Alzheimer’s Assn. Graduation Club copes together
Leaning forward in his chair, Bob Patterson, 64, addresses a small group of his peers seated around a conference table. “You want to fill each day with something that’s relevant,” he says. “Live like it’s the last day of your life, whether you have a disease or not.”
His audience nods in agreement. Patterson’s philosophy resonates, and not without reason; like him, many of the other 17 participants were recently diagnosed with Alzheimer’s disease. The rest are caregivers, often spouses or other family members.
They’ve come together on a recent afternoon for a meeting of the Graduation Club, an Alzheimer’s Assn. support group that encourages members to discuss their hopes, fears and frustrations, many of which come from knowing the road that lies ahead.
“When I found out about my diagnosis, I cried my eyes out,” says Susan Franklin, who, at 61, is among the youngest at the meeting. “It helps me so much, knowing that people are in the same boat.”
The assocation also offers programs for people in later stages of Alzheimer’s, helping them adjust to the ongoing changes. But the early-stage program fills a special niche. Launched in 1999, it was one of the first in the country to address the needs of people with recent diagnoses.
At the time, research on the beginning stages of Alzheimer’s was scant, so the program was designed simply to give participants what they wanted or, rather, needed. For vibrant, engaged people hit with a devastating diagnosis, it seems what they most needed was someone to listen.
“The No. 1 thing that they asked for is support, No. 2 is information and No. 3 is accessible services,” says Debra Cherry, a clinical psychologist and the executive vice president of the Alzheimer’s Assn., California Southland chapter.
The early-stage programs and others offered by the association try to do all of that, providing a safe place to be heard; educational seminars and day trips; and access to practical advice on matters such as financial planning and end-of-life care.
Such programs aren’t designed to restore cognitive functioning or to slow the progression of the disease. Rather, they normalize the experience of Alzheimer’s, helping people still reeling from a diagnosis regain a sense of control, and offering a reminder that there’s still a lot of life to live.
Getting together
One of the most important aspects of the program is perhaps the simplest, and one from which many Alzheimer’s patients shy away: socialization.
“One of the tendencies that people with Alzheimer’s have is to become more withdrawn,” says Steven Arnold, a professor of psychiatry and neurology at the University of Pennsylvania and the director of the Penn Memory Center. “They can’t really keep up with conversations, so they tend to avoid those circumstances.”
Interacting with people who are sensitive to what they’re going through, he says, can comfort people with the disease and help alleviate that isolation, as well as the depression that the Alzheimer’s Assn. estimates affects 20%-40% of patients.
“Many people with early Alzheimer’s disease have remarkable insight that something is happening with them, and it can be very distressing,” Arnold says.
That’s not to say the organization’s gatherings only provide socialization. Trips to local museums, for example, also afford participants an outlet for self-expression and mental stimulation.
Designed by the association’s New York City chapter and copied elsewhere, such outings have been credited with improving participants’ moods and leading them to engage in more conversations. These improvements linger, making day-to-day life more enjoyable — and more reminiscent of how it once was — for both the person with the disease and the caregiver.
Deirdre Lashgari, a former professor of women’s literature and world literature who was diagnosed with Alzheimer’s two years ago, attends the bimonthly outings in Los Angeles with her husband. “The good thing about the art program is you have to actually say what moves you or bothers you about the painting,” she says. “I’m able to get in touch with what I feel about the art.”
As the disease progresses, such outings become difficult, and the needs of the patient and the caregiver change. Patients require more predictability, more attentive care and yet continued — if different — chances to interact with their peers.
Staying in touch
At the Opica Adult Day Care and Caregiver Support Center in West Los Angeles, attendees arrive at 10 a.m. and leave around 4 p.m., spending the day playing games, doing light exercises and engaging in such social activities as singalongs.
The consistency of a routine, says facility director Mary Michlovich, can be one of the few normalizing aspects for someone with dementia. “They are in a world that is slipping away and changing, so you try to maintain as much consistency and structure as you possibly can.”
But, for now, back at the Graduation Club meeting, participants keep the conversation light — even when discussing serious topics. When one group member announces that he can no longer write checks, others gently tease that, this way, he’ll spend less money.
The chance to see things from a different perspective, to take comfort in others’ understanding, to — in a word — cope, makes all the difference. And Franklin, for one, isn’t letting the disease get the best of her. Through the support and encouragement of the group, she’s become an advocate, speaking to college students, policymakers and others about the disease and the need for ongoing scientific research.
“I thought, OK, I can stay at home with my head under the covers,” she says, “or I can get out and do something.”