Reprinted with permission of Philadelphia Inquirer, Sunday, January 31, 2016
Expect to say “I’m sorry” a lot if you decide to try one of the trendier ways to communicate with people who have Alzheimer’s.
There was a time when caregivers tried orienting people with dementia to reality. That often feels like the natural thing to do. “No, Mom, I actually did tell you that. Like, five times.”
But at Daylesford Crossing, an assisted-living facility in Paoli, workers are more likely to just go with it if a resident has some strange ideas.
Let’s say Mom or Grandma is furiously accusing her neighbor of stealing something. Your first impulse may be to defend the neighbor, but that would just make things worse, said Kathleen Douglass, administrator and dementia specialist at Sage Senior Living, which opened Daylesford five months ago.
“I’m sorry that happened to you,” is a better answer, she said. Then you can show you’ve heard the emotion. “You seem really angry. I would be angry too if that happened.”
It’s time to give up thinking your truth and rationality will change the mind of someone with dementia. “She’s never going to be able to process that again,” Douglass said. “She’s in brain failure.”
Teepa Snow, originator of this “positive approach to care,” was in Daylesford this month to train about 50 staffers from Sage facilities and some family members in her principles. A Pittsburgh native who moved to North Carolina 45 years ago and who has a Southern accent to show for it, Snow demonstrated how brain damage from dementia affects behavior and offered hands-on tips to help caregivers fill in the gaps.
Her message: The more the person with dementia loses his brain, the more those around him have to use theirs.
Snow’s goal is to help caregivers make use of what’s still working in the brain and compensate for what isn’t. “Instead of focusing on the hole, we need to be looking at the doughnut,” she said.
Krista McKay, director of programs and services for the Alzheimer’s Association Delaware Valley chapter, said Snow is among a group of dementia experts who espouse a more person-centered philosophy – look at the person, not the disease. The approach, which the association has endorsed for years, has been slow to take off but is gaining traction.
“I would say that it’s taking root in a lot of ways, the care philosophy,” she said. “The issue at hand is whether it’s being applied.”
Older approaches, she said, make it a priority to feed residents three meals a day, dress them appropriately, and take care of their toileting needs. The new one, which requires more staff, places greater emphasis on personal relationships, reminiscence, and activities that draw out what a patient still cares about. “We have to go with that person along their journey as opposed to bringing them back,” she said.
Douglass added that the old approach relied more heavily on using medication to address problem behaviors. That’s less likely to be necessary when people’s needs are being met.
With the aid of pictures that showed how the brain atrophies during dementia, Snow, an occupational therapist, explained why these patients are often frightened or resistant.
Their hearing may be fine, but they can’t make sense of the words, so speaking more loudly only startles or annoys them.
Their visual field narrows considerably, especially when they are frightened. A 20-year-old’s peripheral vision can detect his moving fingers if he stretches his hands straight out to the side, but someone in the midstage of dementia can see only between two arms thrust straight forward. That means it’s easy for someone with dementia to think you’re sneaking up on him. If you stand right in front of him, you’re blocking his full visual field, which can feel threatening. It’s best to greet from a distance and then approach from the side.
Later in the course of the disease, the brain begins using visual messages from only one eye, throwing depth perception way off and increasing the risk of falling.
Because of damage to the frontal lobe, people with dementia often have trouble initiating an action, such as picking up a fork to eat. If you help them start, they may be able to keep going.
Snow said people with dementia lose the ability to use and understand complex speech. Long after that’s gone, they may retain their sense of rhythm, the ability to dance and sing, and to make chitchat. These can be paths to happy experiences and they’re a lot healthier than a common source of a quick high: sugar.
Dementia patients also still remember swear words and racial slurs – Snow said they’re housed in a different part of the brain from complex language – and they use them. Another thing that isn’t working is the brain’s brake.
A high-energy presenter with a flair for the dramatic, Snow convincingly modeled different neurological deficits. She drew knowing looks from people in the audience who had no trouble thinking of specific residents she resembled. Most often, she was a shuffling, hunched, cantankerous woman who took offense quickly or did inappropriate things like fondling the shiny bald head of one worker and swearing prodigiously.
In one common scenario, she played a woman who pitched a fit when a worker tried to bring a new woman to her table in the cafeteria. Then Snow explained what this queen bee of the table might have been like. Before she got sick, she likely was an introvert who was always in control. Introverts, she said, are territorial.
The worker should have come to her before lunch and said, “I have a huge favor to ask of you.” She would describe how this new person needed a place to sit and needed to be with someone skillful. “What do you think?”
At that point, the queen bee likely would volunteer to accept the new resident, but, because of her memory problems, that’s not the end of it. Before the meal started, the worker would need to bring the new resident directly to the woman for the first introduction before actually showing her a chair.
Then there’s the guy who complains that his table never gets served first. Even though the facility goes out of its way to make sure every table is served first sometimes, the important thing is what he thinks. The facts, which he can’t remember or understand, won’t sway him.
“I’m so sorry,” Snow would tell him. “That’s not all right. That shouldn’t be happening. I’m so sorry. You’re not getting served first, ever?”
Then she said that, unless there are two tables with people who really care about when they’re served, it’s OK just to serve that guy’s table first.
One of her most counterintuitive examples was of a woman who shuffled up to a worker saying, “I need something.”
“What do you need?” the worker asked helpfully. First mistake. The woman didn’t know and that forced her to admit it. She struggled to find the words to describe what she was looking for.
The worker tried to comfort her. “It’s OK,” she said soothingly. Second mistake. It wasn’t OK. This woman used to be a teacher and it was not OK at all with her that she couldn’t find the words to say what she wanted.
Snow started again with Carla Bennett, a resident assistant with long experience in caring for the elderly. Bennett had to try multiple times before she could get past the habit of asking the woman what she needed. Finally, she did what Snow suggested. She repeated what the woman had said.
“You need something.” Then, “Tell me more about it.”
Snow’s character struggled some more, saying, “I need my white and my black that I have first.”
“Can you show me what you do with it?” Bennett asked. Finally, she steered the woman toward the coffee.
Bennett, who has been at Daylesford since it opened, said the program gave her a much clearer understanding of how Snow’s philosophy works. “It’s like she’s moving all the old furniture out of your mind,” she said.
Janet Haufler of Newtown Square went to the workshop to learn more about interacting with her 84-year-old mother, who moved into Daylesford Crossing after a bad experience at another facility. She said her mother was doing much better now.
“She became more engaged. She’s able to speak more. She’s able to move more,” she said. “She’s much happier.”
Reprinted with the permission of the Philadelphia Inquirer, January 31, 2016.