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

An Inside Look at Creative Aging

We are huddled on the floor, concentrating on our assignment. Each of us has shared an important saying or proverb that impacted our lives and now we are turning those six sayings into a song. We have a daunting five minutes to accomplish this creative task. However, we also have songwriter and musician Vanessa Torres from Lifesongs to guide us. After we’ve shared our sayings, Vanessa instantly comes up with a theme–These Are Things That I’ve Learned. Our song centers around that chorus, with each of us weaving in our personal sayings.

In the other three corners of the room, groups are collaborating, turning their sayings into spoken word, dramatic movement, and theatrical improv. Our facilitator, Susan Pearlstein, Founder Emeritus for the National Center for Creative Aging in Washington, DC, and the Founder of Elders Share the Arts in New York City, calls us back to the circle and each group performs their piece. In mere minutes, we have learned something important about each person, we have created an artistic work with people we’re just getting to know, and we have appreciated the power of creating something together.

This was an exhilarating beginning to the third annual NCCA conference on creative aging.

These are things I that learned at the conference:

Every person is inherently creative. Of course, I knew this. But it is so lovely to be reminded in so many ways. It is so lovely to be invited more deeply into your own creativity through song, dance, theater games, art, movement, and brainstorming. It’s inspiring to be in a room where so many are expressively at ease with their creative spirits.

Here are some insights from conference luminaries. Some are not attributed because I was so raptly listening I didn’t write everything down!

“Creativity is a moment when we look at the ordinary, but see the extraordinary.”

“Art is for everyone. It’s not a frivolous add-on. It’s a vital part of life. Everyone is creative. Dream and dispel the myth that ‘I can’t do art.’ Aging has been treated like it’s all gray but it’s really expansive colors.”  Remarks of Jane Chu, Chairman of the National Endowment for the Arts, Sept 25th, 2016.  Click here to enjoy a video of the Chairman

“Feeling useful is a human right.”

“Fifty percent of our elders feel lonely.” Vice Mayor Karsten Klein, The Hague

“By listening closely to one another, we can help illuminate the true character of this nation, reminding us all just how precious each day can be and how great it is to be alive.” Dave Isay, founder of

StoryCorps, via Eddie Gonzalez

“Bringing what is inside to the outside; it is important to do this as we age.” Mary Luehrsen, National Association of Music Merchants

“Creativity is the connective tissue that we use to build community across diverse differences.” Anne Basting, TimeSlips, ™ Recipient of a 2016 MacArthur Genius Grant

“Instructors need people living with dementia as co-teachers to transform educational goals. “ Dr. Elizabeth Lokon, Opening Minds Through Art

John Killick (right) and Gary Glazner celebrating the power of poetry

 

John Killick, poet, author and innovator in creativity and dementia, heard this wisdom one day while visiting a memory care community:

“Words of comfort are free, but very necessary.”

“I love it when you hold out your hand and water pours from it.”

“If you don’t ask for the moon, you don’t even get a piece of cheese.”

“You have to introduce yourself or else it all goes brittle.”

“Life is the slackness, the film and the veil.”

“Every time I look for home, I find you.”

John says, “This tells me that people with dementia are really creative and all we have to do is listen and be enriched.

This is just a soupçon of things that I learned. I wish I could have talked to every person at the conference. I wish I could have listened full on to their stories, to their sayings and proverbs, to the things that they knew and the things they had learned. Which is one reason I hope to return to the conference next year.

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 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.