Without Warning: A Shared Bond
Group for early-onset Alzheimer’s disease helps loved ones, too
For the nearly 500,000 people in the United States who develop Alzheimer’s disease before they reach age 65, life can begin to take some unexpected turns. Although the memory loss and mental confusion the disease causes is devastating at any age, it presents a different set of challenges for people with early onset Alzheimer’s and their families. Rush University Medical Center in Chicago, Illinois, created the Without Warning group to help them address these challenges, give them a sense of connectedness and find a sense of purpose.
The importance of the shared bond among these families facing such unusual and difficult circumstances as early-onset Alzheimer’s disease is evident in the fact that some members come from as far away as Indiana, Michigan and Wisconsin to be part of the Without Warning group. The group meets once a month at a church in Elmhurst. The members divide into separate discussion sessions for the people with the illness and for their caregivers.
Another example of Rush’s compassion is that the Without Warning group also includes people with Alzheimer’s who no longer are able to participate in conversation. For those patients, Swanson holds a third session of music therapy during Without Warning meetings. “When you’re no longer able to sit around the table, most groups say you can’t come anymore, and we’re not going to that,” Smith says.
During the conversation sessions, group members discuss a variety of issues related to the disease, including its financial impact, its effect on children in the families and what it means to have hope in the face of the disease. “It gives me a chance to speak with others about their trials and tribulations,” Ron Pole says. “That’s the key to these meetings, gaining from the experiences of others.”
“It’s very helpful,” he continues. “You get an education from others who are actually dealing with the same situation. You can read about it in a book or on the Internet, but if you relate to something personally you can empathize and learn more that way.”
Without Warning also helps its participants find a sense of purpose when they are no longer able to work or perform many household tasks. Many of the group’s members have taken part in research studies at Rush that are trying to find treatments for the disease and understand it better. Without Warning members also are active in public policy issues related to their illness and have traveled to the state capital in Springfield to talk with legislators about obtaining funding for research into the disease.
“I’ve always been a go-go person,” says Bahr, who was a vice president at an insurance company before his illness forced him to leave his job. “This group gave me an outlet to do something. It’s really healthy for me. I couldn’t just sit around with nothing to do.”
Read more about early-onset Alzheimer’s disease in “Without Warning: Coping with Early-Onset Alzheimer’s Disease.”
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