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.


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

The dementia tsunami is headed your way

A Guest Post by Amy Goyer

Anyone who has ever encountered someone who has dementia, much less been involved in the intense care for or a loved one with the wretched disease, has three thoughts that permeate his or her mind:

  • First, pleading: “Please, please don’t let it happen to me…and if it does let there be a cure.“
  • Second, reality: “Who will care for me if I do develop dementia?”
  • Third, fear: “How am I going to amass enough money to pay for my care?”

I was first a caregiver for my grandmother who had dementia and now for my Dad, who lives with Alzheimer’s disease, a common form of dementia. I have these thoughts on a daily basis, and I know I’m not alone: 25 million people are projected to develop dementia by the year 2050 unless we find ways to prevent, treat and cure it.

Who will care for these people? What will be the personal, medical and economic impacts of this surge?

Recently, I participated in a TEDMED Google+ hangout chat about the dementia tsunami headed our way. I was encouraged by the robust discussion of these and other key questions by experts, doctors, researchers, service providers and caregivers. Not because there were answers to all of these questions, but simply because the discussion was taking place.

Those of us who work in the field of aging have been riding our virtual horses through the night shouting, “The boomers are coming! The boomers are coming – and they’re bringing dementia!” for many years. Some in the medical community have also been sounding the alarm. In fact, it’s not only the boomers. By 2050, Gen Xers and even Generation Y will be in dementia range.

Now, by shining a light in the darkness on this critical issue, TEDMED is helping to create the only thing that will really change the course of the dementia tsunami: public demand. We must, as a society, reach that “I’m mad as hell and I’m not putting up with it anymore” stage that creates an overwhelming energetic shift. That shift is what it takes to increase research and treatment options for dementia, as well as affordable care for those who have it and support for those of us who take care of them.

Experts in the Google+ hangout shared their perspectives and some key issues in the chat:

  • About 1 in 8 older Americans have Alzheimer’s disease now (one form of dementia).
  • At this time, some medications and treatments can slow certain types of dementia for some people, but nothing stops it. Nothing. There is no cure.
  • The National Institutes of Health spends only about $500 million a year on dementia research – much less than other diseases.
  • Less than 1% of nurses, physicians assistants and pharmacists are trained in geriatrics, yet 26% of their patients are geriatric. There is a dearth of geriatrician physicians (geriatricians) as well. There are simply not enough medical professionals who are trained in dealing with the diseases of old age (including dementia) and the necessary unique treatments and approaches for this population to meet the demand.
  • Family caregivers are bearing the bulk of the burden of care and will do so increasingly in the future – many without connections to resources and supports that are in place. Caregivers for those with dementia have higher rates of depression and other health problems themselves. More funding for training and supporting family caregivers is needed.
  • More people need to participate in dementia research – but caregivers of those who suffer from it are generally so exhausted and overwhelmed we often can’t get it together to register our loved ones or ourselves to participate in research.
Amy Goyer with her parents.

From my perspective as a primary caregiver for both of my parents who live with me, a full-time worker, and an individual who probably has a strong likelihood of developing dementia myself some day, I could feel horrifically hopeless. What keeps me from falling into the abyss of fear? Taking action. I choose to do something about all of this; I do my part in creating that necessary energetic shift.

I do so personally, by making the necessary sacrifices in my life so that I can ensure my parents are getting the best possible care and by taking a relentless approach to doing my homework, asking questions of their health care professionals, leaving no stone unturned when it comes to possible treatment for dementia and their other illnesses. I also honestly share my own personal caregiving experiences in my blog and other forums. Professionally, I take action by raising awareness and helping other caregivers – in particular through my work with AARP and the Ad Council as a spokesperson for their caregiving campaign. We are working hard to connect caregivers with much needed supports through the AARP Caregiving Resource Center. It’s a big job and it will only get bigger.

Whether you are a doctor, researcher, lawyer, nurse, family caregiver or an individual who doesn’t want to get dementia – do something. Keep the discussion going. It’s better than sitting back and waiting for the flood. In the TEDMED chat, expert leaders and participants all agreed on one thing: we must advocate for those with dementia – they can’t advocate for themselves. I might add that, truth be told, when we advocate for prevention, treatment and a cure for dementia, we are actually advocating for ourselves too. The tsunami is coming, and you never know if you will be in its path.

I look forward to more pointed and hopeful discussion about caregiving and dementia at the TEDMED event in Washington, DC coming up April 16-19.

Follow Amy @amygoyer and on Facebook.



Examined Lives: A younger face of dementia

My mother was diagnosed with frontal lobe dementia at the age of 63. Cause: unknown. The symptoms crept up over years, in retrospect, but really got our attention following surgery to repair a broken wrist. Mom became moody and withdrawn. She had trouble speaking in complete sentences. She baked a cake and forgot the sugar. When driving, she felt compelled to pass whomever was in front of her — a white-knuckle experience for her passengers, particularly on a highway.

Photo: Gordon Donovan

Later, though, she had more falls and began to walk with slow, birdlike steps, suggesting another fiendish disease at work. She was undiagnosed for quite a while, until her thoughtful gerontologist looked between the lines and found she had progressive supranuclear palsy (PSP), a neurodegenerative disease. Eventually, she would become completely rigid, and, at the end, lose her ability to swallow. Her dementia was one of the symptoms that particularly unlucky PSP patients face.

It didn’t manifest in forgetfulness.  Rather, it was a series of behaviors that were off kilter at best and painfully embarrassing – and dangerous – at worst. Like wandering off holding my three-year-old at Disneyworld, swallowed by the enormous crowd as I frantically tried to follow.  Eating off of a stranger’s plate at a nearby table while waiting for her dinner at the local tavern.  Opening the passenger door on a highway.

Mom’s dementia was an especially startling, as she had previously been so capable in so many fundamental ways. She was a wizard with numbers and a top-performing saleswoman. She could wallpaper a room flawlessly.  She sewed elaborate prom dresses, and stuffed animals and quilts that she donated to children’s hospitals. She grew and canned her own vegetables and baked, decorated and transported an elegant, three-tiered wedding cake for my cousin’s wedding. On her first trip outside the U.S., she made her way alone around Paris, not knowing the language, including a long Metro trip to return a train ticket.  She got the refund. Then she drove us to Belgium – in a stick shift, of course.

Mom in 2009, one month before her diagnosis.

Because she looked even younger than her age, and was otherwise healthy and fit, save for the blankness in her brown eyes, people she encountered were often taken aback by her behavior. But I was humbled by the kindness and humanity we encountered, especially once when Mom reached over and grabbed a pair of socks from a woman’s hands at a clothing store.  The woman leaned over to me and whispered, “My dad was like that.  I know. God bless you.”

She was able to express humor and love the longest.  One day, two gents at the nursing home had a little shouting match, all up in each other’s faces – typical guy stuff, even though one was strapped to an oxygen tank and the other wobbled precariously behind a walker. Everyone in common area could hear their salvos:

“You talkin’ to me?”

“Yeah, you.  I don’t like the way you look.”

“Well, I’m sick of your shit, too.”

“Get up!  I’ll show you what for!”

I turned to see Mom soundlessly giggling.  Our eyes met.  Recognition.

And whenever I told her I loved her, her response came back, clear as a bell: “I love you, too, sweetheart.”

There was a lot that worked for us in the healthcare system.  I was lucky to be able to take her to the one of the world’s top PSP specialists, Lawrence Golbe, who carefully examined Mom and gently confirmed the diagnosis.  But much of our help came from outside the system. My parents had life insurance that kicked in when mom entered hospice and helped defray the enormous costs of nursing home care, which long-term care ombudsmen helped us find.  Lawyers helped us have the necessary paperwork in place, which in turn spurred necessary talks about hard decisions; a friend who is a neurologist had given me frank advice as to what was in store for Mom. The CurePSP Foundation publishes information about the disease and organizes online discussions and local support groups.  Knowledgeable and caring hospice nurses – brought in by our private nursing home – provided continuity and were our mainstay during those final weeks.

Dementia robs its victims of their chance to share their stories. But early on, I asked my mother for permission to tell hers, and she agreed. Like most patients I’ve interviewed, she wanted to help others, especially those who might follow in her unsteady footsteps.

By Stacy Lu

Join TEDMED’s online live discussion with experts on the Great Challenge of our epidemic of dementia this Thursday at 1pm ET.