Erasing the Stigma of Alzheimer’s

DOWNERS GROVE, Ill. (May 2012) – Dr. Raj Shah is just as concerned with erasing the stigma of Alzheimer’s as he is about finding a cure. As Medical Director of the Rush Memory Clinic, he evaluates and treats people with memory loss, and he also is a principal investigator for clinical trials in Alzheimer’s Disease.

But it can be difficult to find people willing to participate in the studies. On Thursday, May 17, Dr. Shah and Barbara Eubeler, Research Study Coordinator, planned a presentation at Saratoga Grove Christian Retirement Community in Downers Grove, Illinois. Saratoga Grove opened a creative new Memory Support program in March, using World War II-era music, creative arts, and physical fitness to stimulate memories and improve quality of life. The Memory Support program includes a regular meetings for family members, in a format that allows them to interact with each other, share experiences, and learn from experts. These meetings typically involve 20 or more family members. When Dr. Shah offered to present at Saratoga Grove, Community Manager Tammy Virgili believed the May 17 Family Night would be the perfect audience for his message.

But perhaps because they are already sensitive to the stigma of Alzheimer’s Disease, or because the diagnosis is too recent to fully accept yet, family members chose not to attend. So Dr. Shah and Saratoga Grove staff members spent an hour discussing how Rush Alzheimer’s Disease Center is making slow, steady advancements in treating memory impairments, and how society’s response to memory disease needs to advance as well.

“Alzheimer’s Disease is a chronic disease, like diabetes, or high blood pressure,” says Dr. Shah. “It should not have a stigma.”

The stigma is especially dangerous when it prevents people from seeking treatment. Tammy told the story of one family who did not want their loved one to be part of Saratoga Grove’s Memory Support program “because then he would be labeled with that, even later if he needed nursing care or some other type of healthcare.”

Dr. Shah nodded in understanding, “Yes, people are afraid of the label. But we need to get to the point where we can say, ‘It doesn’t matter what the label is; you are still part of this community, and we respect you and care for you.’”

Tammy and her team have taken specific steps to create that kind of culture at Saratoga Grove. Rather than isolating people who are part of the Memory Support program, they encourage integration. Many of the second-floor residents eat in the main dining room on the first floor, for example, and first-floor residents often come upstairs for snacks and small talk in the new Cypress Café. In fact, the entire second floor has been designed so that it is attractive and welcoming for visitors, yet still safe for the people who live there. “The more people interact with each other,” says Tammy, “the better we understand each other. And understanding is what helps get rid of the stigma.”

Dr. Shah appreciates what places like Saratoga Grove are doing to erase the stigma of Alzheimer’s. He hopes this culture of acceptance will help overcome people’s resistance to participating in the research studies that are so critical to making progress toward an Alzheimer’s cure.

A current study that evaluates the effects of a once-a-day medication could help improve brain function in people with mild Alzheimer’s Disease. Participants will be asked to take a pill every morning for three months and to undergo two PET scans that will reveal any changes in brain function. There are no costs involved, and Rush makes participation as convenient as possible. People between 55 and 85 who have been clinically diagnosed with mild Alzheimer’s Disease can call Lindsay Franti for more information: (312) 563-4111.

“It’s exciting to have someone like Dr. Shah and Rush University working with us,” says Tammy. “They are such a resource, and we love to be able to offer that kind of expertise to our residents and their families. We’re already looking forward to the next time he can come back and share with us.”

Saratoga Grove is a Providence Life Services community located at 3460 Saratoga Avenue in Downers Grove, Illinois. Call (630) 971-1995 for more information about their Memory Support program.

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