Check It Out

A Positive, Adaptive Approach to Alzheimer’s

Tom Misciagna, who has dementia, participates in a Friday morning bowling league together with his wife, Peggy. The couple are among a growing number of people determined to face dementia care with a positive mindset. Photo by PETE MAROVICH / THE WASHINGTON POST.


by Tara Bahrampour
©2019, THE WASHINGTON POST

Tom and Peggy Misciagna were sitting in their Manassas, Virginia, home recently, talking about the children they adopted overseas in the 1980s, when Tom, 64, misremembered a major detail.

“We got two kids out of India—” he said.

Peggy, 59, chimed in. “Philippines.”

“Oh yeah, Philippines,” said Tom, a retired CIA officer. He grinned wryly at his wife. “That’s Ollie talking.”

Ollie is their nickname for Alzheimer’s, the disease Tom was diagnosed with seven years ago. For the Misciagnas, Ollie is a third presence in the house, one they never invited in. But since he’s here, they’re making room for him. And though it might seem counterintuitive, they are even trying to have fun with him.

That approach—giving the illness a nickname, smoothly zigging after hitting a zag—puts the Misciagnas in a growing camp of people determined
to approach dementia care differently, coming at it with a sense of openness, playfulness and even wonder.

. . . Without dismissing the difficulties of the disease, geriatricians and other experts are promoting a more adaptive approach, which they say can help caregivers and patients alike. It involves a lot of flexibility and willingness to expand one’s ideas of how things are supposed to be—even, crazy though it might sound, to see Alzheimer’s as a kind of gift.

. . . A 2016 pilot study in a Canadian nursing home found that dementia patients’ behavioral and psychological symptoms declined significantly and their quality-of-life scores improved significantly after 12 weeks of visits by “elder-clowns” who engaged with them using humor, empathy and improvisation. Caregivers, too, appear to benefit: A 2016 Australian study found dementia-care staff with positive attitudes and “person-centered” strategies felt more competent about their ability to provide care.

Although large-scale studies on positive approaches to dementia have yet to be done, a growing number of groups around the United States are embracing them.

. . . “Alzheimer’s can be a liberating event, an opportunity to fly,” said Jennifer Carson, director of the newly launched Dementia Engagement, Education and Research program at the University of Nevada at Reno. “This is in no way to dismiss the pain and suffering that comes from dementia, but to understand that a lot of that pain and suffering comes from the response.”

Carson believes much suffering comes from the social response after the diagnosis, what she describes as being treated as if you’re no longer there. “Tell someone they have dementia and then ignore them: That’s the suffering, way more than the tragedies that are intrinsic to dementia itself.”

■  ■  ■

[Karen] Stobbe, 54, has spent a third of her life as a caregiver, first for her father, who had Alzheimer’s and died in 2000, and then for her mother, who had the disease for 17 years and died last March . . .

“If someone says, ‘I want to go home,’ you can say, ‘Yes, and tell me about your home,’ or, ‘Yes, and it’s a little chilly; let’s get a sweater,’” she said. “What it is, is a Band-Aid for right then. It’s calming her down and saying, ‘Yes, I hear you.’”

■  ■  ■

Peggy is grateful for Tom’s ability to joke about his failing memory. Still, she has to constantly navigate how to talk with him about his limitations. “It’s almost like a child—if you tell a child, ‘You have to do this,’ well, they’re not going to do it . . . If we’re out doing the lawn and I keep saying, ‘Tom, do this, Tom do that,’ at some point he becomes a little rebellious, like a child. If I ask him to get some leaves, he’ll say, ‘No, I’ll do that later.’ A few minutes later, he’ll say, ‘What can I do to help?’ and I’ll say, ‘Can you go get those leaves over there?’ and then he’ll go over and do it.”

Keeping things loose and flowing is something Peggy does to make her own life easier. But it also puts Tom at ease. And it makes things more fun.

Like the day he was in the bathroom shaving and she heard him yell, “Oh my gosh, what have I done?”

He appeared in the doorway—with only one eyebrow.

“Can you fix it?” he asked.

“Nope,” she said, unable to stop laughing. “Just shave off the other one. It’s only an eyebrow.”

This article was edited for length.


SGI PRESIDENT IKEDA’S GUIDANCE

A Confident Life Is “the Way of Faith”

A men’s division member who had been practicing Nichiren Buddhism earnestly for many years became afflicted in his later years with Alzheimer’s disease. His wife and children were struggling to come to terms with his illness. Praising them for their heartfelt efforts to provide him with the care he needed, SGI President Ikeda warmly encouraged them as follows:

You have nothing to worry about. Even if the memories stored in his mind should fade and disappear, the good fortune and benefit accumulated in his life will endure forever. The efforts he made for kosen-rufu are eternal and indelible.

Your husband, your father, is engaged in a great struggle to put the finishing touches on his life, shouldering the mission of changing the karma of his entire family. I hope you will view his situation in this way, and continue to chant Nam-myoho-renge-kyo for him and warmly watch over him. There is absolutely no need to trouble yourselves with the question of why this has happened to him, or to worry about what other people might think.

From a certain perspective, perhaps you could say that your father is enjoying a pleasant dream right now. He has supported and taken care of many people, and now everyone is supporting and taking care of him. This is a wonderful state of life.

I know how difficult this must be for all of you, but you can positively transform this situation, changing poison into medicine without fail. That will be a source of encouragement for everyone.

Whatever unfolds, keep on living calmly and confidently, with your family and your fellow members. This is the way of faith. (December 2015 Living Buddhism, p. 48)