Being with someone with Alzheimer’s

*** Time for this post?  Reading…5 minutes. Viewing…11 minutes. Practising…until it becomes automatic.

A couple weeks ago, I wrote about being with a person who is dying. Mostly it was about what to say and not say. The same questions arise when visiting, or living with, a person who has dementia. What to say? What not to say?

I’ve known two people who developed dementia. In the old days, we had such good conversations! When that was no longer possible, I stopped visiting. I wish I’d thought of researching how to be with someone in that state, instead of abandoning them.

Engaging with dementia…

In the video below, improv artists Karen Stobbe and Mondy Carter share how they use the guidelines of improvisation to break through conventional caregiving techniques and open up new worlds for persons with dementia. Here’s their story from the TEDMED website.

Karen was working as an actress, writer instructor and theater improviser when her father was diagnosed with Alzheimer’s disease. Being with her father in the days leading to his death, Karen was struck by the surprising similarities between improvisational acting and caregiving for persons with dementia.

Combining both worlds, Karen created a workshop and training guide for dementia caregivers based on the rules of improvisation. Together with her husband, actor and improviser Mondy Carter, Karen wrote and performed the show “Sometimes You Gotta Laugh,” an educational and entertaining take on Alzheimer’s disease, caregiving, humor and stress.

She and Mondy live in North Carolina with their daughter Grace and Karen’s mom, Virginia, who also has Alzheimer’s disease.

Guidelines from Improv…

  • Say “Yes, and…”
  • Agree, don’t deny.
  • Accept offers and gifts.
  • Be specific.
  • Listen fully.
  • Accept the reality given to you, and step into their world.
  • Go with the flow.
  • Share focus; give and take.
  • Silence is powerful.
  • Commit 100%.
  • Be in the moment.

As they point out, this approach is not the solution for all situations that arise when you’re caring for someone with dementia. But in their experience, it goes a long way to help find connection, to have relationships, and for everyone to have a better quality of life.

The guidelines in action…

“Who is this music?” asked Virginia.

“The Beatles,” replied her teenage granddaughter Grace.

“Oh yes, I dated them,” Virginia said.

After a split second pause, “Oh, what was that like Grandma?”

This example leads off an article from Home Care Assistance that elaborates on the guidelines in case you’d like them in writing,

More about this approach…

  • Their longer presentation at the 2018 Eden Alternative International Conference. Starts at 29 minutes.

And what if it were you?

If this has got you thinking about what if you end up with dementia, here’s a link to the dementia directive form I introduced in a previous blog. Developed by Dr. Barak Gaster, this directive is worth considering as an addition to your basic directive.

Dementia presents a unique situation because it can take 5 to 20 years for the end of life to arrive. You might want to give thought to the kind of medical care you would want at various stages if you were to develop worsening dementia. For more about Dr. Gaster and why he thinks this is important, check out this article in the New York Times. In part, he says…

The standard advance directives tend to focus on things like a ‘permanent coma’ or a ‘persistent vegetative state,’” Dr. Gaster said. “Most of the time, they apply to a person with less than six months to live. Although it’s a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct their own care isn’t predictable or obvious.

I wonder…do you have any thoughts or experience to share ?

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