About 90 percent of Americans who need long term care get it from unpaid family members. That puts a strain on a lot of relatives who have neither enough time nor the training to care for loved ones with brain disorders such as dementia.
So Dartmouth Hitchcock Medical Center in Lebanon, N.H., gives classes to family caregivers, and recruits actors to play the patients.
As the students in a recent workshop get a lecture on how to communicate with difficult patients, Mark Cookson is aging by the minute in an adjacent room. A make-up artist is spraying on about 30 years to his 50-something face.
Fake bags appear under his eyes, adhesive creases etch his forehead, and flesh-colored spray drains the natural color from his face. Cookson has played many roles in this simulation center. Today he’s portraying a crotchety old man with advanced Parkinson’s disease. And for this part, he can draw on personal life. His own mother died of Alzheimer’s only a few days ago. To honor her memory, he wants to keep teaching others to care for loved ones, as he did.
“It’s very close to my heart and it’s something that I hope to continue doing for quite a while if they continue the program, so it’s a privilege,” Cookson says, trying not to crack his pancake make-up.
In character, wearing a bathrobe and a frown, slumped in a chair in a simulated hospital room, he’s not quite so friendly. He spits out only a few words and stiffens as his caretaker, Tony Palazzo, tries to steer him into bed.
“Maybe we should go this way — you’re doing very well,” Palazzo volunteers.
“So are you,” Cookson says gruffly.
“I’m your brother,” Palazzo answers, following the scenario.
“I know,” Cookson snaps back, and tries to turn his back on his brotherly nurse.
After the scenario, Cookson meets Palazzo and two other students to discuss what went well — and not so well — in the fake hospital room. For example, Cookson says, they need to be more observant when patients have trouble speaking.
“I was giving non-verbal cues because you gave me medicine and I had no water to swallow it,” Cookson said. “So it was like, I almost spit it back in the cup, I left it in my mouth, I didn’t swallow it.
Reading body language is a big topic in this three-hour seminar, which also includes information about how the brain changes at the onset of dementia or Alzheimer’s and how to respond safely to challenging or dangerous behavior. Co-leader and nurse practitioner Justin Montgomery wants caregivers to see themselves, not just the faux patients, in action. So they watch videotapes of the simulations.
“They get a chance to watch and see what is their body language telling them, how are they interacting with the person around them based on posture and stance and all the ways we communicate without saying any words,” Montgomery explains.
He says people with dementia or Alzheimer’s sometimes get agitated if they see, for example, crossed arms, or a tense expression, on even the most caring relative.
DHMC is not the only research hospital that uses video-taped role play to teach medical care. UVM also employs actors, known in the trade as “standardized patients.” But Dartmouth has one of the oldest simulation training programs of its kind. It’s hoping to educate more family caregivers as long term care is increasingly provided in homes, rather than institutions.
According to a 2004 report from the National Center on Caregiving, there are more than 60,000 family caregivers in Vermont and more than 130,000 in New Hampshire.
That’s why it’s important, Dartmouth trainers say, for caregivers to take care of themselves as well as their patients. And research suggests that many are taking that advice. In fact, one study has found that taking care of family members can be good for your health.
“It’s so rewarding," says actor and former caregiver Mark Cookson.
But that doesn’t make it easy. Even parents who were tender and loving can become ill-tempered when their brain starts to fail. “Blame the disease,” the Dartmouth trainers say, “not the person.”
And when emotions escalate, they advise, step out of the scene, have a cup of coffee and return to the patient a few minutes later, ready for Act Two.