Improving the script for caregiving

K&M PhotoboothIn this conversation between two improv actors, Mondy Carter steps into Karen Stobbe’s world and asks for her perspectives on what she thinks living with Alzheimer’s disease is like, and how we can harness the rules of improv to improve our caregiving.  Learn more about Karen and Mondy and watch their TEDMED 2015 talk here.

Mondy: Why do you think being in the moment with someone living with Alzheimer’s is important? I know what I think, but I am interested in how you see it.

Karen: People living with Alzheimer’s are experiencing short term memory loss. When you’re struggling to remember and trying to make sense of the world around you, life becomes very immediate – very  much in the now.  If we stay in the moment with them, it slows us down and brings us more into their world so we can see things from their perspective.

Mondy: That’s how I see your Mom’s experience with Alzheimer’s. You and I walk around with the context of our recent memories, and so the world makes sense to us. But her recent experiences don’t stay with her at all, and that void of information is filled with immediate sensations colored with the only memories that she does have – ones from long ago. Even though we can share the present, I have to be open to her particular present to be in the moment with her.

Karen: Exactly. When you are truly in the moment, you make yourself available to be present for any moment that arrives.

One of the hardest guidelines to follow in improv and Alzheimer’s is listening fully. To really understand a person with Alzheimer’s, I think you have to pretend the other person is the only one in the world as you listen to them. Like I do with you….

Mondy: You do? I must have missed that.

Karen: Perhaps if you listened more fully?

Mondy: Hmmm…sorry, I just got a text!

Karen: Ha. Seriously, though, think about how courageous it is to even try to communicate when you’re struggling to remember, fighting to follow a conversation, or piecing together fragments of memories to make sense of the world. If they are trying that hard, maybe we can try to be more present in our listening. There was actually a study done in nursing homes that showed 92% of the talking was done by those who work there, and only 8% by those who live there. Not a lot of conversations with the residents or listening by the staff is taking place.

Mondy: When I began improv, it was really difficult for me to stop working out my responses while the other players were talking. It’s hard to believe that just letting go of our own ideas allows us to come up with the best ideas. But, when you listen fully and have the other person foremost in your mind, the human brain is perfectly able to come up with what is needed immediately. Wouldn’t you say that listening is the bedrock of improvisation?

Karen: Yes. And isn’t listening something you have to actively practice?

Mondy: I had to, again and again. The “good” thing about doing improv on stage is that, when you don’t follow the guidelines, you fall on your face. There is a tremendous ego incentive to let go of your ego. If you don’t let go and listen, you crash and burn.

Karen: Which is basically what can happen in a caregiving situation.  If you don’t let go and listen, you won’t understand what the person with Alzheimer’s is trying to say. Misinterpreting their intentions or projecting our ideas can lead to frustration on both sides.

Mondy: Is that why so many people think aggression and anger are always a part of Alzheimer’s?

Karen: That’s a common misperception. People think everyone with Alzheimer’s gets to an “aggressive stage” or all “get angry.” That is not true. Most of those so-called behaviors are either their way of trying to communicate, or reactions to our poor behavior. Most of the time, their actions are really very normal for their perceived situation. We just don’t see it that way.

Mondy: Can you give me an example of that situation?

Karen: Imagine that it’s 6:00am and you’re comfortably lying in bed, in your home when… boom! A complete stranger walks in, opens your drapes and says, “Mr. Carter it’s time to get up!” How would you react?

Mondy: I would freak out and throw something at them. Do I have a taser in this hypothetical case?

Karen: Sure, there is a taser…

Mondy: Then I would tase them.

Karen: We do that to people living with Alzheimer’s all the time.

Mondy: We tase them?!

Karen: Ha! Stop it. No, we don’t bother asking them if they even have any desire to get up. We forget to re-introduce ourselves if we’ve been out of the room for a bit. We tell them they are in their room, but then we burst right in and order them around. In that situation, just about anyone would get upset or angry.

Mondy: I see. So that’s why stepping into their world, instead of forcing them to live in ours, is so important.

Karen: Yes – there’s so much we could learn from the basic rules of improv. Stepping into their world, being in the moment, and listening fully – these rules are the foundation of compassionate care for people living with Alzheimer’s.

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A live online event: Unraveling dementia

Today, one in three seniors dies with Alzheimer’s or another related dementia, and by 2050 we may see some 13.8 million patients with Alzheimer’s as our population ages.*

Join a live online discussion, “Unraveling Dementia,” this Thursday at 2 pm EDT.
Join a live online discussion, “Unraveling Dementia,” this Thursday at 2 pm EDT.

The clock is ticking.  Can we possibly avoid a catastrophic dementia tsunami? What have we learned about dementia-causing diseases to date?  And what are our best prospects yet for prevention, better diagnoses and a cure?

Research focal points of late include:

  • Working toward a better understanding and a neural map of the brain, including projects like the BRAIN Initiative, described at TEDMED 2013 by Dr. Rafael Yuste.
  • Genetic risk profiling.  If we can identify those at greatest risk for dementia earlier, can we develop drugs that can prevent it?
  • Discovering and testing drugs that may prevent the onset of Alzheimer’s.  Current testing takes aim at beta amyloid, a protein associated with the plaque that forms in the brain in Alzheimer’s patients.
  • Evaluating evidence that supplements and lifestyle interventions may reduce dementia risk.  Can fish oil prevent cognitive aging?  What about caffeine?  How about herbs and antioxidants?  Exercise?  A good sleep?  Current science seeks to separate sound, healthy interventions from myths.

Join TEDMED and invited guests this Thursday at 2pm ET to discuss these issues and others related to dementia and Alzheimer’s. Tweet your questions to #GreatChallenges, and we’ll answer as many as we can on air. Just click here to sign up and get started.

Guy Eakin, Vice President of Scientific Affairs at the American Health Assistance Foundation and a TEDMED Great Challenges team member, talks about advances in basic research related to dementia.

 

*Source: Alzheimer’s Association

Can we head off the dementia tsunami?

By 2050 there will be some 25 million Alzheimer’s patients, adding to the burden of care of our aging population, and bringing a colossal personal, medical and economic impact.

Jeffrey Cummings of the Cleveland Clinic Lou Ruvo Center for Brain Health, Richard Payne of the Duke Divinity School, and Gregory Petsko of Brandeis University sat down with Lisa Witter of Fenton to talk over the issue, one of TEDMED’s Great Challenges in health and medicine. Where is the science on Alzheimer’s?  Are there ways to prevent it?  And how can we better prepare caregivers?

What do you think we should be doing now to prep for what Cummings calls  “the unacceptable future?”  Share your thoughts on the interactive Great Challenges web site.

Reisa Sperling: How soon can we predict Alzheimer’s?

Can advances in brain scans and other testing techniques help us predict who will come down with Alzheimer’s — decades before symptoms show?  Reisa Sperling of Brigham and Women’s Hospital reports on the latest research in battling a disease whose symptoms show up far too late to cure.

Sperling’s work in the Dominantly Inherited Alzheimer’s Network (DIAN) study was published July 11th in the New England Journal of Medicine. In this work, a team of researchers offered a timeline of the disease progression, with biomarkers, including changes in brain size and spinal fluid, evident as early as 25 years before the onset of symptoms. Read more about it here.