Early-onset Alzheimer's is an unexpected blow for those in their prime
Second of two parts
December 1, 2008 10:00 AM
Alan Romatowski, second from left, with stepdaughter Katie, 26, and sons Yuri, 15, and Marek, 20, during the Memory Walk at the Pittsburgh zoo on Oct. 11.
Alan Romatowski, who has early-onset Alzheimer's disease, attempts to arrange blocks into a pattern during a recent test at the University of Pittsburgh Alzheimer Disease Research Center at UPMC Montefiore in Pittsburgh.
By Gary Rotstein Pittsburgh Post-Gazette
It took five months after Alan Romatowski began seeing doctors about cockpit confusion before one of them surmised that the airline pilot had Alzheimer's disease, and twice that long before he received an official diagnosis.
No one was really looking for Alzheimer's in 2006 in an active man in his mid-50s -- not his physicians, not his family, and certainly not Mr. Romatowski himself. Like many younger patients, he was in denial about serious problems.
"I thought it was stress," the Middlesex, Butler County, resident recalled of his reaction to difficulties with memory and analytical tasks. Sophisticated brain imagery and tests of his mental functioning eventually provided a neurologist's confident diagnosis 15 months ago that he had "early-onset" Alzheimer's, the term for affliction of those younger than 65.
Mr. Romatowski has since become an articulate local spokesman for individuals with the disease, while receiving disability payments from US Airways. One of his missions while serving on a 14-member advisory panel of the national Alzheimer's Association is to increase awareness among physicians of dementia in patients his age, so medications and counseling can more quickly reach those who would benefit.
As wrenching as the disease is for the typical, late-life patient who experiences it, the diagnosis can be far more devastating to people who presumed they had at least a third of their years yet to enjoy. If diagnosed early, they become acutely and frighteningly aware of the death sentence they have received, since the disease is thus far incurable.
"Although subtle in attack, Alzheimer's is the closest thing to being eaten alive slowly. ... You watch helplessly as you slowly lose yourself," writer Thomas DeBaggio, an herb grower who was diagnosed at age 57, explained a decade ago in an eloquent first-person account titled "Losing My Mind."
Numbers alone would seem to dictate diagnoses of Alzheimer's will increase in people who are still working, raising children and thinking of themselves as productive. Presently, only several hundred thousand of the nation's estimated 5.2 million Alzheimer's cases are people under age 65, as advancing age is the No. 1 factor that increases risk for the disease.
But more people in their 50s and early 60s are alive than ever before, due to the baby boom. Looking ahead to when they're in their 80s and beyond, researchers are predicting there will be two to three times as many Alzheimer's cases in 2050 as today.
More "young" cases should show up long before then, experts say, from people who are more demonstrative about wanting help since they see themselves still in the prime of their lives. The Alzheimer's Association has sought to highlight the situations of people like Mr. Romatowski, as well as older people who are still in the early stage of the disease and able to function, to attack perceptions that everyone with the disease is helpless.
"These are people who are not dying from Alzheimer's, but living with Alzheimer's," said Dr. Peter Reed, senior director of programs for the national association. "They can still take part in things, play an active role in defining their abilities."
After Mr. Romatowski's diagnosis in 2007, his wife Josie sought help coping from the association's local chapter. She was directed to a support group at an assisted-living center near them, only to realize all of the spouses and children there were talking about memory-impaired family members in their 70s and 80s. She couldn't relate.
"I didn't know anything about what to do," she said, having no experience at her age with anyone with Alzheimer's, let alone her husband. She only found support and understanding when the Alzheimer's chapter early this year started its first monthly meetings specifically for patients and spouses in the initial stages of early-onset.
Dr. Steven DeKosky, a neurologist and Alzheimer's researcher, said it was somewhat common in the past for physicians to assume drug or alcohol abuse was the cause of increased confusion and memory loss among non-elderly patients. Greater awareness of the disease has reduced the misdiagnosis. He said there are still plenty of instances, however, when middle-aged people silently have dementia that no one knows to test for.
They're sometimes fired from jobs for incompetency, cutting off access to disability insurance at a time when they're too young for Medicare.
"The big issues are they may still be the family's bread-winner, and they're frequently not eligible for health care or help through the safety net," observed Dr. DeKosky, dean of the University of Virginia School of Medicine.
He formerly headed the University of Pittsburgh's Alzheimer Disease Research Center, where doctors say the number of early-onset cases they see is increasing. About 25 percent to 30 percent of the center's new patients are younger than 65, a higher percentage than would be the case elsewhere since it is a regional specialty clinic.
The center's officials said that with several medications now helpful in addressing symptoms, patients have incentive to seek treatment more quickly than would have been the case years ago.
Dr. Judith Saxton, a neuropsychologist who is co-director of the center, said it is still common for many patients and their families to brush off what could be early signs of the disease for as long as several years until impairments start hindering someone's daily life. The victims themselves may have self-esteem issues about admitting their troubles; relatives may unwittingly take part in "ageism," viewing serious symptoms as a normal part of aging instead of disease.
"If we all got tested every year as part of our jobs, we'd all be diagnosed much faster," she said.
In that sense, Mr. Romatowski is luckier than some. While it took 10 months of visits to a family physician, psychologist, psychiatrist, neuropsychologist and neurologist before getting a firm diagnosis, it might have been years before he sought such evaluations if he weren't forced to do so as an airline pilot.
He knows his future is not bright, but he also has been taking medication for more than a year that is helping minimize his loss of memory and functioning. His affliction with Alzheimer's goes unnoticed by others, unless he mentions it to them. But as a spokesman, he realizes, the more people who hear about it from him, the better.