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.

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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.

Sharing Your Caregiver’s Story

My mother’s Alzheimer’s drove me to write. My writing inspired me to speak. I have received enormous pleasure from connecting with people all over the world, sharing my stories from Connecting in the Land of Dementia and from Love in the Land of Dementia. Now, I’m offering you tips for sharing your caregiver’s story.

 

It All Started with Grief

When I initially realized the depth of my mother’s memory loss, I was shattered with grief.

Every day I went through this:

Visit with mom.

Drive home, wiping tears from my cheeks.

Stumble into the house, walk into a chair or table, and misplace my car keys.

Sit at the dining room table and stare numbly into space.

One day, during the “staring numbly” phase, my partner Ron said, “Are you writing down your feelings?” It was a smart and sensible thing to say; the sort of suggestion I might make to him in a crisis. I was, after all, a writer.

“I don’t feel like writing,” I said.

But his words stayed with me. The next day, I slightly altered my behavior.

Visit with mom.

Drive home, wiping tears from my cheeks

Stumble into the house, walk into a chair or table, and misplace my car keys

Sit at the dining room table and write numbly for 20 minutes

 

Pouring Emotions Out & Inviting Understanding In

I poured out my fears, anger, and grief. After doing this for a week,

I began noticing how interesting my visits with Mom were; we were explorers on a wild inner trek.

I started documenting our time together, sometimes even taking notes during my visits. I wrote about the challenges, humor and blessings. I wrote about my conversations with my father, with friends and family and with the aides, the nurses, the social workers. As I wrote, I saw there was much hope, promise and energy in my new world.

As I shared my work with friends and family, I realized I was chronicling my mom’s last years and capturing part of our family history.

Sharing Your Caregiver’s Story

How do you take a challenging part of your life and bring it to the page?    Here are a few simple tips:

Pour Out Your Feelings  

Give yourself time to feel your emotions, whether it’s through writing, art, music or other expressive arts. Writing down your feelings helps you understand the depth of what you’re going through. For me, writing helped change my fear into curiosity.

Notice the Details

Write down the particulars, noting simple concrete facts. You are a researcher collecting data.

Uncover the True Story

Look for the universal meaning in your specific experience. How have you changed? How will the reader change through reading your words?

Ask for Feedback

Read the story aloud to someone and see how it sounds. What’s working and what’s missing? Ask colleagues for a professional critique. Think over their advice and decide what is right for you.

Celebrate your Accomplishment

Sharing your caregiver’s story takes courage.  Yet, for me, it is one of the most cathartic and meaningful things I  do.

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.

Paradise Lost and Found: Two Women Take Action on Alzheimer’s

Like most visitors to Bermuda, we were interested in the lush sand beaches and warm tourmaline ocean waters. But we were also interested in meeting Liz Stewart and Marie Fay of Action on Alzheimer’s. These  two women are using their considerable energies, connections, and talents to enrich the lives of Bermudians who are living with dementia. Liz and Marie inspired us with their passion and accomplishments and we wanted you to meet them as well.

~~~~~~~~~

“Now what?”

That was the question Liz Stewart asked after her mother was diagnosed with dementia. It was 2004 in Bermuda and Liz could not find any support services for herself or her mom. She was thrust into the care partner’s role without any education on the subject of dementia. Liz knew, “It’s not what you know; it’s what you can learn,” and Liz began learning fast. She soon realized she was not alone. In Bermuda, there were hundreds of people living with dementia.  Liz’s quest to help her mother turned into a determination to help others living with dementia. She formed a non-profit organization, Action on Alzheimer’s, in late 2012. She volunteers her time and works with Marie Fay, an occupational therapist with special dementia training, offering support services, education, and training throughout the islands.

Liz and Marie are a two-woman transformation team who have gathered other like-minded people.

They provide free dementia training to the island’s care communities, hospitals, doctors, and families. They collaborate with local musicians and movement specialists and host frequent expressive arts sessions, including drumming, movement, and singing. They work with government officials, advocating for those who need more resources.  And they are talking about the issues, raising consciousness through Alzheimer’s Awareness runs, wine-tasting fundraisings, and community events.

Now, when someone is diagnosed with dementia on Bermuda, they don’t have to feel totally isolated and confused. They can turn to Action on Alzheimer’s.

If you know of other people who are making a difference, please let me know. I love being inspired by the passion and compassion of world-changing souls.
To learn more about Action on Alzheimer’s, visit  www.alzbermuda.com

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.

Five Creative Tips for Meaningful Engagement

 

Each person I interviewed for Connecting in the Land of Dementia inspired me with something meaningful and unique. I wanted to share a few of their ideas with you.

Before I do, here’s a question: What does the song FrimFram Sauce, the recipe for Johnny Marzetti, and cooking have to do with creativity and dementia? Join us Sunday October 9th at 1:30 at the Kansas City Plaza Library to find out!  RSVP 816-701-3407

The Often Hidden Poetic Potential

“Value what people with dementia are saying, write it down, tape record it, affirm them when they say interesting or beautiful things because that’s their personality showing through in a new way,” says John Killick, internationally acclaimed poet, workshop leader, and author of  Communication And The Care Of People With Dementia.

Even though he’s been orchestrating workshops for years, John is still amazed at the strength of the imaginative spirit and at the quality of the poetry.

“Creativity is essential to people with dementia,” John believes. “It bypasses the intellect, provides valuable experiences, and enhances their sense of personhood.”

 

 

Making Art Soothes and Engages

“Research is now recognizing how making art soothes, and engages people with dementia,” says Shelley Klammer, artist, therapist and the author of the e-book How to Start An Art Program for the Elderly. “Imagery often expresses what words cannot. A pre-drawn structure allows an anxious painter to relax into the process. Painting familiar subject matter can help a person with dementia settle into a pleasurable, meditative state.”

Uncovering and Celebrating Creativity

“Our basic instincts include discovery and invention, and thus creativity,” says John Zeisel, PhD, author of  I’m Still Here: A New Philosophy of Alzheimer’s Care. “These abilities are hard-wired and people living with dementia can still draw on these skills. They are often exceptionally perceptive, increasingly creative, and have high emotional intelligence. It’s our job to uncover and embrace their abilities so they maintain dignity, independence, and self-respect.”

The Delight of Going to Cultural Activities and Viewing Art 

“Looking at art and making observations gives people living with dementia a chance to exercise their imagination and creativity,” says Susan Shifrin, PhD, director, ARTZ Philadelphia. “Many people with dementia have a heightened sensitivity and openness to art, even if they had no previous artistic aptitude.”

“Going to cultural activities offers people a sense of normalcy and gives them a date to put on their calendars,” says Teri Miller, with the Alzheimer’s Association Houston & Southeast Texas Chapter. Teri has witnessed the power of creativity and the arts. As the Early Stage Program Manager she says. “When people living with dementia go with friends or care partners, they have an experience to discuss. Even people who say, ‘Oh, I don’t care for museums,’ usually have a great time.”

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.