We are happy to re-post this very special blog from August of 2014.
by Karen Keller Capuciati
I’m at the Alzheimer’s Association’s Annual Education Conference, held a few months ago in Cromwell, Connecticut. Jolene Brackey, the keynote speaker, is what you might call an Alzheimer’s visionary. After graduating from Iowa State University, Jolene began working as an interior designer but soon came to realize that she was more interested working with the people at the Alzheimer’s special care unit across the street from her design firm. She enjoyed the interaction with older people and began formulating her own unique ideas for helping people with dementia live in the moment.
She walks out into the audience and chooses a gentleman entirely at random. She asks him for his wallet and keys.
As the man dutifully hands over the items, Jolene declares, “I’m just going to place them up there behind my podium for a few hours. Okay? So that you don’t lose them.”
The man seems a bit confused but willing to play along.
Jolene then takes it a step further: “Now imagine that you have no memory that I’ve taken your keys and wallet. When you check your pockets later and find them missing, do you think you’ll be able to just sit here calmly and listen to me gab?”
“No,” the man asserts. “I would have to get up and look for them.”
Jolene chuckles. “Well, then you’re obviously an elopement risk,” she says, employing the medical definition of “elope” — to wander off without permission. “We clearly need to medicate you!”
This is one of Jolene’s primary concerns regarding dementia in general and Alzheimer’s in specific — that caregivers choose to medicate patients when their behavior in the moment is attempting to communicate something specific, something that may be resolvable, something that doesn’t require the quick fix of a sedative.
The just-completed demonstration is a perfect example. If you have spent your entire adult life carrying a wallet and keys, and they are taken away from you as either unnecessary or perhaps too risky, their absence is likely to generate a sense of being off-kilter, a feeling of loss, of insecurity, as with the gentleman in the audience. Yet, as a healthy man with all his mental faculties, that gentleman is able to understand the feeling and even verbalize it. He can look for his wallet and keys, he can ask his wife and kids or his coworkers if they have seen these items, and sooner or later, he is likely to find them and resolve the problem. Consider in your own life the times when your wallet or keys or cell phone have suddenly gone missing — there is that urgent discomfort, an overwhelming need to set things right, to find the items and restore your normal state of balance.
Now imagine having that discomfort without any sense of what’s causing it or how to relieve it.
Clearly, a person with dementia cannot express the discomfort in the same manner, but they may indeed express it — and it’s our role as caregivers to try to make sense of what’s wrong. When I spoke with Jolene after the conference, she related another such anecdote. There was an older gentleman named Joe, living in a skilled nursing facility, who was in the late stages of Alzheimer’s. He kept walking up and down the halls, incessantly tapping the right breast pocket of his shirt. Something was clearly amiss, but the caretakers on duty did not decipher Joe’s message.
Normal protocol is to manage Joe with medication. But what Joe really wanted was a handkerchief in his pocket.
For men of Joe’s era, there were five items that offered daily security: wallet, keys, money, handkerchief and pocketknife. These objects were likely found on Joe’s person for nearly his entire lifetime, at least until his admission to a nursing facility wherein the items allegedly became superfluous. And while Joe may no longer be able to realize what he is looking for when he taps his pockets, there is a certain cell memory created by a lifetime of having derived security from these items. Now, however, their absence was causing a reaction in Joe, a reaction that caretakers pin on the AD rather than trying to intuit a specific motivation. The facility personnel simply label the behavior as agitation and treat it with medication.
When Jolene later noticed how Joe kept picking up napkins in the dining room, she realized that Joe was missing his handkerchief. “Since we are a Kleenex generation,” Jolene explained, “we don’t even realize we are taking something away from him. It’s not in our context.”
But a hankie tucked in his pocket gave Joe his security back. “And if it’s a hankie that helps, how much does it cost to buy 100 hankies for Joe?”
In the end, as Jolene notes, “When they feel secure, our day gets much easier.”
Jolene has an enlightened perspective on how to achieve positive emotional outcomes for those with dementia. She was so successful in her approach when working at an Alzheimer’s special care unit that she went on to write several books and go on a public-speaking tour. To get more great nuggets from Jolene, I urge you to buy her book, Creating Moments of Joy for the Person with Alzheimer’s or Dementia: A Journal for Caregivers. It’s a quick read, filled with practical ideas that will stick with you.
Karen Keller Capuciati is the Co-Founder of In Care of Dad.