Live Well with Dementia

“This is one of my favorite songs. What do you think of it, Fran?” We were sitting in Mom’s room in the memory care community, listening to a recording of The Very Thought of You.  Even though my mother could no longer answer this question, I liked hearing my father ask it.  He honored Mom as his long-time beloved conversational partner.  Through this simple action, he was helping her live well with dementia. His example helped me do the same.

This article by Karen Love, Executive Director of Dementia Action Alliance, reminded me of my dad’s positive outlook. It inspired and touched me and I wanted to share it with you.

By Karen Love, DAA Executive Director

In 1968, Robert Rosenthal and Lenore Jacobson published groundbreaking research that showed teacher expectations of students became self-fulfilling prophecies. At the beginning of a school year, first and second grade students’ IQs were tested. The researchers randomly selected a group of students regardless of their actual test results and led the teachers to believe that this group was capable of great academic achievement. The teachers, perhaps unwittingly, gave the students with the presumed higher IQs more positive reinforcements.

At the end of the year, the students were retested. The group labeled high academic achievers did, in fact, show higher achievement than the other students. Robert Rosenthal summarized this research finding as – “What one person expects of another can come to serve as a self-fulfilling prophecy.” This outcome, retested and proven by many others over the years, has become widely known as the Pygmalion Effect.

The dynamics of the Pygmalion Effect have significant impact for those who want to live well with dementia. There is abundant anecdotal evidence among person-centered dementia care experts that the Pygmalion Effect similarly applies.  Family, friends, and others may have low expectations regarding what people living with dementia can and cannot do and how they can function and live. While they may not even be consciously aware of this view, these lowered expectations affect every aspect of the relationship. They don’t engage, interact, and provide opportunities for interesting and fun activities at the same level they would if their expectations were higher.

I experienced the Pygmalion Effect this past week at a memory care assisted living community. I saw a resident sitting alone, apart from the others. I asked a staff member about her and was told she had very advanced dementia.

“What does she like to do?” I asked.

“Nothing, she can’t do anything.”

I knelt beside her and offered a small pillow covered in a soothing, tactile fabric. She immediately started stroking the pillow and then explored the seams. Her expression turned sweet and serene.  Touching the fabric was comforting to her. As I was getting ready to leave, the woman’s daughter arrived. I introduced myself and described how much her mother enjoyed the tactile pillow.

“Mom was a seamstress and loves the feel of fabric,” her daughter said, smiling at her mother. “I should bring one of the lap quilts she made when I visit.”

Her daughter was reminded of something her mother liked to do and she felt grateful she could bring something that would please her mom.

I was reminded how important it is to have interesting and engaging items when we visit. Examples include scented lotion, a tactile pillow or fabric scraps, and an enjoyable short story to read aloud.

Helping someone live well with dementia invites us to open our eyes, our hearts, and change our mindset.  Instead of perceiving limitations, we can spark the Pygmalion Effect by setting positive expectations. We can help make living well with dementia a self-fulfilling prophecy.

Karen Love, gerontologist – Executive Director, Dementia Action Alliance – Powered by People with Purpose 

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

Adapting to Dementia: Laurie Scherrer’s Inspiring Story

“I’m having a slow day,” Laurie Scherrer says, when I call her Pennsylvania home for our scheduled conversation on adapting to dementia. “So bear with me.”

It was easy to bear with Laurie, as she is bright, positive, articulate, insightful, and authentic.

I met her during a telephone interview for the esteemed podcast, Alzheimer’s Speaks, which she co-hosted along with founder Lori La Bey. I was so impressed with both of the women’s insights and interviewing abilities, and I wanted to learn more about how Laurie managed her life with early onset dementia.  Here are some highlights from our conversation.

From Sales Leader to Closet Cleaner

How do you go from excelling in a distinguished business career as a top manager and sales leader to becoming an unemployed 55-year-old woman who can no longer do a simple math problem or weed her prized garden?

That’s what happened when Laurie Scherrer was diagnosed with early onset dementia in 2013.  After days of languishing at home, cleaning out closets, and feeling like a complete nobody, she realized she needed to take action. And being a woman filled with determination and creativity, she did just that, with her husband offering his unwavering support.

“I have a passion for excellence and the recognition that comes with it,” Laurie says. “Being Number One in sales drove me.”

Since she had nothing to push towards, she turned toward writing blogs and to her former passion for sewing, so she’d once again feel accomplished. Plus, Laurie wanted something tangible to give to her family members, something that said, “I love you.”

Forgetting the Curves and Going Straight

In her earlier days, before her career consumed much of her time, Laurie was an accomplished seamstress, reveling in creating costumes for church programs. She had loved sewing quilts and clothes and decided she’d return to her former hobby.

She sat down with yards of fabric, ready to cut quilting squares. But hard as she tried, she could not figure out how to cut the fabric. She was slumped over her sewing machine, weeping, when her neighbor dropped by.

“I can’t do this anymore,” Laurie said.

“I’ll help you,” her neighbor said.

She brought over a cutting board with lines in it and talked Laurie through the process of cutting the cloth.

“Once she helped me lay it out, I could do it again,” Laurie says.  

Laurie has since created blankets, pillowcases, burping cloths, and more for her family.

“The straight lines are working for me,” she says.

Noticing the Blessings

Laurie is making the most of her life. She treasures her glorious back yard and her deepened relationship with nature.

“Before, I was so busy, I never saw all the beauty around me,” she says.

She also treasures her worldwide friendships with people living with dementia, which she nourishes through video chatting and posting on Facebook. She and some chat friends recently started a virtual spiritual dementia café, where they read, discuss scripture and pray with and for people from all over the world.

Most of all she loves knowing she is giving back and helping others through her writing, speaking, radio hosting, and advocacy.

Teaming Up to Produce Great Results

Laurie and her husband work together to help her live a vibrant life. Here are their tips:

• Have a designated place and time to escape to, with no phones or email, so you can talk, cry, and really express yourself.

• Talk through the tough times. Notice when someone has a difficult day and figure out how you can improve things.

• Work together to adapt beloved activities.  

• Laugh as much as possible.

• Be thankful for every good moment.

I know you’re going to want to know more about this remarkable woman and her tips for adapting to dementia.  Visit https://dementiadaze.com/about-me/

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

The Power of the Playlist

Ron and I were already champions of Dan Cohen’s world-changing Music & Memory program, which is featured in Connecting in the Land of Dementia, but we had never met Dan in person. The moment we learned we were going to New York City, we reached out to Dan and he agreed to meet with us.

Dan is a prime example of one collaborative person making a difference for thousands. Eighteen states have already funded Music & Memory rollouts as a best practice approach for care facilities to improve quality of life for persons with dementia. In Toronto, everyone who is diagnosed with dementia receives a free iPod so they can enjoy personalized music. Dan and his team have trained 5000 dementia care managers, who understand how effective this program is. He is currently collaborating with hospitals, hospice, and prisons, as well as long term care communities.

Here is some of the wisdom he shared with us.

“We all need to create our personal play lists now,” Dan says. “Music makes any healthcare encounter better.  Whether you’re waiting in the doctor’s office, going into the hospital, attending rehab, or moving into a care community, you’ll have a more comfortable experience when you are able to listen to favorite songs.”

Click here to listen to Dan Cohen.

Click here to learn more about the Music and Memory program.

Read more about Dan’s programs in Connecting in the Land of Dementia: Creative Activities to Explore Together.  Order your copy from your favorite independent or online bookstore.

 

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At Long Last: A Page-Turning Love Story

My hands trembled as I reached out my arms. For three long years I’d been working toward this meeting and yearning for this moment. Now, it was finally here. She was more beautiful than I had imagined, with a pleasing weight, just right for holding, just right for spending long hours with. From a glance, her personality seemed strong and purposeful and yet her warm, colorful exterior told me she would be easy to read.  As she gradually opened up to me, I felt her power, her accessibility, her willingness to share ideas and wisdom. She felt great; she looked great; and she was brimming with exciting new ideas. Three long years and finally, she was in my arms. I hugged her tightly. At last I was holding my new book, Connecting in the Land of Dementia: Creative Activities to Explore Together

What makes this book unique? It’s the amazing people who contributed to it. During the writing process, I interviewed dozens of innovators across the globe, gathering ideas that engage the creative spirit so you can continue to experience meaningful moments throughout the dementia journey. These luminaries inspired me every step of the way and I am eager to share their ideas with you.

This book is brimming with easy projects using music, art, movies, cooking, gardening, and more. Here are some of the benefits you can look forward to when you do these activities together: Increased energy and socialization, an improved sense of purpose, reduced anxiety, and chances to express yourselves in new and meaningful ways.

Here’s even more good news about the ideas in this book. They’re adaptable for all ages and abilities, and you don’t need to have any special talents. Simply incorporate them into your daily routine and you’ll enrich your time together.

Marc Wortmann, Executive Director, Alzheimer’s Disease International, called the book “A ‘must read’ for every care partner because it really helps you to look at things differently!”

If you’re in the Kansas City area, please join us for the book launch on Sunday afternoon, October 9th, at 1:30 for a reception in the Truman Forum at the Plaza Library. The free presentation will begin at 2:00  This lively program, filled with ideas, stories, and songs,  features myself and my partner Ron Zoglin, musical luminaries Rod Fleeman and Cynthia Schroer, and guest speaker Michelle Niedens from the Heart of America Chapter, Alzheimer’s Association.

RSVP 816-701-3407 

For those of you in the Washington DC area, please join us at the free Alzheimer’s Foundation of America Caregiver’s Conference on Thursday September 29. We’ll be presenting there, along with other experts in the field. Click here to register.

We recently heard from several readers, saying, “This book is going to help so many people. I’m recommending it to my friends and colleagues.”

That’s what this is all about: enriching people’s lives through meaningful engagement.

It’s a challenge, bringing a new book into the world and we welcome your ideas and help in spreading the word about the book and the event.

You can order a copy now from Rainy Day Books, our book-seller for the event, or online.

Here is some advanced praise:

“A thoughtful and positive guide to the very thing I find myself constantly advocating to doctors, caregivers, and family members—social stimulation and creative arts will limit the need for psychiatric medication and improve the quality of life for those with dementia more than anything else.”   Doug Wornell, MD, Life Solutions Group for Geriatric and Neurological Psychiatry

“Buy this book, read it, highlight what inspires you. As you make notes and bend pages to personalize this guide, you are creating a family treasure.” Carol Bradley Burdock, Founder of Minding Our Elders

“Deborah Shouse provides a great public service by shining light on the numerous creative activities that can meaningfully engage the minds and spirits of persons living with dementia. From personalized music to storytelling, Shouse makes it easy for caregivers to understand the various options they have to help their loved ones navigate through their everyday lives.”  Dan Cohen, MSW  Founding Executive Director, MUSIC & MEMORYsm

 

Tips from a Parisian Artist

There’s something magical about visiting an artist in his studio. Especially if that studio is in Paris.  We were honored to meet Patrick Laurin, artist and art therapist, on a recent trip to France.

In the beginning, Patrick Laurin’s work with people who were living with dementia went slowly. When he first visited the care home and invited people to join him for painting, he heard various reasons the idea wouldn’t work.                                                                                                                                     “I can’t hear you.”  “I can’t see you.”  “I can’t move my arm.”

Patrick, who had quit working as researcher in the pharmaceutical industry so he could create deeper connections with clients, understood the importance of building relationships. Gradually, he got to know the people who lived in the community. He wanted to tailor an artistic experience specific to each person’s abilities and needs.

Over time, the people who couldn’t see, hear, or move were all happily involved in painting.

One woman seemed to blossom when holding the brush and stroking on the paint. Even though she couldn’t later remember to say, “I’ve been painting,” she enjoyed the experience.

One day, Patrick was on another floor in the care community when he encountered this woman and her daughter.

Her daughter said to Patrick,” You are the painter.”

Patrick was thrilled her mother had been able to mention the art therapy sessions. But before he could respond, the mother said, “No, the painter is me.”

“Inside, she was seeing herself as an artist,” Patrick says. “The painting strengthened her identity.”

Patrick has learned to approach each person with flexibility. Sometimes Patrick jump starts his artists with a squiggle of color on the page. Then he steps back to let them respond with their own squiggle. If they’re stymied, he offers a choice of two colors.

He also uses collage techniques to inspire his artists. He selects three separate pictures, each with one recognizable thing, such as a house, tree, or dog. He shows the photos to the artist, and asks, “Which one of these attracts you?” When the artist chooses a photo, Patrick then asks, “Where would you like to put this on the paper?”  He and the artist apply paste to the paper.

“We don’t turn over the picture and apply paste, because the image then disappears and that can be confusing,” he says.

When the picture is glued to the paper, Patrick discusses a color that’s already in the picture.

“You could take the blue in the sky and extend it,” he might suggest.  This suggestion often inspires the artists to start painting.  If they get stuck, Patrick says,  “What might look good near the house?” In this way, the painting expands.

For one woman, painting began as a series of colors and grew into a personal story.

She pasted a house and began expanding the lawn. Then she drew a bridge and weeks later, she added in a dog. At first, she was painting “a house, a bridge and a dog.” As the picture took shape, she said, “This is my house and my dog and this is the bridge we had to cross to get to the house.” The process of painting had loosened memories of her childhood home.

“When I share a piece of art by one of my students, I also share the story behind it,” Patrick says. “The act of creation is more important than the results.”

Tips:

Pick something that is easy for you, the care partner.

Put a point of color on the pages, then stand back. Offer support but don’t paint.

Enjoy the process and don’t get stuck on the results.

 

Thanks to Berna Huebner, founder of the Hilgos Foundation and co-producer of the documentary, “I Remember Better When I Paint,” for suggesting we meet  with Patrick.

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. 

COMING SOON: Connecting in the Land of Dementia: Creative Activities to Explore Together