidal anti-inflammatory drugs may increase risk. Physical activity, a diet low in saturated fat and high in fruits and vegetables, educational attainment and social interaction are associated with decreased risk for the disease.

“Walk briskly 20 minutes three times a week for three months, and the brain’s hippocampus region, which atrophies first and most substantially in Alzheimer’s, shows a significant increase in size,” Barber said. “It hasn’t been proven in a placebo-controlled trial yet, we don’t have an ironclad stamp of approval, but trials are going on right now.”

That effort has generated controversy since the NIH conference also said in its report that there aren’t any effective preventive strategies, Barber said.

The Effort in Texas

In 2005, the Texas Alzheimer’s Research Consortium was created by the decades-old Texas Council on Alzheimer’s Disease and Related Disorders. The state has invested more than $10 million in the consortium, which is composed of five state research institutions. Over the next two years, the council’s goal is to implement their first coordinated five-year plan to support science, prevention and brain health, disease management, care giving and infrastructure, said Chris Van Deusen, press officer with the state’s department of health services which is collaborating with the council.

The consortium’s most striking discovery, published in Archives of Neurology last year, is a diagnostic algorithm that uses a blood sample and basic demographics — age, gender, race, ethnicity and years of education — to diagnose the disease with more than 90 percent accuracy. An MRI, which is not available to those with pacemakers, and a spinal tap, which is invasive, painful and risky, are other ways to diagnose the disease.

“That’s a huge breakthrough, because right now diagnosis of Alzheimer’s in a typical family physician’s clinic is not very accurate. In fact, it’s only 80 to 90 percent accurate in a specialty clinic where Alzheimer’s is seen all the time,” Barber said.

Early diagnosis leads to better outcomes, which Barber said probably results from improved health care.

“After diagnosis, they begin to watch their diet, get exercise and go on medications that reduce symptoms that seem more effective the earlier started,” Barber said. “There is good reason to diagnose people early.”

What Families Miss

J.R. Toungate continues living at home with Alice and their 17-year-old son, Andrew. J.R. showers, dresses, makes the bed and plays with the cat every morning before he and Alice walk out the door at 6:45 a.m. When he returns from day care, he spends his evening surveying the yard or watching “American Idol.”

“He doesn’t mow the lawn or cook supper anymore, but he doesn’t grieve over it because he doesn’t remember he ever did it,” Alice said. “It’s not so bad. We’re OK. Andrew doesn’t know the same father Tyler and Ross knew, but it’s all he’s known, so he doesn’t know what he missed.”

During their 50 years of marriage, John Yeaman has said the same words to Margaret every time he leaves her: “Don’t do anything I wouldn’t do.”

Her saucy responses have been supplanted by vacant nods. Once in a while, in spite of the encroaching Alzheimer’s, she responds like she did in the old days.

“Oh yeah,” she sometimes says with that “you think so?” expression on her face.

John relishes those moments.