Tests can identify dementia earlier, but there's still no cure
Rich Sentner stood in front of the microwave, staring at the number pad.
"What are you doing, hon?" his wife asked, watching his indecision.
"I'm trying to press the number two," he said. "But I can't get my finger to do it."
That moment six years ago in their Mt. Lebanon home confirmed Erinn Sentner's worst suspicion: Something was wrong with her husband's mind.
Within weeks, doctors diagnosed the father of two young children with dementia — at the unlikely age of 36.
Dementia, a catch-all term for Alzheimer's disease and other brain disorders, has no known cure. Rapidly and irreversibly, it robbed Sentner of his mind and threw his family's future into a tailspin.
"I spent a lot of time being angry," said Erinn, 42, his wife of 14 years. "I spent a lot of time asking questions. 'Why me• Why is this happening to my kids?' This is not the life I anticipated for them."
Scientists are working to create ways to test patients for signs of dementia, including an imaging dye developed in Pittsburgh. Yet there is no guarantee that those identified as at-risk will develop symptoms. The uncertainty over the value of early testing prompted debate last month at the international conference of the Alzheimer's Association in Paris.
"We haven't hit the home run," said Dr. Daniel Alkon, scientific director of the Blanchette Rockefeller Neurosciences Institute at West Virginia University. "We haven't hit the target and that's the Holy Grail. That's what we're after."
People with dementia — 35.6 million worldwide in 2010 — often can't think well enough to solve problems or control their emotions. They have trouble remembering. They get confused. Eighty percent of those with dementia have Alzheimer's, which affects an estimated 5.4 million Americans, including some 400,000 in Pennsylvania.
In the absence of a cure, medicines can halt or slow dementia's progression. Most doctors point to this as a reason that early detection is crucial.
Leo Campbell, 80, of Penn Hills encouraged his wife, Helen, to undergo screening for Alzheimer's disease in 2007. Three of her family members developed Alzheimer's, and her brother's deterioration was especially hard to watch, the Campbells said. At 77, Helen worried she was genetically destined to go down that path.
Memory tests UPMC doctors conducted revealed Helen Campbell has early-stage Alzheimer's. She takes Aricept and Namenda, two medications designed to slow the disease's progression. The Campbells believe they've worked. She no longer cooks and drives alone only on routes she knows well, but she remains healthy enough to play golf twice a week: Thursdays with girlfriends in the Cloverbelles League, and Sundays with her husband.
"If it doesn't get worse, I'll be happy," she said. "I'd hate to see the day when he has to take care of me."
"You won't be a burden," Leo quickly chimed.
The Sentners did not have the benefit of early diagnosis.
Rich Sentner grew up in Baldwin and majored in art at Westminster College. He held several jobs after graduation, including selling health insurance for Aetna. In 2004, he lost a job working in sales for a payroll company and spent two years searching for employment.
He became withdrawn and moody. His wife attributed that to depression.
Soon, however, his behavior became erratic, his family said. He would wear dress shoes with shorts to mow the lawn; watch cartoons with more fascination than his young children; and tire when performing basic tasks.
On a cruise, he left his wife in the room so she could nap. Hours later, when she found him wandering on deck, he confessed he could not find his way back to their room. During family drives, Sentner would make several wrong turns; Erinn thought he was just choosing back roads.
"I'd say, 'Erinn, is there something wrong?' " said her mother, Mary Lou Dickson, a retired clinical psychologist. "She'd say, 'Oh, he just hasn't had his coffee.' She was in denial. But it didn't seem normal to me. This was more than either depression or anxiety."
Erinn accompanied her husband to a psychologist, who prescribed medication. At one point, Rich took 40 pills a day, including antidepressants, vitamins and the cholesterol-lowering drug Lipitor because doctors suspected a vascular problem.
"A lot of time was wasted and that was disturbing to me," Dickson said.
So much time passed that when doctors finally diagnosed him with dementia, Sentner did not understand.
"I remember sitting with Rich and I told him what the doctor said," his wife said. "He laughed about it. He thought I was joking. I'm almost grateful for that. He didn't go into some kind of deep depression, because he couldn't even comprehend what was happening."
The day Rich Sentner's doctor told him he could not drive anymore, Erinn cried as she drove her husband home. Rich sat beside her, confused by her tears.
"If he had cancer, you'd have time to have the conversation," she said. "With this, he didn't get that. By the time he got the diagnosis, he was at a point where he didn't comprehend the diagnosis."
Rich is confined to a wheelchair and lives in a skilled nursing facility near his home. He cannot walk; he cannot feed or bathe himself. He recognizes his wife and children but cannot hold conversations. His vocabulary primarily consists of these words: yeah , sure , no and who knows .
At his 42nd birthday party last month, his children and close friends played board games on a patio while Rich watched. He didn't interact much, except for eye contact and smiles. Though family members doubt he understood their questions, he responded with a short laugh and hearty, "Sure, sure."
"It's tragic," said Dr. Oscar Lopez, director of the University of Pittsburgh's Alzheimer's Disease Research Center. "These are people who are at the peak of their lives, the peak of where they can be useful to society and to their loved ones, and everything starts falling apart ... and there's nothing that they can do."
Researchers say they are closer than ever to finding answers about Alzheimer's. They have focused on ways to identify plaque that builds up in brain tissue in those suffering from the illness. Sentner's doctors ruled out Alzheimer's disease after discovering no plaque in his brain.
Lopez cautioned that temporary memory loss does not necessarily indicate dementia. "Anybody can lose his/her car keys," he said, adding that a person who recognizes a memory lapse does not have dementia.
"In early Alzheimer's disease there is a sense of unawareness, and it is usually the patient's family who detect this problem," he said.
Dementia, he said, can have other causes, including "a wide variety of diseases" and head injury.
Drs. William Klunk and Chester Mathis of the University of Pittsburgh developed Pittsburgh Compound B, or PiB, a radioactive imaging dye that enables doctors to view the brain plaque. Federal regulators could grant approval for the dye within a year or two, Klunk said. When that happens, he expects imaging tests to become routine on people with no symptoms.
"If we had to wait until someone had metastatic cancer that was coming through their skin before we can test the cancer drugs, none of those drugs would work very well," said Klunk, co-director of Pitt's Alzheimer's center. "If we test them at the earliest stages, they work much better. I suspect the same is going to happen with Alzheimer's disease."
In April, the Alzheimer's Association and the National Institute of Aging issued guidelines that recognize three phases of Alzheimer's: a preclinical stage, in which tests determine brain plaque buildup even when a person has no symptoms; mild cognitive impairment reflected by small changes in behavior, memory and thinking; and the onset of dementia, in which symptoms are so damaging the person no longer can function.
The preclinical stage validates the need to diagnose dementia early, experts said, but they add that knowing is not curing.
"We need drugs that are actually going to address this disease early, not just ameliorate the symptoms but address the disease," said WVU's Alkon, who is leading efforts to help clinicians make more accurate diagnoses.
Knowing they are at risk for developing dementia might help people plan for the future, said Dr. Carol Schramke, a director of behavioral neurology at Allegheny General Hospital in the North Side. She encouraged anyone who experiences memory trouble to get a check-up.
"You don't want to miss the people that we can fix, even if they are a relatively small percentage," Schramke said.
Erinn Sentner works for Julian Gray, a Moon-based attorney who specializes in elder law. As education and outreach coordinator, Erinn helps people going through dementia diagnoses in making wise financial decisions.
She does not know how her husband's disease will progress. "We just have to watch and adapt," she said.
The Sentners' daughter, Anna, 11, once asked her if there was a name for what is happening to her father.
"There's a part of daddy's brain that is not working and it's going to get worse, and it's not something the doctors can do much about," he mother said.
This summer, the couple's son, Evan, 8, wanted to see pictures of himself as a baby. Erinn popped in a family video and sat with her children in the living room. The screen lit up with images of Rich introducing Anna to her baby brother at the hospital.
Erinn and Anna burst into tears.
"To hear Rich doting on Anna and calling her 'Pallie,' which is what he called her, really did it for me," Erinn said.
Evan couldn't understand why they were crying. To him, his Dad always has been the way he is.Additional Information:
Alzheimer's public meeting
The Alzheimer's Association, Greater Pennsylvania Chapter, will hold a meeting from 6 to 8 p.m. Wednesday at Country Meadows Retirement Community, 3575 Washington Pike, Bridgeville, so people can suggest issues that need to be addressed to help those impacted by Alzheimer's disease.
The U.S. Department of Health and Human Services will use the public comments to help develop a national plan to address growing rates of the disease. Similar meetings will take place across the nation as provided by the National Alzheimer's Project Act (Public Law 111-375).
To learn more, or to submit comments for consideration, visit www.alz.org/napa .