Giving Alzheimer’s Purpose: Transforming traditional support groups

Alzheimer’s disease has come out of hiding in the past few years. Thanks to some wonderful advocacy work, people are no longer ashamed to talk about it. This increased knowledge and education about Alzheimer’s has led to the disease being diagnosed earlier and earlier. Now advocates are taking the next step to help those who receive an early diagnosis. And their treatment of choice is GAP, a group dedicated to not only to support, but also to
helping people slow the progression of the disease.

GAP focuses on community and interaction; stepping in where traditional medicine leaves off. It started out with only a few small groups in Connecticut, but has since spread nationwide. Tania Paparazzo, southwest regional director at the Alzheimer’s Association Connecticut Chapter, heads one of the founding groups in Norwalk, Connecticut. The group is in its second year and Paparazzo hopes it is much more than just a support group. “I hope the group is empowering to them. I hope that we do give the freedom to decide what they want to do instead of saying you are coming to this. Hopefully they go away feeling supported, that they are not alone, and that they feel empowered to do more things on their own.”

GAP allows Alzheimer’s patients to socialize with others in the same situation. According to Paparazzo, the support stems naturally from this connection, allowing the group to focus on other activities. Rather than rely on a set curriculum, members decide upon each meeting’s activities. One gentleman reflected on his time in GAP saying “It’s so powerful for me to be here with other people that are going through this and hear their point of view on it.”

The group meets semiweekly and every meeting brings a different challenge or experience to keep attendees’ minds sharp. Since GAP members’ memory and cognitive faculties differ, activities are always catered to fit those attending that week. Some meetings focus is on brain activities, such as word puzzles and trivia games, while others focus on physical aspects, such as a yoga day.

Outings to museums and lectures on gardening are just as important to GAP to provide support and interaction. This unique approach allows for greater freedom and support than the traditional support group model. Paparazzo hopes this structure helps everyone to feel more empowered amid an overwhelming situation. “And every meeting includes lunch, because who
doesn’t like free food?” as Paparazzo happily put it.

Members find GAP through two main sources: a support line and doctors. The Alzheimer’s Association runs a 24/7 help line where people can turn for information and help. Many call after being diagnosed and are introduced to GAP. Recently, it is the doctors who are sending patients GAP’s way, a change Paparazzo attributes to an increasing focus on doctor education by the Alzheimer’s Association.

Since GAP focuses on those in the earliest stages of the disease, potential members are evaluated by a social worker to see if they would be a good fit for the group. They must be able to take part in conversations and willing to talk about the disease. As a member progresses past the early stages, they transition to adult day-care centers and, depending upon their condition, possibly even nursing homes.

Unfortunately, there is no group at the moment for those in the mid-stages of the disease. But thanks to these outspoken advocates, Alzheimer’s patients no longer have to start their journey alone. One member
summed up the group’s attitude in one simple statement: “People wear T-shirts that say ‘Cancer Survivor.’ Well one day, I want to wear one that says ‘Alzheimer’s Survivor’.”