A UPenn class for dementia caregivers to get revitalized

Felicia Greenfield teaches a class for caregivers at the Penn Memory Center. "That feeling of aloneness goes away," said one caregiver who signed up soon after his wife was diagnosed with dementia.

Bill Manzi took a deep breath, and yet another. Breathe-in-the-nose, breathe-out-the-mouth deep breaths. Then he answered his wife Susan's question, the same one she had just asked but had forgotten due to dementia.

Susan Strohmetz is in the early stages of the disease. After she was diagnosed last year, Manzi almost immediately enrolled in a six-week-long caregiver class at the Penn Memory Center, where she is being treated (www.philly.com/memory).

Strohmetz, now 70 and retired, was diagnosed in 2014 with mild cognitive impairment. Both were devastated.

"When something like this occurs in life, the default for me is to isolate and feel alone, like this is only happening to me," said Manzi, 69, a retired West Chester business owner.

Their social worker at Penn recommended that he enroll in the class, and he learned techniques such as meditation, changing the topic of conversation, even adult coloring books, and doing things for himself.

Since the class, he has learned to laugh when his wife asks a question repeatedly. "Now, she laughs, too," he said. "We laugh together.

"The beauty of anything like this is that other people are involved with the same problem. That feeling of aloneness goes away. There's other people, there's support. That's powerful."

What happens to the caregivers of Alzheimer's and other dementia patients?

Many of them also lose their minds - in anger, exhaustion, burnout, and isolation. So Penn Memory Center set up the class to address their needs, said Felicia Greenfield, the center's director of clinical research operations and care programs.

Some quick figures on caregivers: They provided 17.9 billion hours of unpaid care in 2014, valued at $217.7 billion.

Two-thirds are women; one-third are 65 or older. About 30 percent have children under 18 living with them; almost half take care of their parents.

Among caregivers, 60 percent rate their emotional stress as "high" or "very high," and 40 percent suffer from depression.

As only the drowning understand, caregivers of those with dementia must learn to care for themselves first. "Communication, socialization, and bright light are on my list of five things you must do or consider in order to succeed as an Alzheimer's caregiver," noted Bob DeMarco, who blogs at Alzheimer's Reading Room (www.alzheimersreadingroom.com).

There are many causes of dementia, some reversible, such as vascular or thyroid conditions or vitamin deficiencies. However, most are not - they are degenerative diseases of the brain that get worse.

The most common cause is Alzheimer's, accounting for as many as 80 percent of all cases, DeMarco said.

Mary Ellen McNish, 69, found herself "yelling constantly" at husband Dave, 78, who suffers from Parkinson's-related cognitive impairment. A retired nonprofit executive, she also took the Penn caregiver class after "finding myself at my wit's end."

Sixteen years since his diagnosis, her frustration was boiling over.

"He went from being a Ph.D. economist to having difficulty figuring things out. It's been a loss of inches." She found herself "turning into a shrew - it wasn't me. This class transformed me."

She also learned about dementia and how "there's not a single solitary thing you can do about the disease. The only thing I can do is change the way I react to it. That helped me figure out how do we live the rest of our lives?"

"The class also gave me ideas on how to take care of myself. There's no other person who will take care of you but you - that's my first job."

One class exercise: Describe four things she did for herself, by herself, every day. Read the paper with coffee, breathe deeply, get a massage.

"We also learned to 'track,' or take apart incidents," she says. "What precipitated it? How could I have reacted to feel better?"

To avoid isolation, the McNishes live in Friends Center City Riverfront, a Quaker-based retirement community on Front Street.

They dine with other residents twice a week.

Bill Manzi, for his part, kayaks once a week when the weather is nice.

"I just try to do good for myself and do what's in front of me as far as Susan goes. She can still drive, she goes to the gym a few days a week."

Now, he said, "I look at her through the eyes of compassion. The patients tend to repeat themselves a lot or ask the same questions over and over. Before the class, it was very hard for me. I wondered, 'Why are you doing this? Why ask me the same questions?' Now I've learned it's part of the disease."

Manzi goes out for coffee and tells his wife "it was a good meeting." Then she'll ask again.

"I'll laugh and she knows that she's asked me before - we're learning to live with it, both of us."