Penn starts a 'café' for Alzheimer's patients and caregivers

Dementia can ruin a social life.

Friends don't know how to act around someone whose brain is failing, and people with dementia often withdraw as social situations get more confusing.

As a result, people with Alzheimer's or another memory-robbing dementia - and their caregivers - can become isolated.

Knowing that, Genevieve Ilg, a social-work graduate student who is interning at the Penn Memory Center, was intrigued when she read about "memory cafés," a European innovation that is slowly taking hold in the United States.

Also known as Alzheimer's cafés, they are informal gatherings meant to give people with the disease as well as their caregivers a safe place to socialize where everybody understands and accepts embarrassing symptoms and awful stress.

Some caregivers, Ilg said, are not comfortable taking their loved ones out, and then end up feeling trapped at home. She liked the idea of giving them a nonmedical place to meet with others in the same boat.

"We know that a key aspect of healthy aging is to have regular socialization," she said.

So, Ilg helped start a memory cafe. For now, it's only for memory center patients. Several couples and a few individuals came to the second monthly meeting - 90 minutes of mostly unstructured talk buoyed by donated coffee and cake - last week at the Christ Church Neighborhood House in Old City.

Ilg and her supervisor, Felicia Greenfield, director of clinical research operations and care programs, mingled while guests sat around a big table, a format that may change as the cafe matures. Ilg hopes to have live music and a comedian at future meetings.

Diane and Paul Cagan of Society Hill were there for the second time and already were big fans.

"It's absolutely great because of just getting to be social with people, but beside that, it's people that know what you're going through because they're going through it, too," said Diane Cagan, 78, a retired social worker.

After a long talk with another couple at the December meeting, she couldn't tell which of them had dementia. That was nice, she said.

"We were all aware of why we were here and who we are, but I don't think we were talking about the disease," she said. "We were just socializing."

Her husband, an 86-year-old pharmacist who ran his own drug store in Trenton for 50 years and later gave tours of City Hall, mostly sat quietly, but brightened whenever anyone sat down to talk with him. He was diagnosed with Alzheimer's four years ago.

"I enjoy it very much," he said of the meeting. "I love being with people and having fun."

The cafés are meant to be social events, not support groups. Organizers are urged to meet, if possible, in nonmedical places.

"I knew how important this was, to get away from the disease," said Jytte Fogh Lokvig, a Santa Fe, N.M., Alzheimer's expert who says she started this country's first memory cafe in 2008 and keeps a registry of others that have followed. There are now about 200.

"Once you really get into dementia, Alzheimer's, it takes over everything."

With their shared background, people who come to the cafe feel free to act more normally. "People leave the disease at the door," she said. "They can talk about it, but they talk about it the way they talk about a cold."

While it is normal for caregivers to grieve what they are losing, Lokvig, who is 77 and began work on her doctorate at 60, thinks the cafés help people go in a more positive direction: getting to know the new person their loved one has become. The cafés, she said, help "caregivers and family members look at the person as an individual and not as a 'victim' of a disease."

Susan Jewett, 68, came alone from Havertown after her husband, who was diagnosed with Alzheimer's a year ago, refused. She was still hoping he'd change his mind for the next meeting. "I'm losing him," she said matter of factly. "I've been trying lots of different things to keep some kind of engagement going other than to bring our friends to our home. So far, most of them have failed."

She was still glad to talk to other caregivers and people with memory problems.

"The whole world for me is divided between people who get it and people who are clueless," she said. "I appreciate both sides. I was clueless."

Bill and Susan Manzi, both in their late 60s, came from West Chester. He was feeling energized by his conversations with other caregivers and she said she was enjoying "the openness and sharing."

Dave Dyke, a former social worker who, at 66, has been diagnosed with mild cognitive impairment, told them why he is open about his diagnosis. Susan has been more reticent.

"I figure the more people that know what's going on with me, the better they understand how to deal with my lapses," he said. "If I forget somebody's name, I want them to understand it doesn't mean they're not important to me."

Dyke said he'd seen Bill Manzi at the memory center, but liked getting to know him socially.

"I've seen Bill dozens of times at this other group," he said, "and I never got a chance to talk to him."

sburling@phillynews.com

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