The Inside Story of Designing for Dementia

I love being around visionaries and Cathy Treadaway, PhD, is certainly one of them, changing the world one playful textile at a time. Cathy is the Professor of Creative Practice at the Cardiff School of Art and Design, Cardiff Metropolitan University, Wales, United Kingdom and she contributed to my upcoming book, Connecting in the land of Dementia: Creative Activities to Explore Together. I recently visited her at her university office in Cardiff, Wales, and wanted to share a few of her successes with you.  In these stories, you’ll find intriguing ideas you can adapt to your own situation.

Walking in the Park Without Leaving Home

They often visited the park, walking the paths hand-in-hand, admiring the flowers and foliage, listening to the birdsong, enjoying the breeze and the fresh air. But as his dementia progressed, he could no longer navigate the park. Until Cathy Treadaway and her team created a tactile textile replica of the park, complete with interactive technology. When he pressed one of the tree icons, he heard the sound of the wind. He pressed another and was rewarded with birdsong. Now, they sit together and he traces the cloth paths and creates the sound effects as she talks about the outdoors and reminisces about their times together.

For Cathy Treadaway, that’s what her work is all about: enhancing life and keeping people connected. She specializes in creating individualized “playful objects,” interactive textiles that mirror the person’s interests and passions.

Top Dog

When Cathy asked about one person’s special interests, a favorite pet, a Westie, came up again and again. Cathy and her team set to work, building an apron that featured a soft white Westie that barked when pressed. The team velcroed the dog onto an apron. The woman living with dementia was fascinated by the apron and by the texture and sounds of the dog. So was her two-year-old great granddaughter. The apron gave her focus and pleasure and also offered conversation points for her multigenerational family.

Making Visits Meaningful

“Sometimes visiting someone is hard,” Cathy says. “These individualized blankets and aprons can make the experience easier and more fun for all parties.”

Cathy’s work is focused on compassionate design, using textiles as a means for retaining and building relationships. She often asks people this question: “If you could design something to strengthen the relationship between yourself and someone living with dementia, what would you design?”

For more information about Professor Treadaway and her work, please visit www.cathytreadaway.com  and www.laughproject.info

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 

 

 

Fulfilling the Bucket List, Trip by Trip

Our friends Elizabeth and Charlie Miller are a constant source of inspiration. Here is one of the many ways they embrace life.

Elizabeth and Charlie knew they had to instantly work on their travel bucket list. When they met and fell in love, Charlie had been living with dementia for four years. He had not traveled much, but he wanted to see the world with Elizabeth. He asked a friend to help him plan a romantic trip to San Francisco, where he proposed to her.

After she said, “Yes,” they combined their love of beaches and nature and began adventuring, going on driving trips, taking cruises, and sharing a multitude of experiences. When flying grew too complicated and stressful for Charlie, they focused on local day trips or short driving trips.

“I used to have to travel alone,” Elizabeth says. “Now, I travel with Charlie. He enjoys the trip in-the-moment. How wonderful to have all these shared experiences. Plus, it’s renewing to be outside of our routine.”

Recently, Elizabeth and Charlie were driving around and Charlie said, “What was that long cruise last fall that had so many beautiful places?”

Elizabeth stopped to think. “Hawaii,” she said.

“Hawaii,” Charlie said, his eyes bright. “Wasn’t that the best cruise ever?”

Elizabeth smiled and felt a deep sense of happiness and connection. “You are right. It was the best cruise ever.”

To make every trip “the best” here are a few flying travel tips from Elizabeth:

• Try for a non-stop flight at a time best for the person living with dementia.
• Call TSA in advance and arrange for assistance in getting through screening.
• Ask for a Pre-boarding pass to minimize the stress in boarding.
• Get a business-type card that says, “Thank you for your patience with my companion. He is living with dementia.” Share this information, as needed.
• Carry a travel packet that includes a letter from an MD, stating that your companion has dementia, and a medical power of attorney.  Include doctors’ names and contact information as well as emergency contact information.
• Carry a bag of essentials: water, snacks, medications, a change of clothing, and activities.
• Be flexible, in the flow, and have fun!

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 

Get Cooking on Giving Back

The assembly line stretched around the spacious dining room table and each person focused fully on his task. One man spread mayonnaise on bread. Another placed turkey slices and another added cheese. Another slipped the sandwich into a baggie and others assembled the lunches, adding potato chips and a cookie. All worked diligently; there was a special purpose to this meeting of the Men’s Club at Dolan Memory Care Homes in Creve Coeur, Missouri. They were giving these homemade meals to the fire fighters in their community as a way of showing their appreciation.

 

 

 

 

 

 

 

 

 

Ten residents of varying abilities, including all levels of memory impairment, contributed to the sandwich brigade. Those who needed help had an assistant with them.

“The participating residents were filled with high energy and good spirits,” says Mary Kate Halm, LMSW, Admissions Coordinator of Dolan, who organized the activity. “They were excited to be engaged.”

The local fire department had invited the group to tour the station when they delivered the lunches. The experience included opening up the sides of the fire truck. One of the residents, who was usually indifferent to outings, used to be a tool designer. When he saw the tools in the fire truck, his eyes grew wide and he became very animated.

“Everyone enjoyed being engaged in a purposeful activity. They loved the tour and they asked excellent questions,” Mary Kate says. They wanted to know the details of their training, how much each truck cost, how much their equipment weighed, and more.  The residents weren’t the only ones engaged.

“The firemen loved the attention,” Mary Kate says. “Plus, they were patient, communicated clearly, and were considerate of those in walkers and wheelchairs.”

The community volunteer activity generated a lot of joy and curiosity.

“They were completely connected to the experience,” Mary Kate says. “They were learning, they were giving back, and they were fully present. We created a moment of joy and that’s all that matters.”

Get ready to give back:

Mary Kate offers these tips for connecting with the community and giving back.

• Look for a service organization that you admire. This can be emergency responders such as fire fighters, police, sheriffs, EMTs, as well as animal rescue teams, cancer support organizations, and more.
• Find a project that’s fun for you and for the person living with dementia, a project you can both participate in. If you have friends and family who’d like to help, this is a great time to get others involved.
• Coordinate with the organization and find a time to deliver your gifts. If it’s of interest, ask for a chance to learn more about the organization.

For more interesting activity ideas, visit https://t.e2ma.net/message/gxreo/4bbql

https://www.facebook.com/DolanCare1994/

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 

Music Matters in the Land of Dementia

How can creating a personal playlist, listening to favorite tunes, singing simple melodies, and pretending to conduct a symphony improve your life? Come to this free workshop and find out.

Music Matters in the Land of Dementia (and Everywhere!) An Interactive Program for Family Friends, Professional Care Partners, Activity Professionals, Musicians, and More

In this lively one-hour session, coming up on July 20, we will share ideas for using music to deepen connections with people who are living with dementia. Some of these ideas, gleaned from top innovators and researchers, are from my upcoming book, Connecting in the Land of Dementia: Creative Activities to Explore Together. According to numerous studies, music improves the lives of those living with dementia by reducing the need for psychotropic drugs, increasing socialization, and relieving depression. The event is going to be joyful and fun and we’d love to experience it with you.

Here’s the workshop information:

Deepen your connections, increase communications, and ratchet up your fun quotient by adding music into your caregiving journey. Authors and dementia advocates Ron Zoglin and Deborah Shouse team up with guitarist Rod Fleeman and singer Cynthia Schroer for this hands-on session. They’ll share easy music-oriented ideas that can soothe anxieties and unlock creativity in people who are living with dementia, as well as splash notes of joy and renewal into the care partners’ lives.

We are partnering with Shalom University to present this free session on July 20^th from 10:00 to 11:00 at Village Shalom, at corner of 123^rd and Nall, 5500 W 123^rd Street, OP 66209. To sign up for this musical experience, just call Bree at (913) 266-8469 or email  vsu@villageshalom.org as soon as possible.

Victor Hugo said it so beautifully: Music expresses that which cannot be put into words and that which cannot remain silent. 

Music Matters

During my mom’s dementia journey, music often inspired and connected us. Here is one of those melodic moments, excerpted from my book, Love in the land of Dementia: Finding Hope in the Caregiver’s Journey. The story is set in my mom’s memory care community.

Rochelle, the activity director, sticks in another tape and soon Stardust is playing. 

“Let’s dance,” she says, motioning everyone to stand.

Mom looks up and I offer her my hand. 

“Want to dance?” I ask her.

“What?”

“Want to dance?” I repeat, making a swirling motion.

“What else,” she says, standing up.

My parents have danced to this song many times, my mother coaxing my father onto the dance floor. I hold hands with Mom and move back and forth to the music. She laughs and does the same. I twirl her, and she walks around in a jaunty little circle. For a moment, her energy and charm have returned. I feel like I have found my long-lost mother. If my father were here, he would not be surprised. He is certain she will return to him and takes every word, every gesture of affection, every smile as a sign of hope.

“Hope is everything,” Dad told me just last week. “I find something hopeful and I milk it for all it’s worth. If it doesn’t work out, then I search for something else. Otherwise, I am in despair.”

I twirl my mom again. It is actually our first real dance together…

 

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

 

How to Create a Network of Dementia Friends

Ron and I recently traveled to Europe and we were lucky to meet with several creative thought leaders working in the field of dementia. Over the next weeks, we’ll share some of their insights with you, ideas we can incorporate into our every day lives as care partners, friends, and dementia advocates. We met with Philippa Tree, Senior International Officer Alzheimer’s Society UK, in a charming coffee shop located near the Tower of London.

The U.K. has more than one and a half million Dementia Friends, and 10,000 Dementia Friends Champions, volunteers who deliver the Information Sessions. Their goal–four million Dementia Friends in the next two years.

Philippa Tree is part of the Dementia Friends team at Alzheimer’s Society UK. The Dementia Friends programme is a social action movement that aims to transform the way England and Wales think, act, and talk about dementia. It started in 2012 when the Prime Minister of the United Kingdom, in partnership with Alzheimer’s Society UK, urged his country to focus on building dementia-friendly communities.  He became a Dementia Friend and challenged others to join him.

The free Dementia Friends Information Sessions help people understand what living with dementia might be like. The sessions also offer small action steps so people can make a difference to those affected by dementia in their community.  Anyone of any age can be a Friend by attending an information session or watching an online video.

Philippa’s work with Dementia Friends extends beyond the UK and across the world. She’s recently been collaborating with partners in the United States to roll out a pilot Dementia Friends program in the near future. At the recent Alzheimer’s Disease International  Conference in Budapest, Philippa facilitated a session with countries including Nigeria, Germany, Israel, Scotland, Canada, and Indonesia.

“After only two years, Dementia Friends has become one of the UK’s biggest social movements on any disease.” Philippa says. “We’re working on using positive language and spreading positive messages as we tackle the stigma around dementia. My current role is to support countries worldwide to implement a Dementia Friends program, and to learn and share experiences.”

While Philippa and her team are working in England and Wales, and worldwide, each of us can make a difference on a local level.  Here are examples of action steps people have enjoyed taking:

 

• Share positive stories about friends and family who are living with dementia. This helps reduce the social stigma.
• Volunteer for creative programs and events for those who are living with dementia.
• Spend time visiting family and friends who are living with dementia.
• Talk to other care partners and ask how their lives are enriched through their caring experiences.

For more information about the Dementia Friends programme, please visit their website : www.dementiafriends.org.uk.

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