Recently, Tom and Peggy Misciagna were sitting in their home in Manassas, Virginia, talking about the children they had adopted abroad in the 1980s when Tom, 64, recalled an important detail.
"We got two children out of India," he said.
Peggy, 59, agreed. "Philippines."
"Oh yes, Philippines," said Tom, a retired CIA officer. He grinned dryly at his wife. "That's Ollie talking."
Ollie is her nickname for Alzheimer's, the illness that diagnosed Tom seven years ago. For the Misciagnas, Ollie is a third presence in the house they have never been invited to. But since he's here, they make way for him. And while it may not seem intuitive, they even try to have fun with it.
This approach of nickling the illness and bickering after a blow puts the Misciagnas in a growing camp of people who are determined to deal with dementia differently, with a sense of openness, playfulness and even more Deal with wonder.
It is in sharp contrast to previous generations of Alzheimer's patients and their caregivers who saw the disease as something hidden. Even less than half of Alzheimer's patients are reported to have this disease, according to a 2015 Alzheimer's Association report, and a 2012 study found that it outperformed cancer as Americans were the most fearful to have. It was shrouded in shame and is in what Bill Thomas, a geriatrician who changes attitudes to old age, calls "the tragedy narrative."
"The most important framework America can deal with is this. , , that it is a terrible, destructive ride to descent and you then die, "he said. "That's factually true, but for families and elders, that's not very helpful."
Family members often try to get a loved one to find the right facts or to remember things correctly, but as the disease progresses, it can turn daily interaction into sombre and increasingly frustrating battles.
Instead, Thomas and others favor a more joyful approach that can help caregivers and patients alike. It involves a great deal of flexibility and a willingness to expand one's own ideas about how things should be – even if they are crazy, as it sounds – to regard Alzheimer's as a kind of gift.
Too much attention is paid to the medicalization of the diseasesaid Mary Fridley, co-creator of a workshop titled "The Joy of Dementia (you make a joke!") at the East Side Institute, an alternative research center for psychology and education in New York,
"Dementia is hugely painful," said Fridley, who wrote about caring for his mother, who had Alzheimer's and died a year ago. She added, "I truly believe there is a chance when people choose to be improvised, to be stupid, to play, to free themselves from the constraints of truth and knowledge and assumptions."
A 2016 pilot study in a Canadian nursing home found that the behavioral and mental symptoms of dementia patients declined significantly and their quality of life significantly improved after 12 weeks of visits by "older clowns", the humor, empathy and compassionate improvisation. The nurses also seem to benefit from this: An Australian study from 2016 found that dementia nurses with more positive attitudes and "person-centered" strategies were more competent in their care performance.
Although large-scale studies on positive approaches to dementia have not yet been carried out, an increasing number of groups in the United States are welcoming them.
Thomas's ChangingAging organization has a touring exhibition called "Disrupt Dementia," which explores the emotions associated with dementia. And in Seattle, a collective movement known as Momentia allows for social gatherings in cafés, museum tours, zoo walks, and even gibberish talks for people with dementia and caregivers.
This is familiar to Fridley. "With my mother, especially when she started to lose, she quoted her ability to speak, babbled her and the words were nonsensical, "she said.
Instead of relying on a fixed idea of the language, Fridley stopped worrying about it.
"Sometimes we made a poem together. She would say something and I would say something that rhymed with the quote, and then she would say something that rhymed, like "I'm dying"; "They are dying"; "I am eating"; "I eat before I die."
Jennifer Carson, director of the recently introduced dementia engagement, education and research program at the University of Nevada, Reno, is promoting this kind of commitment.
"Alzheimer's can be a liberating event, an opportunity to fly," she said. "This is not to dismiss the pain and suffering of dementia, but to understand that much of this pain and suffering comes from the reaction."
Carson believes that much suffering comes from the post-diagnosis social response, treating her as treated as if you were no longer there. "Tell someone that they have dementia and then ignore it: this is suffering, much more than the tragedies inherent in dementia itself."
That was the experience of Brian LeBlanc of Pensacola, Florida, who was diagnosed with Alzheimer's four years ago. People went up and addressed whoever I was and said, "How is he?" I turn to her and say, "I'm fine and I can still hear you," he said.
LeBlanc, 58, was painfully familiar with the disease – his mother, grandfather and great-grandmother – and his diagnosis was devastating. But he said, "I did not want to stay in this dark place."
His mother had never wanted to talk about her Alzheimer's disease and retired after her diagnosis. However, LeBlanc's background was in public relations and marketing. So he started doing what he knew best: traveling and talking, hoping to educate people about how Alzheimer's feels from the inside.
LeBlanc has used humor as a coping mechanism since the beginning of his diagnosis. After learning that he had the disease, a friend sent him a photo of a T-shirt with the following text:
"Roses are red
Violets are blue
I have Alzheimer's
Cheese on toasted bread. "
"I thought that was the funniest thing," he said. "That's the kind of thing that keeps me going. I get tired of the stigma of people saying I do not look like I have Alzheimer's. But the people who are really my friends will stay with me and joke and say, "Hey, do you have the $ 20 you owe me?" And then I have to stop and think, and they start to laugh. "
Rethink "idea of normal"
In a ballroom at a volunteer fire station in Walkersville, Md., Karen Stobbe saw the audience in November, including caregivers and family caregivers, mate. Some were with spouses with dementia. Stobbe showed them how to reflect each other's body movements and let their partners lead until the whole room was made up of arched arms and taut heads.
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 has had the disease for 17 years and died last March.
She had trained as an actress, and as she cared for her parents, she found that the skills of the theater vaccine worked for them as well – meeting them where they were and following their clues no matter how unexpected were.
As part of In the Moment, a non-profit Stobbe started training people in interactive dementia care. She turned to the 150 members of the Greater Maryland Chapter of the Alzheimer's Association.
Do not deny it; agree, she told them. Do not fight instead of resistance is the key to fruitful interactions. When a patient asks for something inappropriate or impossible instead of saying "no", say "yes" and "-" and then insert a suggestion that is feasible.
"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 cold, let's get a sweater," she said. What it is is a band aid for the right moment, it calms them down and says, "Yes, I hear you."
Staying positive for caregivers means letting go of expectations, Stobbe said. "We have this tendency where we want this person to be back in our world," she said. "We think it's not normal, so we want them to stop. If someone is sitting at the table tearing napkins and enjoying them, why not let them do it? Just because it's not our idea of normal? "
Instead, she said, it can be rewarding to get to know her world.
So, if you see a duck upside down or monkeys outside the window and "play the things that come out of your mouth because the edit button is off", everyone can relax and have fun. "Laugh or sing with them," she said, "and they see it's okay."
Fridley encourages people to see the nonlinear, often fictitious dialogues of Alzheimer's patients with the same expectations of poetry. "I think almost everyone agrees that the experience of writing and reading poetry differs from the experience of writing and reading a newspaper," she said. "Poetry is not true. I think most people see it as a game of language, and people accept it and love it because it allows us to connect in a non-cognitive way. "
She finally said that there are many things we do in everyday life that are not completely meaningful. "We dance dumb dances, we look at the moon, we fall in love, and all these things are wonderfully unreasonable."
Make things more fun
Recently, Tom and Peggy Misciagna were in Black America at Bowl America on Mathis Avenue with the Iron Eagles, a mixed Friday morning league. Tom, a well-built man with neatly cut salt and pepper hair, picked up a ball and leaned in to push it against the pins – the last picture of the day.
It was not a real strike, but it was close. His teammates cheered.
A small smile played on his face as he joined his wife on the bench.
"I became strong, right?"
"Good game," she said and her fingers joined for a second.
It was lunchtime. At Captain D's in Centerville Road they ordered their usual three-piece fish plate with shreds and talked about their lives and the way his illness changed them. How hard it was for him to tell people that he had it. Now, as they tell the story of how they met, he needs them to fill in the most important details that he once knew by heart.
Since his diagnosis, the couple has been trying to have fun together. Tom has added new activities such as darts and coloring books. He has never danced before. Now he and Peggy go to Square Dance. He has never played a musical instrument, but he has recorded the violin. And they joined the Forgotten Friends Choir in People with Dementia and their friends and carers, even though he had never sung before.
"Wait a minute, wait a minute," he interrupted. "When I was an altar, I had to sing."
"In Latin," Peggy added.
He grinned. "Not less in Latin."
Peggy is grateful for Tom's ability to joke about his failed memory. Nevertheless, she has to constantly navigate to talk to him about his limitations. "It's almost like a child – when you tell a kid," You have to do that, "well, they will not do it … When we're out on the lawn, I always say," Tom, do that Tom, do that. "Eventually he becomes a bit rebellious, like a kid, when I ask him for a few leaves, he says," No, I'll do that later. "A few minutes later, he says," What can I do "To help?", And I say: "Can you get the leaves over there?" And then he goes over and does it. & # 39;
Relaxing and making things flowing is something Peggy does to facilitate her own life. But it calms Tom too. And it's more fun.
Like the day he shaved in the bathroom and she heard him shout, "Oh my god, what have I done?"
He appeared in the door – with only one eyebrow.
"Can you fix that?" He asked.
"No," she said, unable to stop laughing. "Just shave off the other one. It's just an eyebrow. "