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.

Advertisement

The Best Rx: Smiles

I’ve met a lot of doctors whom I admire, due to their intelligence, listening skills, willingness to collaborate, and their ability to have the occasional hearty laugh. Recently Veronica Kaninska, Certified Therapeutic Recreation Specialist, introduced me to a Doc I instantly fell in love with.

I went on rounds with Veronica and Dr. Moody, who often works with people who are living with dementia. I was so impressed with his knowledge of each individual and the warm way he offered his services. His first patient lit up when he and Veronica strolled toward her.

“How are you today?” he asked in a friendly avuncular voice. “Dr. Moody is here to check your mood. Are you feeling happy?”

“Yes, Dr. Moody, I’m happy now that you’re here.”

“Let me check your smile.”

She smiled broadly and Dr. Moody nodded approvingly.

“Let me see your eyes.”

She widened her eyes.

“Good. Your eyes are sparkling. I hope you keep your happy mood all day.”

“I will Dr. Moody, I will.”

We continued with Dr. Moody checking on some more patients. Each one enjoyed his company and he promised to come again and check on their moods.

After rounds, Veronica slid Dr. Moody off her arm and hung him near another popular puppet, Froggie, who she also uses for therapeutic purposes.

“People who are living with dementia often feel very comfortable communicating with puppets,” Veronica says.

I wondered if Dr. Moody was open to new patients and Veronica assured me he was.

Click here to meet the good doctor. 

“Puppets break down barriers,” Veronica says. “They have no religion, no gender, and no judgment. People living with dementia often feel comfortable confiding in a puppet.”

In a space of three to five minutes, I saw Veronica and Dr. M transform the energy of the people they visited. I asked Veronica to share a few tips for using puppets.

Click here to learn more. 

If you’d like to know more about Veronica and her work, read her chapter in Connecting in the Land of Dementia.

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.

Shall We Dance?

Normally, I do not like being the center of attention. But when Sebastian Tomkowski asked me to dance the merengue, I said yes. Actually, my first reply was, “I can’t dance.” But Sebastian assured me he would guide me, literally, every step of the way.

Sebastian is one of the dancers working with Rhythm Breaks Cares (RBC), a non-profit that specializes in bringing the energy and joy of ballroom dance to people who are living with dementia.  We were lucky to experience one of RBC’s sessions in a New York City care facility.

When everyone was gathered in a circle, Stine Moen, one of RBC’s founders, put on some Frank Sinatra tunes. Instantly, one woman danced her way into the room.  Her movements were graceful and stylish. When Sebastian invited her to waltz, she readily accepted.

Stine asked a seated women if she’d like to dance. The woman said, “I have this walker and I can’t dance with it.”

“You can,” Stine assured her. “You can use your walker and you and I can dance together.”

The woman demurred and sat swaying to the music. But when Stand by Me started playing, she hoisted herself to her feet, grabbed the walker, and began moving rhythmically around the room.

Two men sat in the circle, seemingly not registering the music. When Stine asked if they’d like to dance, one man held out his hand. Stine took his hand and let him guide the movements, while she made fancy arm gestures that looked as though they were waltzing in an elegant ballroom.Click here for dancing ideas.

One woman sat stock still, but sang along when the song “Fever” played.

“I used to be a singer and my husband played the piano,” she told me, when I sat beside her. “But I don’t remember the words.” She then proceeded to croon along with “I’ve Got You Under My Skin.”

The energy from the music and movement seemed to engage everyone. Even a man who seemed immobile, his mouth tight, his hands clenched up near his face, gradually softened his expression and lowered his hands to his lap.As for me, I reveled in the experience, dancing with the residents or smiling and moving our hands in time to the music. And of course, I loved my once-in-a-lifetime merengue experience.

 

I asked Stine to offer a few tips for care partners who wanted more movement in their lives.

Here are her suggestions.

“We always start with the music.” says Stine. “That sets the tone.”

Once the music is playing, if possible, make eye contact. Then smile and hold out a hand. Move in ways appropriate to your partner’s abilities.  

Celebrate every movement. Even swaying your arms together to the music is a form of dance.

“It’s not about getting the steps right,” Stine says. “It’s about connecting through music and movement.”

Want to learn more about the power of dance? Visit the RBC website. Good news—RBC offers training for qualified dancers, so they can bring this exciting program to their own communities.

Click here for additional tips from Stine.

Click here for tips from Sebastian.

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

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.

 

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