By Ann Silversides, an award-winning health journalist based in Perth, Ontario. Reprinted with permission from www.Alzlive.com, a free, daily, digital lifestyle and news platform designed specifically for the unpaid family caregivers of Alzheimer’s and dementia patients.
Occupational therapist Teepa Snow slips into “becoming” a person with dementia and directly challenges participants at her workshops.
“This is not my home,” she might blurt, bending over and staring hard at a person in the front row. “Why did you bring me here?” she shouts. She pauses, looks away, looks back and fires off: “I hate you!”
Her “show don’t tell” approach to communicating information about dementia is visceral and effective. The person in the audience who is the “target” of her encounter is often visibly unsettled and the interaction sets up a learning opportunity.
Snow is a dementia education and care specialist from North Carolina whose teaching style has won her fervent admirers in the caregiver community in North America. A tireless advocate, she is determined to better the lives of people with dementia (and the lives of their caregivers) by sharing what she has learned. She has spent more than 30 years working with people with dementia, figuring out what helps them, and fine-tuning ways to engage her audience.
(You can watch her in action: segments from many of her presentations are available on her own channel on YouTube.)
“I see people’s lives being torn apart now. We need
risk reduction”
Snow, 60, is on the road about 300 days a year, travelling across the United States and Canada and giving presentations and work shops to groups ranging in size from 30 to 2,000. She’s booked months in advance.
Until seven years ago, she was putting in long hours as education director at the Alzheimer’s Association in North Carolina, conducting about 140 local workshops a year and responding to national and international requests. “It just got too crazy and I was trying to help in too many ways. So I opted to reach out to a broader audience.”
She has kept up the pace for the last seven years because she is on a mission. “I am just so frustrated that there seems to be no political will to dig in and prepare for what lies ahead”— namely the growing proportion of the population that will be elderly and hence the increased numbers of people with dementia.
The political attitude seems to be that scientists will discover a magic bullet to eliminate or cure dementia, she says, and so the task of planning services to address this crisis has been neglected.
“I see people’s lives being torn apart now. We need risk reduction.” To further her activism, she joined with the U.S. Dementia Action Alliance, which is affiliated with the World Health Organization’s Global Alzheimer’s and Dementia Action Alliance.
Snow has developed a classification system called Gems, which is based on her philosophy “to meet people where they are” and the understanding that “the task is not more important than the relationship.”
“You can change the environment, the task, or your own behaviour”
The Gems system describes six stages of dementia and, for each stage, sheds light on what people with dementia are experiencing, and on appropriate caregiving strategies.
Sapphire is the first stage, characterized by changing abilities that are creating new challenges in life, and caregivers should “allow processing time and discuss, not demand.” The last stage is Pearl, where the individual is “hidden in a shell, immobile, reflexive” and caregivers should use a soft voice and interact with “slow rhythmic movement.”
Snow explains that she has learned from trial-and-error caring for people living with dementia. She has also studied the neurophysiology of what happens in the brains of people whose dementia results from conditions such as long-term alcoholism, Parkinson’s or Alzheimer’s. “But I try to stay away from jargon. If I use a lot of fancy words, it creates distance with my audience.”
In the same way, Snow doesn’t set herself apart from her audience — she dresses in a trademark shirt and slacks, with her greying hair pulled back in a pony tail. She got her unusual first name when she was a teenager, working with an autistic boy who couldn’t pronounce, Teena, her given name. He called her Teepa, her family and friends began doing the same, and she legally changed her name.
Here’s how she explains her teaching style: “I interact and role play, and if I can get people to recognize someone — ‘Hey, that’s just like the woman in room 107!’ — then what I share has much more immediacy, and participants are a lot more interested in what happens next.”
For example, the angry woman with dementia that Snow portrays, startling her audience? This woman may in fact be in her own home, but she thinks that “home” is the house she grew up in; she “is” a young girl again, and she’s scared.
Snow might show how to hold this woman’s hand in a calming and reassuring way, or demonstrate that, in a difficult encounter, you need to take one step back and several deep breaths. “Your brain works better than her brain: you need to figure out how to interact — you can change the environment, the task, or your own behaviour.”
In this way, Snow provides insight into what a person with dementia might be thinking and feeling, and demonstrates ways to avoid or defuse confusing and hostile situations. Participants become willing to try different approaches.
Teepa Snow manages to
decode dementia in a captivating and painfully honest way.
“There’s a kind of attitude shaping that occurs,” says Christine Stardom, executive director of the A.S.K. Friendship Society in Vancouver, B.C., who has witnessed the Snow effect first-hand.
A.S.K. runs a small day program (25 to 35 people) for people with dementia, and is bringing Snow to give two day-long sessions this fall. A few of the centre’s caregivers have attended these sessions before.
Snow has also developed the Positive Approach Certification, a “train the trainer” program for working with people who have dementia. Eighty people in Sydney, N.S., are completing the program now, which was partly organized by Brian McIssac, who is with the seniors’ mental health department of the Cape Breton District Health Authority.
“As nurses, we are task oriented,” he says. “But when we see people react with fear and agitation, we are learning to understand the deeper meaning behind the behaviour.”
And the indefatigable woman, who has clinical appointments with Duke University’s School of Nursing and UNC-Chapel Hill’s School of Medicine, was a key speaker at the inaugural Caregiver Show in Toronto, mid-May.
Snow has teamed up with the Florida-based non-profit Pines Education Institute, which helps to distribute 14 DVDs that feature her teaching sessions. The institute has sent DVDs to 23 different countries, says Pines executive director JoAnn Westbrook. Now, Snow and Westbrook have set up the Dementia Care Academy with plans to facilitate more distance learning by streaming the videos.
Snow’s fans are legion. “Teepa Snow manages to decode dementia in a captivating and painfully honest way,” says Romina Oliverio, a dementia consultant in Toronto. “She infuses her talk with humour and gets people participating. She communicates in a way that is not medicalized and not complicated.”
Ann Silversides is an award-winning health journalist based in Perth, Ontario.
941-309-5760
Pines of Sarasota, 1501 N. Orange Ave., Sarasota, Florida 34236
www.dementiacareacademy.com