When Caregiving for Someone With Alzheimer's, Emotions Are All-Important
Last updated:August 18, 2009
Feelings outlast facts. That's the key kernel of wisdom behind a fresh approach to dementia care that can make the difference between frustration and contentment for people with Alzheimer's and other forms of cognitive impairment -- and between frustration and understanding for their caregivers.
All of us have an emotional "temperature" that changes minute by minute. People are said to get "hot and bothered," for example, or to be "coolly detached." I know you know how your own impatience rises when you're asked the same question for the thousandth time. Likewise, resentment can simmer when your plans are usurped by your family member's needs. (All perfectly natural, by the way.)
For someone with Alzheimer's disease, emotions outlive the ability of language, memory, and understanding to express them. Working within this truism -- keeping the person's emotional temperature constant -- results in daily life that's mellower and easier. In the United Kingdom, it's known as SPECAL (Specialized Early Care for Alzheimer's) care or as ["contented dementia,"] (http://www.timesonline.co.uk/tol/life_and_style/health/article6735083.ece) after a book of the same name that's just come out in paperback there. In the United States, this idea sounds like habilitation, the concept pioneered in 2004 by Caring.com dementia expert Joanne Koenig Coste in [Learning to Speak Alzheimer's] (http://www.amazon.com/Learning-Speak-Alzheimers-Groundbreaking-Approach/dp/0618485171/ref=sr_1_1?ie=UTF8&s=books&qid=1250527461&sr=1-1).
Some valuable ways to harness the power of emotion:
1. Understand that the person's behavior is largely fueled by their emotions.
Koenig Coste explains that what seems like a cognitive mixup (asking a spouse "who are you?" or wandering and getting lost) almost always has an underlying emotion, such as fear or apprehension, which drives the behavior. That's why you have to change the environment or your own expectations to set up an everyday world that is calm and reassuring. "It is care partners' unrealistic expectations that most often trigger frustration, verbal agitation, and physical aggression," she says. "Most behavioral changes in a person with progressive dementia are rooted in the frustration of being unable to master an emotional or physical environment that feels like foreign territory."
2. Keep your own emotions on as even a keel as you can.
Why does the person you look after sometimes seem to be in an inexplicably foul or jolly mood? Emotional reaction can outlast the memory of what made the person feel that way in the first place. Say you asked your mother to set the table but she forgot why she went to kitchen once she arrived there. When you ask her again, even a little impatiently, she explodes. What gives? She probably still feels mad at herself for forgetting (the emotion lingers even though she has no idea herself why she's mad or that she forgot). Conversely, a positive experience (a happy visit, an outing) might not be remembered a day later, but its positive emotional response can percolate on.
3. Join in the moment, rather than forever correcting the person.
Say you're in the doctor's office waiting room and the person keeps asking anxiously whether it's time for the plane to take off yet. It's likely he has long-term memory associated with travel. The wait and the chairs are triggering memories of an airport waiting area. Challenging his assumption and correcting him over and over may simply make him frustrated or even frightened. In contrast, by living within his wrong assumption, he's able to feel like himself, in control. Just say confidently, "Not yet." (And by the time the doctor is ready, he will probably shift to this new information and forget all about the "trip.")
4. Tap the power of touch.
Whether it's a sympathetic pat on your back or a nice 7-second "Alzheimer's hug" (long enough to be registered by someone with cognitive deficits), the body collects emotional info through touch, even if nobody speaks a single word.
Just be sincere about it. [New research] (http://www.nytimes.com/2009/08/11/science/11touch.html) shows that our bodies read emotions through touch with amazing specificity. A Depauw University psychologist asked blindfolded subjects to guess which of eight emotions a stranger was trying to convey simply through the use of touch: anger, fear, happiness, sadness, disgust, love, gratitude, or sympathy. The subjects understood correctly which emotion was being communicated between 50 to 78 percent of the time. (Pure chance would put the correct-guess rate at 11 percent.)
Obviously one's cultural background and age may play a role in how different kinds of touch are perceived. This study was done with college students. But the basic idea -- that we "read" emotion through touch -- holds up, even (perhaps especially) in people with cognitive deficits.
5. Open your heart to the idea that emotion is not only deep and primal, but transcendent. For both of you.
This anecdote, which I heard in yesterday's Sunday sermon, is a beautiful reminder that emotions have a language all their own. It seems my minister had gone to visit an old mentor, who had significant [aphasia following a stroke] (https://www.caring.com/articles/language-problems-after-stroke) and could only speak disjointed nonsense and random sounds. Still, the minister, who felt presence in the elder's eyes, proceeded to tell him all about his life. Before leaving, he asked his old mentor for a benediction.
The elder placed his hands on the younger minister, looked into his eyes, and proceeded to speak -- gibberish -- for five minutes. Any intended verbal message was lost.
Yet my minister says he was as stirred as he'd felt by any blessing he'd ever received. (And if you'd heard his broken voice relate this, you'd know he really meant it.) He understood -- as the former mentor also understood -- that the strong emotion behind the words remained heartfelt, strong, and true.
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