With the march of Alzheimer’s, an early-onset support group falls apart (from Pittsburgh Post-Gazette)

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By Gary Rotstein / Pittsburgh Post-Gazette

More than four years ago, Tom Michalko met for the first time with a group of other middle-aged men to share feelings about the devastating sentence they had received: younger-onset Alzheimer’s, a form of the dementia that strikes people before age 65.

A pastor, who had been required by then to give up his duties in Washington County, the Rev. Michalko and others afflicted in their 50s began talking about the premature end of their careers, changed relationships with their wives and children, concerns about losing their ability to drive and more.

One Monday morning each month since early 2008, the group created by the Pittsburgh office of the Alzheimer’s Association discussed common experiences while in the early stage of the disease. New members joined to add their own fears and frustrations since being diagnosed with Alzheimer’s or another form of dementia. Although brain disease in most cases had begun robbing them of their abilities to memorize or process information, it couldn’t block at the outset that very human instinct to converse and bond with others.

For most of the participants who have been meeting at the Sewickley Library, that’s over now. They began losing their ability to frame questions, explain themselves or even remember simple words. That happened to almost everyone except Rev. Michalko, a healthy outlier who learned recently that the support group he had always looked forward to attending 45 minutes from his Canton home no longer would meet. He was the only attendee at the May 7 meeting.

The Methodist minister thus became witness to the demise of a group he is partly credited with creating through persistent calls to the local Alzheimer’s Association after hearing of an early-stage, younger-onset support group meeting at that time in Tulsa, Okla.

“I just wanted to talk with another person who knew where I was coming from, who knew the path that I walked,” Rev. Michalko, now 56, explains in a slow, halting but clear and reasoned voice. He was first diagnosed with Alzheimer’s in 2005 while serving Claysville United Methodist Church and remains an active volunteer in church-related endeavors around Washington, Pa.

If other group members had remained as functional as Rev. Michalko, they’d still be meeting, but that’s not realistic with a progressive, incurable disease such as Alzheimer’s. The fact is, says local Alzheimer’s Association education and outreach coordinator Lois Lutz, some newcomers to the group actually were scared off by the condition of other longtime attendees.

“One emailed and said, ‘Thank you for the group, but we’re not ready to face that yet,’ meaning seeing how the other members were, how some can’t speak anymore,” said Ms. Lutz, who coordinated the group since the outset. “One of the newest members brought it up to me a couple months ago, like ‘I wish there were more people in the group who would talk.’ ”

Sessions once marked by banter and laughter among a half-dozen or more attendees — for some unexplained reason nearly always men — had devolved this year into dialogues between Ms. Lutz and Rev. Michalko and perhaps another participant or two. Others were present but may as well not have been. They were brought by wives who typically stay to hold their own support meeting in a different library room.

William Klunk, a psychiatry professor who is co-director of the University of Pittsburgh’s Alzheimer Disease Research Center, said it is common over several years for people with the disease not only to lose their verbal abilities but also to develop apathy about social interaction and become overwhelmed in group settings. There’s no way, however, of predicting the rate of such change for any individual.

“In the beginning, individuals in a group like this might have memory problems or trouble with complex executive tasks, but with a little help, they can get by fine and sit in a support group to talk about what they’re going through and their emotions,” Dr. Klunk said.

Eventually, he said, their memory function is likely to become so impaired that it’s like starting all over again each time they sit down together. And any information they do take in “becomes too complex to take in and process in a way where they come up with a sensible reply useful for carrying on conversation.”

Ms. Lutz said it was clear from the outset that decline of the group members’ abilities would likely someday be a factor, whether in forcing an end to individual participation or the group as a whole.

When she brought it up, she recalled, “Their response was, ‘We’ll leave that up to you.’ So we just let it go for all those years, and I am so pleased we were able to keep it going as long as we have.”

The support group began meeting two years after the Alzheimer’s Association launched a national initiative focused on services for people who were in the early stage of the disease. It had long emphasized support groups for caregivers — about 60 such groups exist in the 13 counties covered by the Pittsburgh office — but traditionally had little to offer dementia patients themselves.

Monica Moreno, director of the national association’s early-stage initiatives, said the group increasingly heard from people with the disease who wanted to learn more about it and interact with peers. Engaging them has become increasingly important because patients typically are diagnosed at an earlier stage of the disease than was common years ago, and medications have helped slow the loss of their functions.

“People in the early stage are still independent, they’re still engaged in life,” Ms. Moreno said. “Their needs are so different from those in the mid-to-late stages.”

The Pittsburgh office is undertaking some new efforts in the wake of ending its one longtime group for those with dementia. (Another support group for those with early-stage dementia, which catered to people of any age, failed to last more than a year in meetings at St. Stephens Church in Sewickley before disbanding.)

By mid-July, the local association expects to start an early-stage support group that will run for eight to 12 monthly evening sessions, rather than lasting indefinitely. It will encourage attendees to air their common concerns but will be open to those of any age, instead of just younger-onset. At the end of the defined period, a decision can be made about whether to continue and in what form, said Dee Stein, the association’s local family service coordinator.

“You have to have absolute flexibility when dealing with any dementia. That’s like, Alzheimer’s disease 101,” Ms. Stein said.

In addition, the association is starting a peer outreach program later this year in which volunteers who are in the early stages of dementia will be available by phone to help newly diagnosed individuals who want to hear from a person experienced with the disease.

Rev. Michalko, with a history of ministerial counseling, said he would consider participating as a peer volunteer as well as joining the new support group, although he also believes there has been added value from talking with other people his age rather than adults of his parents’ generation.

Rev. Michalko’s father had dementia, but he got it late in life and lived to 94. He knows that despite the loss of his career, he is lucky to be functioning so well for so long with a disease that he and his wife, Pat, believe is connected to brain trauma he suffered in a 1986 car accident.

His ability to take satisfaction in his own well-being has been tempered by the decline he has seen among his peers, a distinction that will be less evident to him now because the group he helped to create no longer meets.

“It is not nearly the blow that it would have been two years into this thing,” the pastor explained, “because I have weathered the storm for the most part, with the Lord’s help.”

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