How to Have More Good Days With Dementia
Anyone caring for a loved one with dementia knows that there are good days and…less than good days. Actors Karen and Mondy Stobbe-Carter are teaching a way of connecting with loved ones using the skills of improv. Writer and activist Kyrié Carpenter spent some time with them and their family. Here’s what she learned.
“Who is this music?” Virginia asks.
“The Beatles,” says Grace, her teenage granddaughter.
“Oh yes, I dated them,” Virginia says.
“Oh,” says Grace. And then, after a split-second pause, “So, what was that like, Grandma?”
Steeped in the skills of improv, Grace’s natural teenage response to correct was overridden. Her grandmother’s claim of having dated not one, but all the Beatles could have been met with denial and an ensuing argument. Instead, space opened for a meaningful and connecting conversation.
“What happens so often,” explains improv and dementia guru Karen Stobbe-Carter, Virginia’s daughter, “is that we want to pull our loved ones living with dementia back into our world...and then the person ends up angry and confused.”
“I have to admit, at first my husband Mondy was much better at it than me,” Stobbe-Carter reveals, talking about the beginning of her journey. “There was this piece of me that wanted my mom — that wanted that identity of myself as a daughter and to have that relationship.”
Can the Rules of Improv Lead to Better Dementia Care?
For the past 20 years, Stobbe-Carter and her husband Mondy Carter, have been using improv to create more effective communication in dementia. Actors by trade, they have 20 years experience as family care-partners and elder care culture changers. They found the improv approach creates more happy, connected moments. It is not a cure or a fix all, but instead is a way to help you have more good days.
Here are their 10 guidelines stemming from improv that lead to successful dementia care:
Agree, don’t deny.
“No” is a stop sign. “It is great to hear ‘yes,’” explains Stobbe-Carter “even if you are not saying the word ‘no,’ we say no all of the time. ‘Oh, your seat is over there,’ for example. People living with dementia get verbal, mental and physical nos all the time. ‘Yes’ feels good to hear. ‘Yes,’ says ‘I understand, I hear you, I am listening to you.’” Start with a yes and see where that takes you. If someone says they dated the Beatles, you accept that as their reality and conduct the conversation accordingly.
‘And’ builds on the ‘yes’ and keeps the flow going. When Stobbe-Carter’s daughter didn’t reject the idea that her grandma dated The Beatles, she was saying yes. The ‘and’ in this example was the follow-up question “What was that like?” Building on what is offered keeps the flow going and opens the doors for connection.
Details give you somewhere to go during an improv skit. For persons living with dementia, it can help to have something to connect with. Dementia can make abstract thinking more challenging. Deciding if an abstract ‘lunch’ sounds appealing is harder than sensing into if a ‘warm gooey grilled cheese we can dip in tomato soup’ sounds good. Be specific and concrete.
No “yeah, yeah, yeah” allowed. Communication when living with dementia means shifting our perspective. Messages may come across more metaphorically. By listening fully, we can hear all of what is being communicated. Pay attention to tone, word choice, tempo, and body language. All of these are important whether you’re on the stage or in your living room.
Accept the reality given to you.
A classic requirement when acting or watching a performance is to “suspend your disbelief.” Anything goes in improv. Step into your loved one’s world. This is crucial. Correcting someone’s reality is a surefire way to end up in an argument. Did Grandma date The Beatles? Denying this would have stopped the conversation. Accepting it opens the space for curiosity and dialogue. You do not need to lie or fib to honor a reality different than your own. In my work with people living with dementia, I have met many who are ‘authenticity meters’ and can sense a lie or manipulation a mile away. It is the difference between, “Oh, what was that like to date The Beatles?” and, “I know, they send you letters all the time and are coming over for dinner tomorrow.” While the latter would be okay on the improv stage, it can be very harmful to trust in a relationship. “The lie is another band-aid we use,” says Stobbe-Carter. Instead, we should ask things like, “why does this person want to go home? Are they not feeling complete here? Are they not feeling supported? Are they scared? What is the reason behind it?”
Go with the flow.
Accept that you never know what is coming next. Follow the co-created path that winds forward from ‘yes, and.’ There are many great resources on flow state and presence that can help you cultivate this skill. Whatever your loved one says, be part of the conversation and the solution. Don’t raise more obstacles. If you do ask a question, make sure it is open-ended with no preconceived correct answer.
Give and take. Share bits of your reality while being curious about theirs. Try not to talk at someone living with dementia. Give them the space to share at their own pace. Balance this with sharing and giving of your reality too. Sharing experiences is a basic improv fundamental.
Silence can be powerful.
Sit in the silence. Breathe and be together. Moments of silence can hold communication and connection. Silences also create space for thinking to take place. Often people living with dementia are outpaced in conversation. Sitting in the silence allows quieter voices and thoughts to be heard. In improv, silence can be used to create moments of laughter or suspense, among others. Try using silence to bring a sense of calm and peace to your communication.
When on the stage, your sole focus is the story you’re in. It takes more effort to bring partial attention to something than to dive in fully. Think about entering a cold lake one step at a time versus cannonballing in. Committing 100% isn’t asking you to give more. By committing fully, you are not pulled in two directions. Paradoxically, this makes things easier. If you are going to sit and be with someone, sit and be with them. Even if it is only for a moment. Don’t look at your phone or the TV. Be with them 100%. This is a gift. Being with someone living with dementia can give us a moment free of multi-tasking.
Be in the Moment.
Be here now. Identifying things around you as they happen is a common improv exercise. If you are unsure of what to say or how to start connecting, name something happening right now. Try not to focus on the past or the future. What is happening in the now, in the two realities joining at this moment?
Start with these guidelines that are rooted in improv. Use them as training wheels until this becomes a way of being. This is non-prescriptive -- there is no one right thing to do in this situation or that. Practice each of these and see how your interactions change with people living with dementia and beyond.
Improv For All Partners-in-Care
Person-directed care is not just about the person living with dementia. We need to honor the needs and realities of all the partners in care. When it becomes only about the person living with dementia, resentment can breed, and we get stuck in a loop of caregiver and receiver when we need to be in care partnerships.
“This whole approach takes the stress off,” Stobbe-Carter explains. “You aren’t arguing, you aren’t pushing someone to remember this or that, you are just being present with them. It’s a really easy thing to grasp once you start doing it full time.”
Practice improv now, with everyone, and experience the benefits.
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