Josh Rice, a theatre maker and teaching artist, discovered the power of play in the dementia journey when he was still in graduate school. As part of a school project, he partnered with a senior living community on a therapeutic puppetry and improv-based program for people living with dementia.
Together, Josh and the seniors designed and made puppets, and created performances that included songs, personal stories, and comedy. As he worked with the new artists, he noticed people were using their puppets to tell stories. They expressed emotions and they enjoyed the chance to play and have fun. Staff applauded the participants’ short-term memory gains and tactile improvements.
“Plus, we were creating exciting work and performing for people,” Josh says.
One afternoon, a woman who was having a difficult day burst into the puppetry classroom. She was non-verbal but acted out aggressively in a way that could have potentially agitated others. As Josh and the students were rehearsing, she walked in and before she could disrupt the class, Josh made eye contact with her, and gently touched her shoulder. He quietly talked to her and invited her to join in or sit and watch. Within minutes she calmed down.
“I put a puppet in her hand and all of a sudden her language came back. It was like a switch had been turned on,” Josh says. This woman filled him with hope and inspired him. “I want people to understand that people who are living with dementia sometimes need us to be patient and keep giving them chances,” he says.
Being in the Moment
Josh knew the potential power of theatrical play and experimented with improv sessions for people living with dementia. The experiment worked.
“For improv, you have to listen and react,” Josh says. “The past or future doesn’t matter; it’s all about the present moment.”
He created a safe, nurturing, and creative atmosphere, offering structured improvisations, and invited his new improv team to play.
“They loved it and it was a thrill to watch them discovering new things and coming up with creative dialogues,” Josh says. “Play is an integral part of our lives and most of us need more of it.”
You know what it’s like, creating a program series for the first time. You try to think of everything, knowing that you’ve probably left something out. You hope plenty of people will attend and worry that no one will show up. The weather teases you, threatening snow or rain, thunder or wind. The “what if’s” line up, a mean group of scolders: “What if the elevator breaks? What if the speaker doesn’t show up? What if the snacks don’t arrive? What if the KC Memory Cafe doesn’t work!”
But, as most of us know, worry isn’t really that useful.
The debut of the KC Memory Cafe was beyond our highest expectations! On March 20, 2018, at 10:30 at the Plaza Library, the educators from the Kansas City Zoo showed up early, riding the elevator down to the lower level with their exotic offerings. The weather was perfect and a lovely group of 40 plus care partners and people living with dementia joined us, delighting in the delicious snacks. And they were even more delighted with the program, all of us laughing at the antics of the cockatoo, leaning forward to see the Vietnamese Tree Frog cozied in his glass aquarium, and petting the chinchilla, with a fluff of fur that felt like a cloud.
“I love this animal,” one attendee said, smiling at the blue tongued skink.
“This is the softest fur I’ve ever experienced,” said another, reveling in the chinchilla.
“That bird is so funny,” said another, laughing as the cockatoo bounced up and down, “dancing.”
After learning about the animals, we talked about our own pet memories. It was a wonderful morning and we can’t wait for our next Memory Cafe, on April 17, 2018.
Click here so you can experience the fun of the Cafe.
Want to join us on April 17 for our next Cafe? Here’s the scoop!
Weather Wonders: The Inside Story
Metereologist Karli Ritter Reveals Weather Mysteries 10:30 am on Tuesday, April 17, 2018. Plaza Library Lower Level. Join us for the KC Memory Cafe, a free event dedicated to creating educational and social experiences for people who are living with memory loss and for their care partners.
Our Team — Standing: Emily Cox, April Roy, Carol and Dennis McCurdy. Sitting: Ron Zoglin and Deborah Shouse, Jennifer Walker, Mandy Shoemaker
Throughout our journey in Vietnam, we met a number of inspiring elders. These include an 87-year-old public letter writer in the old Saigon train station, a 67-year-old woman carrying baskets of pomelos and bitter melons, a beautiful 74-year-old gardener hacking at weeds with a machete, a 100-year-old matriarch in a farming family, and an 83-year-old village chief. Because the life expectancy in Vietnam has risen over the last 20 years, its people are living longer. Along with that blessing comes an increased chance of dementia. Neurologist Trần Công Thắng. MD, and his team, Nguyen Tudny Vy and Le Thi Yen Vy, are dedicated to working with medical professionals and community members, educating on dementia.
“Many people think memory loss is just part of normal aging, ” Dr. Thang told us, when we visited him in Choray Hospital in Saigon. “We want people to understand that dementia is not a regular part of growing older—it’s a brain disease.”
Twenty years ago, few people were discussing dementia in Vietnam. But now, it’s a vital issue for two reasons. First, the country’s life expectancy has increased from age 64 to age 75. Second, many families no longer have seven or more children; they have two to three offspring. This intensifies the burden for family caregivers.
Dr. Thang is a researcher, speaker, educator, and a founding member of the Association of Vietnamese Alzheimer’s Disease and Neurocognitive Disorders. Through his classes and diagnostic clinics, Dr. Thang and his colleagues offer people much needed information and resources. He is partnering with a local rehabilitation hospital in creating a day program for those living with dementia. The program will offer cognitive stimulation and social engagement for those living with dementia.
Person by person, Dr. Thang is helping healthcare professionals understand the behaviors and issues associated with dementia. He hopes to make life better for family caregivers and their family members who have memory loss.
“Here’s some medication,” the neurologist told Mike Belleville. “See you in six months.” The doctor stood up to leave, but Mike just sat there, exhausted from months of struggle and confusion, worn ragged from all the tests and consultations. For months, Mike, age 52, had been “hiding under a rock.” His mind wasn’t working right and he worried he’d make a mistake, so he withdrew from his busy life. Now, he was numbed by the diagnosis he’d just received; younger onset Alzheimer’s.
Those three words seemed insurmountable.
“My wife and I had no connection to support services and we had no idea what to do next,” Mike says. “We felt so alone.”
Without his job as a Senior Telecommunications Technician at Verizon, his community volunteer projects, and his hobby of photography, Mike sank into a depression. After several months, his wife found a program at their Alzheimer’s Association that focused on finding a purpose and living well with dementia.
“From meeting others who had the diagnosis, I realized, I can still enjoy, do, and learn,” Mike says. “But more importantly, I realized that I have a voice. I want to use that voice for as long as I can.”
Even though he had no experience with public speaking, Mike plunged in and became an outspoken advocate, visiting Washington D.C., and speaking at a number of dementia forums.
“Somehow, I was comfortable discussing dementia,” he says. “Even when I was interviewed in front of 1300 people, I felt like I was sitting in a coffee shop, talking to a friend.”
He joined the advisory board of the Dementia Action Alliance and expanded his speaking and advocacy work.
Cooking Up New Skills
Mike was frustrated that he could no longer contribute financially to his household. So he searched for ways he could help around the house. He volunteered to do laundry and soon learned he did not “know when to fold ‘em.” Then he made a discovery: he could combine his desire to learn, his creative curiosity, his love of technology, and his desire to help through the joys of cooking.
Prior to dementia, hamburgers and hot dogs comprised Mike’s culinary repertoire: he could grill with the best of them.
“Thank goodness for Pinterest and YouTube,” Mike says. He searches for recipes on-line, then scans YouTube for a demonstration video, which he watches several times. He uses an App called Paprika, so he has the recipe in front of him. Then, Gordon Ramsey style, he lines up all his ingredients.
“Through trial and error, I learned to put away each ingredient after I added it in,” Mike says. “That way, nothing gets used more than once.”When his wife returns from work, they put the dish on the stove and cook the rest of the meal together.
“She’s very appreciative of my new talents and I’m happy to be exercising my brain and nourishing our family,” Mike says.
Putting Purpose to Technology
Early on, Mike volunteered at a local senior center, starting a technology group called, Mike’s Google Gals. Once a week, he helped people with their phones, tablets and computers. When he and his family moved, he volunteered to host a free Tech Corner on Dementia Action Alliance’s website, offering his problem solving skills as needed. He helps people get on line so they can participate in a vibrant virtual community.
“I get just as much out of this as I put into it,” Mike says. “The more I stay active, the better I am.”
Mike and his wife share an electronic calendar, so she can support him with his schedule. His vibrating smart watch offers reminders of meetings and appointments.
“Because I’m wearing the watch, I don’t have to worry about misplacing it and missing a text or an email,” Mike says.
Mike envisions home automation devices extending beyond moderating lights and temperature.
“I have an issue with anxiety,” Mike says. “I would like a wearable devise that automatically detects my anxiety. As I become more stressed, the device could turn on my TV, which would be tuned into a soothing video of my wife talking to me. Or it could turn on a calming musical playlist.”
Mike also envisions sensors that would alert his wife if he turns on the stove or walks out the front door. He would like to help develop these types of products.
Recipe for Living Well with Dementia
Mike views living with dementia as his new career.
“I’m using the same skills I honed in my earlier career,” he says.
His prescription for living well includes staying socially engaged, finding a purpose, and helping others.
At first, Mike saw his diagnosis as the end, but now he’s busy living. He has the Alzheimer’s logo tattooed on his arm with the motto, “Live life today.”
“We are here to see Dr. Nguyen Thanh Binh, head of the Department of Neuroloy and Alzheimer Diseaese,” I tell the guard at the National Geriatric Hospital of Vietnam in Hanoi, showing him my folded paper with her name printed on it.
He grins, then points to a full size sheet of paper in the security booth’s window with our names printed on it. We follow him into the hospital and up a flight of stairs. After a short wait, Dr. Binh warmly welcomes us into her office. She has a table ready with chairs and tells us she has invited others from her department to talk to us as well. Another Dr. Nguyen Thanh Binh arrives. Her Phd thesis was on easing the burden for family caregivers. Dr. Ngan Thi Hong Anh, doctor of rehabilitation, joins us. She seeks non-medical solutions for improving quality of life. Nguyen Ngoc Anh, RN, completes our group. She works daily, communicating with and caring for people who are living with dementia.
For two years. Dr. Binh and her team have been running a pilot study, inviting people who are living with dementia to attend a three day a week program that focuses on engaging socially, physically, emotionally, and intellectually. They use music therapy techniques, they bake traditional cakes together, and they enjoy various arts and crafts projects. All these therapies offer physical and occupational therapies, as well as vital social interactions. The project has been a huge success, with both family caregivers and people living with dementia enjoying the results. Besides giving the caregivers a much needed respite, families report improved quality of life and and increased abilities in the activities of daily living.
“Symptoms improve,” Dr. Binh reports. “Patients want to keep attending and families have their burdens eased.”
Dr. Binh and her team have extended the program.
Often people come to the hospital, seeking answers to issues related to memory loss. Many elders live at home with extended families, and their children and grandchildren are frequently confounded by their cognitive impairments and other symptoms of dementia. Dr. Binh and her associates offer education, information, and comfort. They describe the disease and try to help families move beyond their initial feelings of hopelessness. They encourage families to accept and embrace their elder and support him or her in living a meaningful life.
We left our meeting with these remarkable women feeling inspired. They are doing important work and making a difference for the people of Hanoi and Vietnam.
As Director of Operations for a national call center, Paulan Gordon’s work required an intense travel schedule, detailed project management skills, and a rigorous adherence to industry standards. So when she started feeling confused, she attributed the struggles to stress. Some days, she felt so overwhelmed that she locked herself in her office and called her husband to come pick her up early.
She was asked to step down from her position. Initially, the loss of her career was both financially and emotionally staggering. Suddenly, she had no purpose, no income, and no peer group. She had to reinvent her life.
In 2012, at the age of 57, Paulan was diagnosed with vascular dementia. After a period of uncertainty, Paulan began using her interpersonal, communication, and management skills and volunteering as a mentor and a dementia advocate.
“I’ve learned there’s a lot more to life than success in business,” she says.
When she was working, Paulan was so busy she didn’t have time to build friendships. Now, through her mentoring, she has developed deep connections with others who are living with dementia.
“The relationships you create within the walls of dementia are so intimate,” Paulan says. “People talk very openly about their personal problems and challenges. I feel enriched, being part of these conversations and having such close friends.”
Her work as a dementia mentor has also given Paulan a sense of purpose.
“I work with four people and all of them appreciate my phone calls and my caring. That appreciation boosts my spirits,” she says.
Through her mentoring and advocacy work, she’s met doctors, lawyers, teachers, entrepreneurs, and others who have applied their intelligence and skills to living successfully with dementia.
Speaking out for Adaptation
When Paulan gave business speeches, her hands grew clammy and her mouth dry. She battled nervousness and worried about getting facts wrong and making errors.
“Now, I don’t get very nervous,” she says. “I’m speaking from my heart about things close to me, so I can’t make a mistake. Plus, I’m motivated: I want to help others and I want people to understand the truth about dementia.”
Letting Go of Difficulty
“You’ve asked me that question five times already,” Paulan’s husband says.
“Then it must be really important,” she answers.
Paulan is happy she can laugh at trying situations. She has let go of things she can no longer do. She stopped driving because spatial relationships were difficult for her. Paulan knows she’s forgetful and sometimes repeats herself. Her husband and family take that repetition in their stride. She’s also trained her family not to interrupt her when she’s talking, because she can easily lose track of what she was saying.
“My husband doesn’t call attention to my deficits and I forget I have them,” she says.
Proactively, he reminds her about meetings and appointments. She uses a big planner and makes detailed notes, including instructions on how to sign onto the internet, and notes on various conversations.
Changing Reading and Money
Paulan is constantly using her creativity to solve problems. She was an avid reader, but her memory retention has diminished and understanding complicated novels with dozens of characters became a challenge.
“If I put down a book, I can’t remember what happened at the beginning,” she says. “Although there is an upside to the situation: I could save money reading the same books over and over again.”
She temporarily put down her tomes and started reading short stories and magazines. This allowed her to continue her beloved hobby without so much frustration.
She also worked around her reduced mathematical abilities. When she shops, she hands the cashier an extra dollar, so she doesn’t get overwhelmed by counting out coins.
“I hope people are honest when they give me change,” she says.
Stirring up her Spirits
“I don’t worry about dying” she says. “I basically feel positive.”
Many people have a distorted view of dementia. With her speaking and writing, Paulan helps people understand the truths of the disease.
“I like sharing ways to support friends and loved ones who are living with dementia,” she says. “This information helps prevent decline and dramatically increases the well being of both care partners and people living with dementia.”
Meanwhile, Paulan’s advocacy and mentoring work has filled her life with depth, friendships, creativity, and purpose.
“Thank goodness for this program,” one of our Movie and Memories’ guests told us. “There are so few places Mom and I can enjoy going together these days.”
“Thanks for this cookie. I could really use a little nurturing today,” another said.
“My goodness, I was delighted to learn about this program,” another said.
“What a treat, to have these films and these treats for free,” a couple told us.
Everyone arrived ready for movie magic. One of our volunteers from the Alzheimer’s Association brought a generous tray of cookies and brownies to share with everyone.
“How will we ever eat all those cookies?” I wondered initially. Well, it turns out, we had a large and wonderful group of sweet sweet-lovers, who thoroughly enjoyed the films and the feast.
Our three Oscar-nominated shorts met with great approval and included Glas, Joe’s Violin, and Room on a Broom. When Michelle Niedens, Director of Education and Programs at the Heart of America Alzheimer’s Association, asked us all, “Which short would you have voted for?” it was between the inspiring documentary of a Holocaust survivor giving his beloved violin to a blossoming music student and the beautifully inclusive and tender animated Room on a Broom.
Save Sunday April 8 at 2:00 for our next Movies and Memories event and join us for this meaningful dementia and family friendly film series. To make sure you know about the series, sign up for the library’s newsletter at http://www.kclibrary.org/newsletter/special-events-signup We’ll be part of the Kansas City Film Festival—visit Kansas City FilmFest to learn more about their line up. Want to help us spread the word or have an idea for a great movie to show? Just email Deborah at firstname.lastname@example.org
Once again, Robert Bowles, Jr., age 65, could not sleep. Since he’d been diagnosed with Lewy Body Dementia two years ago, his nights had randomly been plagued with terrifying hallucinations and vivid nightmares that he often acted out. He was exhausted, depressed, and anxious. Plus, he had had to sell his beloved pharmacy and prematurely end a meaningful 40-year career as the community’s trusted pharmacist.
That dismal night, Robert awoke at 1:00 a.m. and dragged himself into his office. He felt a horrible heaviness in his heart
and he cried out to God.
“God,” he said, “Take me home. I don’t want my family to go through this disease. I can’t endure this any longer.”
As he sank into a chair, he heard a voice, as strong and clear as if someone was sitting right beside him: “Use your five life principles for people who are living with dementia.”
Robert slapped his hand onto his forehead and said to himself, “God is not through with me yet.”
And that realization filled him with hope.
Amending His Purpose: The Five Principles
Love, care, education, encouragement, and hope: these were the principles Robert adhered to with his work, his family, and in his community.
“Understanding that those same tenets could help families affected by dementia was a transformational experience that gave me purpose,” he says.
Robert believes, “People living with dementia need to be encouraged to maintain purpose. While your original purpose may not be possible, you can always modify your vision and continue to live with depth and meaning.”
Throughout his career, Robert was always purpose-driven and outcome-oriented. Along with those qualities, he infuses his current advocacy and mentoring work with compassion. Early on, he realized, “People don’t care what you know; they want to know what you care about.”
Standing up for Personhood
“I made a decision that I would not let dementia define who I was,” Robert says. “ I’m still Robert. I believe in personhood.”
He also believes in learning, overcoming fear, and trying new things. Robert serves on the Georgia Alzheimer’s and Related Dementias (GARD) State Plan Group. He is involved with the Lewy Body Dementia Association (LBDA) and works with the Dementia Action Alliance and the Dementia Spotlight Foundation. He qualified as a trainer at the Rosalyn Carter Institute and he completed the coursework to became a Certified Eden at Home Associate. Robert has also been trained in Dementia Beyond Drugs, which teaches ways to decrease behavioral expressions without medications.
Recently, a lady asked him, “How are you able to speak when you have dementia?”
Robert answered, “When I sit there waiting to speak, my mind is all over the place. I wonder, ‘Will I be able to speak, or is the train going to jump the track?’ Then I tell myself, “I am going to have fun.”
He has fun and he speaks from his heart. Audiences connect with him.
Recently, Robert told his neurologist, “I don’t have time to die.” Every year, he typically speaks to more than 100 groups, sharing his story, breaking down stereotypes, educating people on dementia, and inspiring people to live with heart and purpose. ##
Practical Tips from Robert
Adopt the ASAP philosophy: Acceptance, Socialization, Attitude, and Purpose. Accept your disease and know you are not your disease. Keep and expand your social network. Live with a positive attitude. Be fueled by a purpose. ASAP was one of the touchstones that delivered Robert from “the Valley of Darkness.” “Both care partners and people living with dementia benefit from ASAP concepts,” Robert says.
Prepare for your doctor’s visits. As a practicing pharmacist, Robert noticed many people did not prepare for medical visits and therefore didn’t get the information they most needed. He keeps a list of his symptoms. As changes occur, write them down. Before the visit, select your top three issues. Hand this list to the nurse to give to the doctor. “You save time and get better outcomes,” he says.
For more information about Robert, please visit:
For more information about living well with dementia, please visit Dementia Action Alliance, https://daanow.org
One of the many things we love about sharing ideas and stories that connect people during the dementia journey—we never know the brilliant, witty, and amazing things our participants will say!
Let me set the scene:
It’s Thursday evening and Ron and I are presenting a program in a church basement. Our audience is a group of dedicated parishioners who serve in the Stephen Ministry, which offers help, hope, and healing. Several are reaching out to people who are living with dementia and want to learn tips for having enriching visits. As we discuss ways to assist people in adapting hobbies and activities, I invite the group to get into dyads and share a favorite hobby and some of the things they enjoy about it.
This is a lively bunch of people and they instantly start talking.Two women on the front row laugh uproariously throughout the exercise. Of course, I am curious. When the exercise is over, I ask, “What are some favorite hobbies?” One of the laughing women points to the other and says, “Would you believe, the first thing out of her mouth? She said, ‘I’m a hooker.’”
There was a bit of a nervous silence.
“A rug hooker,” the woman explains, grinning.
“I love to make hooked rugs and share with them people,” she says.
A man leans forward and looks right at her. “I’m a hooker too,” he says and pauses for dramatic effect. “I like to hook fish. Fishing relaxes me.”
The room lights up with generous laughter. Then we continue the practical matter of adapting hobbies.
So, hopefully you’re now “hooked” on this subject. Here are a few practical tips for adapting hobbies for and with those who are living with dementia.
- Discuss which hobbies are most important.
- List the components of each and learn which parts the person most enjoys.
- Adapt the experience as needed to fit changing abilities and interests.
For gardeners, is it the feel of their hands in the soil?
Is it producing flowers or harvesting vegetables?
Is it having something to take care of?
For those who like quilting, is it making the squares or the finished product? Is it the companionship with other quilters?
Or is it the texture and colors of the fabric?
For those who like cooking, is it the measuring and stirring?
Do they enjoy the aromas and textures of the ingredients?
Is it the joy of preparing something that thrills others?
Or is it the simple pleasure of tasting delicious foods?
With those answers, you can support the aspects of the activity that really resonate and enrich their lives.
Many people who live with dementia deal with social isolation. A big thank you to Nora Ellen Richard and those who are reaching out to stay connected.
An orderly group of five-year-olds walk into the dining room at Vernon Manor in Viroqua, Wisconsin. The residents are waiting for them. Each child goes up to an elder and introduces him or her self. Then Ingrid Constalie, AD-BC, CDP, Board Certified Activity Director and Certified Dementia Practitioner, talks to the assemblage about the importance of staying fit. The residents nod sagely: many of them are in their eighties and nineties and they exercise every day. But the days that the kindergartners join them are the best, a winning combination or children, exercise, and music.
The residents love teaching the kids the alphabetic movements to the iconic YMCA song. And the kids are a burst of giggles and wiggles as they fold their arms into wings, strut around, and teach everyone The Chicken Dance.
Ingrid’s focus is creating moments of joy, engagement, and connection.
Her intergenerational activities spark the residents and reduce the stigmas of aging and dementia by educating and informing local children, teens, their teachers, and other members of the community.
“This dancing and exercise exchange is simple, energizing, and very successful,” Ingrid says.
Sing-O at Bingo
Music Bingo offers middle schoolers a chance to work with Ingrid’s elders.
“This is about creating a good experience for your partners,” Ingrid coaches the children in advance. “You are their connection to the world.”
Ingrid plays an opening melody, using songs such as “Happy Trails,” “You Are My Sunshine,” and “Singing In the Rain.” Those who know the title shout it out. Often, partners confer with each other. The children help locate the song title on the bingo card and place a poker chip on each answer. Even people living with advanced dementia enjoy listening to music and being around the children.
Most of the time, the school children are chatty and at ease. But one girl was scared coming into the care community.
“I paired her with Helen, a woman deep into dementia,” Ingrid says. “Within minute, Helen had her arm around the girl and they were both laughing.”
Even children who act up at school are wonderfully behaved during the Bingo experience.
Creating Comparisons and Compassion
Recently, Ingrid orchestrated a project with a high school English class. They interviewed residents and did a comparison and a contrast. For example: “While Clara is getting out of bed with the assistance of staff, I am getting ready for school. While she wheels herself down a long hallway to a dining room, I am eating toast with my sister.”
The teenage journalists asked simple questions, like “What is your morning like?” “How do you spend your afternoon?” “How do you like to dress?”
The students wrote up the results and made booklets. One family was so inspired by the insights in the booklet, they later read parts of it at the woman’s funeral.
Ingrid’s intergenerational connections explore understanding, create empathy, and help create exciting new relationships.