June 13, 2016
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From the packed parking lot of the Wilsonville Holiday Inn June 1, you might have guessed that a Clinton or a Trump were making an appearance.
But the reason more than 700 people were in attendance had little to do with politics. Instead it focused on an issue especially relevant to a city where almost 40 percent of residents are between age 25 and age 54: providing care to parents or others facing dementia, one of the most common conditions to come with age.
The free event hosted by Oregon Care Partners — which is funded by the state — was led by educator Teepa Snow, whose work in the field of dementia care has helped to change how informal and professional caregivers alike help to serve those living with the condition.
Snow, who lives in North Carolina, said that she developed an interest in caregiving partly as the result of watching her mother clash with her aging grandfather while attempting to provide him with care.
Initially interested in going to medical school, Snow decided after completing an undergraduate pre-med program that she didn’t want to be a doctor. She chose instead to pursue a master’s degree in occupational therapy at the University of North Carolina, Chapel Hill, and went on to spend over 30 years in the field, working as a caregiver, researcher and educator.
Dementia, Snow said, is on the rise. There a few readily identifiable reasons for that. For one thing, the greatest risk factor for developing dementia is age, and the average American lives far longer today than he or she might have a century ago.
There is also the Baby Boomer generation.
“Within 20 years, the Boomers are coming. The numbers of that group are going to overwhelm the system,” she said. “It’s going to hit us like a brick wall.”
Snow also said that the lifestyle adhered to by many Americans — with its high levels of stress, low levels of sleep and ubiquity of obesity and social isolation — is conducive to the development of dementia.
“I always use the phrase, ‘Having a little dementia is like being a little pregnant.’ You either are or you aren’t,” Snow said. “Once (dementia) starts, there’s a progression to it. There is no dementia that doesn’t progress. There is no dementia that doesn’t eventually kill you if nothing else does first.”
The challenge is to learn how to help those living with dementia to live how they want to. Snow emphasizes an empathic approach to providing care for those with dementia as a way of accomplishing that, and stresses the importance of patience. She says that practice is as much an art as a science, especially since studies have recently identified as many as 110 different types of dementia.
“My goal, and what I try to do, is to help people better appreciate the other side of the story, so that when I understand what a person is trying to do versus what I’m thinking is going on, I can choose different responses,” Snow said. “With dementia, it’s way too often about our reaction, and that’s what really causes distress.”
Snow has also worked to promote the sort of balance that is necessary for caregivers not to wear themselves out, which she says is both common and preventable for professional and family caregivers alike.
“Within about 40 percent of cases, we’ll lose a family caregiver within a year of the person they’ve cared for,” Snow said. She adds that the incidence of dementia, heart trouble and other health issues is much higher among caregivers than among the general population, which she links to the stress that comes with caregiving.
“We’ve got to start looking in the mirror, and saying, ‘This is self-perpetuating,'” Snow said.
Despite the dangers of dementia and the threat it poses to millions of Americans reaching their golden years, Snow said that there are some signs that the public perception of the disease is shifting. Oregon is at the forefront of that shift.
“You guys are organizing yourselves in a way that most states aren’t,” Snow said. Minnesota, Wisconsin and Oregon are national leaders when it comes to taking steps to address dementia, with the State of Oregon sponsoring programs like Oregon Care Partners.
Oregon Care Partners was founded with state funding in 2014, and offers trainings like the June 1 conference in Wilsonville that are intended to increase the quality of care for older Oregonians. Project Director Angie Neal said that OCP works with nonprofits like the Alzheimer’s Association and other entities to coordinate those programs.
“We’ve learned that through those collaborations, we reach more people than we could have on our own. So it’s kind of been a win-win for everybody,” Neal said.
At present, about 80 percent of the participants in OCP’s programs are professional caregivers, with 20 percent being family caregivers. The organization is working to change that, however, and Neal said that Snow was invited in part to help give family caregivers knowledge they could use immediately.
“A lot of what Teepa’s teaching is changing peoples’ perception of what it’s like to be a caregiver,” Neal said. The emphasis is on being a partner to the person who needs care, rather than an authority.
“You’re keeping their dignity, you’re keeping their independence as much as you can,” Neal said.