Art is the only way to run away without leaving home. ~Twyla Tharp
Reverend Katie Norris knows firsthand the power of a welcoming environment. She has learning disabilities and works better in a room free of distractions. When her mom, Carolyn Farrell, was diagnosed with dementia, Katie turned to art as a way to deepen their connection. Her art projects were so satisfying that she wrote a book, Creative Connections in Dementia Care, offering simple and meaningful ideas for engaging through the arts.
Katie grew up going to Montessori schools where everything had a place and the work area was clean. She flourished in that environment and realized her mom would flourish as well.
Creating note cards is one of Katie’s favorite projects, since they are fun and easy, and result in a tangible, useful gift. If you have time, you can make a card in advance, so you’ll have an example to share. This is a relaxing activity for people of all abilities and does not require an artistic temperament. The complete recipe for notecards is in Katie’s book.
- To begin, set out the materials.
- Fold paper into the desired size. Or you can buy blank cards and envelopes at a hobby store.
- Decide if you each want to make your own cards. Or you can work together.
- Use paints or colors to create a free form design. If you’re working with someone who likes more structure, draw some bright lines on the card to form a simple design. They can then paint within and around the design or highlight the picture by outlining it with buttons, glitter, stickers, or paint. Demonstrate the options and leave plenty of space for creative unfolding.
- Extras include painting the background of the card with a little paint roller, called a brayer brush, adding design with sponge daubers, or gluing on pictures gleaned from old magazines and cards.
- People also enjoy decorating the envelope.
The notecards have a variety of uses, depending on the desires of the person living with dementia. You can donate them to churches or children’s hospitals, give them to friends and family, or frame the finished product for display. Or you can send your own notes on it.
“This project works well with an intergenerational group,” Katie says. “We involved our faith community, by asking them to host a button drive for us. That gave us a chance to share the finished products with them.”
Sharing this art helps people understand the vast creativity of those living with dementia.
For more information about Katie and her book, visit www.RevKatieNorris.com
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
“Dementia has brought me back to who I was to begin with. I’m more self confident in myself. I feel an intensity in the moment that I didn’t have before.” Richard Taylor, PhD.
Before he was diagnosed with dementia, Richard was a professor of psychology. At age 62, he was a popular lecturer, witty, well read, with an easy manner and a welcoming charm. But when he was diagnosed with dementia, Richard lost his professional standing, his job, his driver’s license, his confidence, and his optimism. He found himself crying ceaselessly, not really understanding why.
“I didn’t even know anything about dementia,” Richard says. “I had fears about losing control of myself. I thought the transition from one stage to another was abrupt, that a curtain would drop and suddenly I wouldn’t know the world and the world wouldn’t know me.”
To stem these fears, Richard began to write daily, capturing these thoughts and activities: he was, after all, a psychologist and used to analyzing things. Every morning, he read his previous day’s writings.
After he had accumulated a year’s worth of writing, he read some excerpts to the members of his Early Onset support group.
His group identified with his fears and feelings and urged him to take his pages down to the caregiver’s support room and slide them under the door. Richard did.
After both meetings ended, some of the care partners sought out Richard to thank him for sharing his feelings and insights. Months later, someone from Health Professionals Press called and asked if they could publish Richard’s writings. His book was titled Alzheimer’s from the Inside Out.
Turning into an Advocate and Speaker
He was invited to read parts of the book.
“My introductions to my readings got longer and longer,” Richard says. “I wanted to share my dementia story, so I talked about my life and what it felt like. I’ve always felt people with dementia are the only true experts on the subject. You can imagine you’re blind, but you can’t imagine you have dementia. Dementia is so individualized as to how each person expresses it. Our brains each have different strategies.”
Soon people were paying Richard to share his insights at conferences and conventions and his speaking career began.
He starts his presentations by saying, “My name is Richard and I am living with the symptoms of dementia.”
But Richard didn’t confine his advocacy to speaking. He also worked with the Houston Art Museum and the Metropolitan Museum of Modern Art to bring an art program for people with dementia to the gallery. Richard traveled to MOMA, learned about the program, worked with the Houston docents, and was a catalyst for bringing the program to the Houston community.
Understanding the Loss and Lack of Meaning
Imagine losing your job, your car and your sense of passion and purpose. You feel you’ll never again do the activities you love, make new friends or try new hobbies. Your life is static and boring and you feel out of place and alienated, even in your own home.
Richard believes many with dementia prematurely talk themselves into a wheelchair and into not communicating. They give up. He understands the loneliness and despair that can overtake someone living with dementia.
“Strangers start hugging and kissing you and talk louder to you and never ask for your opinion and are more effusive in their positive emotions with you. After a while, you just go along. So when people say, ‘How are you doing honey?’ I say, ‘I’m doing fine.’”
Reigniting His Purpose
Richard hopes his personal stories will inspire care partners to look for opportunities to bring more joy, connection, and satisfaction into life. He understands how important it is to feel a sense of purpose. As a debater, a professor, and a raconteur, Richard has always defined himself through his speaking and writing.
“Through my speaking and advocacy, I have reignited my sense of meaning,” Richard says. “People clap when I talk and this reassures me.”
Part of Richard’s purpose is helping care partners see their loved ones as whole and complete. He writes, “Just because my memory sometimes fails me, just because my cognitive abilities seem to slip…please know that in my own heart and mind, I am still me. I am not becoming any less a person simply because I cannot remember like you, talk like you do, or think as you do. I am still Grandpa, and Dad, a friend.”
Richard believes, “Dementia is about living a purposeful and purpose-filled life, not dying from its causes.”
When talking with someone who has dementia, Richard has this advice:
- When greeting someone who has dementia, say, “Hello, it’s me, Deborah.” Then pause, allowing time for a response.
- If you don’t know how to act or what to say when you’re visiting a friend with dementia, try to learn more about what your friend is experiencing. You might ask, “What have you learned from living with dementia?” Or, “What changes are you having to cope with?” Or, “How can I make our time together more meaningful?
- See the person as a whole human being.
- Look for opportunities to add autonomy, purpose, and adventure to the person’s life.
Thanks to Lori La Bey for sharing my article about Richard with her readers.
Please visit her site https://www.alzheimersspeaks.com
for more information about Richard, including an interview with Lori.
Lori’s site, blog, and radio program feature inspiring people who are working for and with those living with dementia.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
For Deb Campbell, Executive Director, Kansas City Senior Theatre, the playwriting process starts with deep listening. When she decided to create a play about dementia for the Kansas City Fringe Festival, she turned to her colleague and friend, Johnna Lowther, for inspiration and support. Together they began a creative exploration by gathering groups of care partners and people with dementia. Deb designed group activities to get everyone connected to each other and to the topic.
Ron and I were honored to participate in one of Deb’s listening groups.
“Choose a word,” she tells us and we select a word from a tumble on the table. Then she asks each person to add their word onto a magnetic board and tell us why they picked it.
One man chooses “apparatus.” He explains, “I’ve worked with tools most of my life. Since the Alzheimer’s, I can’t trust myself. I’ve put the tools away.”
One man selected ‘gorgeous’. “My wife, Annie, loved that word. She described everything as gorgeous, her engagement ring, flowers, a teacup, a bedspread. Everything was gorgeous to Annie. She was gorgeous to me.”
The stories around the words have us leaning forward in our chairs. Deb draws us further into our own stories. She asks us to select from a pile of masks, then invites us to put on the mask and speak.
“Don’t forget the real me,” one person says.
“I’m not trying to hide,” says another.
We all have a turn holding a steering wheel.
“If you were driving this play, where would you take it?” Deb asks.
“In reverse,” a woman says. “I feel like that’s the direction I’m going.”
“My wife keeps getting lost,” a man says. “I now have to take the wheel.”
After the listening sessions, Deb reaches out to people to see if they’d like to share additional stories. She then meets them at their homes to record what they have to share. The stories are transcribed exactly as they are told.
“I’ve learned I can’t hurry the process,” she says. “I just let the stories flow in.
Once Deb has collected all the stories, she begins to hone in on the play.
“I become obsessed,” she says. “I devour the material, slosh around in it, and immerse myself. I feel overwhelmed, yet I trust the process.”
She plans to let the play unfold organically. Her job is helping people reveal their experiences. She won’t shape the drama until the theme emerges from her collection of powerful personal stories.
Originally, she used an image of her mother-in-law’s gnarled hand holding onto her baby grandson’s hands. She thought the play’s theme would be “Hold On.” But as she listened to stories and collaborated with Johnna, she realized the play is about accepting the present instead of holding on to the past. An image of building blocks burst into her mind. Those blocks, once again marked with words, now anchor the play, which is titled, Seven Stages, Seven Stories.
The play will debut July 18 at 7:30 during the KC Fringe Festival and will play several times during the festival. The cast is a mixture of people with early onset dementia, care partners, storytellers, and experienced actors.
Ideally, audiences will be inspired by the depth and complexities of the people who are living with this disease and by the love and connections inherent in the journey.
Treat yourself to a meaningful theater experience. Come to Phosphor Studio 1730 Broadway Blvd. (across the street and south of Kauffman Center).
Saturday, July 18th 7:30
Tuesday, July 21st 6:00
Thursday July 23rd 6:00
Saturday, July 25th 4:30
Visit the Fringe website to get tickets and for any changes in scheduling: www.KCFringe.org
Visit Kansas City Senior Theater for more about Debra’s work:
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Art shows that what people have in common is more urgent than what differentiates them. – John Berger
Teri Miller, with the Alzheimer’s Association Houston & Southeast Texas Chapter, has witnessed the power of creativity and the arts. As the Early Stage Program Manager, Teri collaborates with Houston arts and civic organizations and encourages people living with dementia to attend the events, which have included viewing art, doing photography workshops, creating poetry, and spending time in nature.
“Attending these activities offers people a sense of normalcy and gives them something to put on their calendars,” she says. “When they attend with friends or care partners, they have a shared experience to discuss and they also have ‘news’ to share with friends and visitors. Even people who say, ‘Oh, I don’t care for museums,’ usually have a great time.”
Sam is just one example. He grew up in a small Texas town and has been attending one of Teri’s early stage support groups. His wife, who cares for him at home, attends a care partner’s group. When Teri formed a partnership with the Houston Museum of Fine Arts, she invited her early stage group to attend an arts tour with their care partners.
When Sam heard the invitation, he rolled his eyes and said, “I’ve never been to a museum and I’m not about to start up now.”
But the next week, Sam was there, signed up for the tour.
“I’m glad you’re here,” Teri told him. “What made you change your mind?”
“Well, my wife really wanted to go. She does so much for me and I figured I’d like to do something for her.”
Teri expected Sam to sit back silently, arms folded over his chest, when the docent asked, “What does this painting make you think of? Has anyone ever been in a similar setting?” To Teri’s surprise, Sam had opinions on each of the three pieces they discussed.
Sam’s wife smiled as Sam told Teri, “Originally, I didn’t want to go because I was worried I wouldn’t have anything meaningful to contribute. But I guess you don’t have to know anything about art to enjoy the museum.”
Sam and his wife discussed the experience all the way home, adding a new topic to their usual conversations. Discussing the art opened up chances to reminisce and connect. Plus the experience gave them something interesting to share with their grown children and visiting neighbors.
Like many art partnerships around the country, Teri was inspired by Meet Me, the MoMA’s Alzheimer’s Project for people living with dementia. Houston benefitted from MoMA coming to train their docents. The program offers comprehensive guidelines for visiting a museum or viewing art at home.
For more about Houston’s art viewing program, visit
Twenty years ago, Jytte Fogh Lokvig found herself in a quandary. She was doing a favor for a friend: visiting the friend’s mom weekly while the friend was out of the country for three months. The mom lived in a care facility and the first visit went wonderfully. But the second visit was shocking to Jytte.
“Her mom started screaming and cursing,” Jytte says. “I went to the nurses’ station to figure out what was wrong. The nurse told me she had Alzheimer’s.”
Jytte, who had experience in art and working with at-risk youth, knew nothing about dementia. But she started to learn. Using principles she’d employed with youth, she began offering additional activities at the facility.
“I didn’t view people with dementia as sick,” she says. “Everything I planned was directed at the well part of the person.”
She looked for activities that were collaborative rather than competitive, so everyone could bloom with a feeling of accomplishment.
“I started with a group collage,” she says. “That way, we were all working together.”
Through the process of creating collectively, people relaxed and became comfortable with the materials. This experience was so fulfilling and moving that Jytte began working with families, guiding them in doing projects together.
Jytte suggests collages because they are easy and there is no right or wrong with collage.
“Collect old magazines, buy a few glue sticks, and break down big boxes to use for cardboard,” she suggests. “Engagement and conversation are the important things; if it never gets beyond discussing a picture of daisies that reminds her of her growing up garden, that’s fine.”
Jytte believes the keys to engagement include giving people enough time, letting them work at their own pace, and offering them consistent opportunities for self-expression.
When possible, invite others to join you for the collage experience. Introduce the project by asking the person with dementia for help, saying, “Hey Mom, I really want to do this project. Want to help me?”
If Mom is reluctant, start the project and mention; “I sure could use your help if you don’t have anything else to do.”
Tear pictures out of colorful magazines.
Let Mom direct the artistic action.
Use the pictures to trigger conversation.
Enjoy the process and don’t worry about a finished product.
Jytte Fogh Lokvig, PhD, is the author of The Alzheimer’s Creativity Project and Alzheimer’s A to Z, Secrets to Successful Caregiving. She is also a founder of the Alzheimer’s Café.
Mountains cannot be surmounted except by winding paths. — Johann Wolfgang Von Goethe
How do we appreciate our lives as a care partner when we’re worn, torn and forlorn? How do we feel our creative spark when we don’t have time or energy for our usual forms of renewal?
I recently had the pleasure of interviewing some leading creative caregivers for an article on Conscious Caregiving for Natural Awakenings. Click here to read this article.
I’ve also found inspiration on the blog Zenhabits.net, where Leo Babauta offers great ideas for making the most of life. Leo generously shares his wisdom with anyone who wants to learn from and with him. Here are two of my favorite shots of his inspiration.
Treat an activity like a sacred ritual
Every single thing we do can be done as an afterthought, or it can be elevated to something sacred.
Washing your hands? Take a moment to realize how much of a miracle this act is (many people don’t have water for basic hygiene), take a breath, and truly pay attention as you go through this sacred hand-washing ritual.
Do your dishes the same way: every dish a miracle, every sensation elevated to a new importance, every drop of water a gem worth paying attention to.
This applies to every activity: caregiving, writing, responding to an email, listening to a friend, playing with your child, taking a shower, going for a walk, paying bills. Worthy of your full attention, worthy of joy and appreciation.
Your Intention Creates Your Greatness
Start by admitting that greatness comes from making a difference in the world.
Being an example of compassion is one way you can make a difference.
It doesn’t matter if you achieve the result you set out to achieve — you can’t control the result, but you can control your intention. And you can show up, every day with that intention.
Carve out the time. Put aside everything else. Realize that life is limited and precious and amazing, and you shouldn’t waste a minute of it.
Pursue this compassionate work with single-minded devotion. This one thing matters, and all else can be put aside for now, unless it’s in support of your work. (Good health supports your work, including a whole-foods diet, exercise, and sleep.)
This compassionate work, with good-hearted intention, pursued with single-minded devotion: this is greatness.
Here’s to all those sacred acts of daily caring and to the intentional and loving care partners, bringing greatness into the lives of those living with dementia.
“Art has the power to transform, to illuminate, to educate, inspire and motivate.” Harvey Fierstein
For Mary, the brief journey from her mother’s bedroom to the Memory Unit’s community area seemed endless.
“Where are we going?” her mother, Irene, asked. “I don’t want to go. I am so confused. Where are we going? I don’t want to go.”
“We’re going to look at art, Mom,” Mary said. “It’ll be fun.”
When Mary finally got her mom settled into a chair, her mother seemed to collapse inward. Irene’s head bent; her back hunched. She cocooned into herself and seemed oblivious of the other people in the circle. Even though Irene had formerly loved going to galleries and museums, she didn’t stir when the facilitator asked, “How many of you enjoy looking at art?”
Then the facilitator came right over to Irene, gently got her attention and showed her a Norman Rockwell print that featured a young boy and a dog.
Irene stared at the picture.
“What do you see?” asked the facilitator.
“I had a dog,” Irene said. “Peaches.”
“Tell us about Peaches,” the facilitator said.
“She loved to catch balls,” Irene said. “She slept with me.”
“I had a dog named Happy,” said another woman.
“My brother had a spaniel,” said a man.
“Peaches was a terrier,” Irene said.
Mary took a deep breath and smiled as her mother talked about her dog and interacted with the others. The art had invited Irene out and Irene’s conversation had invited the others out.
“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.The ARTZ (Artists for Alzheimer’s) program, was founded by Dr. John Zeisel and Sean Caulfield, MEd.
“When commenting on art, there are no right or wrong answers,” Susan says. “People are enlivened, realizing they still have ideas to contribute.”
Prior to a museum visit, an ARTZ facilitator brings photos of familiar works of art to a care facility, noticing which photos evoke memories, emotions and conversation. The facilitator then tailors a museum visit to feature similar art.
Even galleries without a special ARTZ program can tailor visits for those who have dementia.
To create an ARTZ experience at home, choose art that:
- Speaks to the individual’s background or interests.
- Tells a story, such as Norman Rockwell prints about families and familiar situations.
- Features animals that the loved one likes.
Select art books from the library or use your own personal collection. For individuals deep into dementia, bright colors and abstract art are often appealing.
To create your own museum tour:
- If possible, ask a docent for a special guided tour.
- Choose one or two rooms that feature art appealing to your loved one.
- Choose at least one room that has a place to sit and look at the art.
- Move slowly and take your time looking at the art. Use the art as a catalyst for conversation.
A portion of this article first appeared in Natural Awakenings.
“Where words fail, music speaks”
Hans Christian Andersen
We invite you to experience an uplifting cinematic exploration of music and the mind. Alive Inside’s inspirational and emotional story left audiences humming, clapping and cheering at the 2014 Sundance Film Festival, where it won the Audience Award.
If you are not in Kansas City, Click here to look for this film in your city.
If you’re in Kansas City, please join us on Friday evening, August 15th at 7:00 at the Tivoli Theater for the premiere of Alive Inside: A Story of Music and Memory.
Alive Inside follows social worker Dan Cohen as he fights a broken healthcare system to return a deep sense of life to those living with memory loss.
Filmmaker Michael Rossato-Bennett chronicles the astonishing experiences of individuals around the country who have been revitalized through the simple experience of listening to favorite music. He reveals the uniquely human connection we find in music and how its healing power can triumph where prescription medication falls short.
The film features illuminating interviews with experts including renowned neurologist and best-selling author Oliver Sacks (Musicophilia: Tales of Music and the Brain) and musician Bobby McFerrin (“Don’t Worry, Be Happy”).
Invite Music & Memory into Your Life
“Music is an outburst of the soul.”
Dan Cohen’s Music & Memory program has a simple yet profound tenet: Figure out what music people love and let them listen to it.
This involves creating a personal playlist. Ideally, each song evokes an interesting and positive memory.
Here’s a song from my playlist:
I am pushing my cart through the neighborhood grocery store when the background music permeates my thoughts. The strains of Summer Place transport me to my growing up home in Memphis, Tenn. I see myself, age 12, sitting at my beat-up old upright piano, clunkily accompanying myself as I sing. My mother is perched on the piano bench, singing along. “There’s a summer place,” we croon. We do not have great voices but we sound good together. “Where I’ll be safe and warm.” The song offers a moment of respite during a period when Mom and I are not getting along well. Singing together makes us smile and laugh. And now, in the grocery store, in front of the heirloom tomatoes, I smile as the song envelopes me once again, connecting me with my mother, my childhood home, and that piano I earned by doing chores (including picking bag worms off our neighbor’s bushes for a penny a worm.)
What about you? What are the songs that weave through your heart and into your memory?
“Music is the language of the spirit. It opens the secret of life bringing peace, abolishing strife.” — Khalil Gibran
“Caring for my mother is teaching me to let go of perfectionism and be in the flow,” a friend recently told me. Learning to occasionally surrender control and move with the flow has been one of the gifts caregiving brought me. Here’s a story I wrote about the art-form of surrender, an art-form I’m still working on.
Waving the White Flag
First, I lost the freelance job that would have supported me for the next two months. Then I discovered I needed outpatient surgery only minimally covered by my insurance. Next, a torrential downpour made archipelagos of my basement furniture. Instead of spending the evening creating a stunning new resume, I was duct taping trash sacks to the dribbling basement walls and sopping up the puddles with towels. I started upstairs to search for more trash sacks and tripped over a stray board, left over from the rascals who water proofed my basement! I picked up the board and was instantly stabbed with a splinter. Grabbing a sodden white towel to stem, I stomped up the stairs.
“I give up,” I said to the dirty dishes in the kitchen sink. “I can’t take anymore,” I said to the pile of unopened bills cluttering the kitchen table. I shook the white towel and water flew across the counter tops. Then I remembered the old westerns, when the bullet-riddled good guys tie a handkerchief on a rifle butt and waved it at the enemy, just to get a moment’s respite.
It was time for me to officially throw in my towel.
I went outside and tied the towel to the board. I walked into the yard and waved my flag at the sky and said, “I surrender.” It was a good thing too, because I suddenly realized I was ankle deep in water. And I was wearing my good shoes.
I leaned the flag against the porch and dragged myself up to bed.
The next morning, the beat-up-looking flag made me smile. I felt better now that I had officially let go of control. Every time I came in and out of the house, I saw the flag. Despite that constant reminder, I still struggled. Sure, my basement dried up and yes, I got a new client. But I felt “on the edge” rather than brimming with abundance .
“Will you make a white flag for me for my birthday?” I asked my daughter Sarah.
As soon as I spoke those words, I worried: What if I don’t like the way the flag looks? What if it simply isn’t what I envisioned? What if it’s too large or too small? Then I had to laugh at myself: I wanted control over everything, even the shape of my surrender!
The morning of my birthday, Sarah put a long pole in my hands. It was spray painted gold, with an elegant carved top and held a beautifully proportioned, dazzling white flag. The flag was aesthetic, dramatic and elegant. Slowly I walked outside and hung the flag near my porch light, where it was fully visible yet sheltered from the rain. The flag tilted a little to the right. I climbed onto a chair to straighten it and by the time I climbed down, it tilted again. I tried again, perfect, and yet, the moment I stepped off the chair, the flag became askew.
Then I realized, the flag was already working, reminding me to flow with imperfection, to enjoy what was offered. I saluted my crooked flag and went inside to make a birthday wish.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. For a signed copy, contact Rainy Day books: 913-384-3126
As we move into the holiday season, Ron and I think often of our parents who went through their last holidays with dementia: my mom Frances and his father Frank. We wanted to share the season with them in ways that felt safe, comfortable, and honoring so we gradually developed these tips. Recently, we shared them via email and had such a great response we also want to share them with you.
Several people wrote, “These tips are good for anyone, not just those with memory loss.”
What great wisdom–to treat each person with the tenderness and consideration that we often reserve for someone going through a physical or emotional illness.
We’d like to share our tips and we’d like to learn from you: what other suggestions do you have for helping people feel connected at gatherings?
Eight Steps to Help People with Dementia Feel at Ease during Holiday Gatherings
- When you’re in a group, help the person with dementia feel safe and comfortable by having a trusted friend or family member stay beside him or her, explaining the proceedings and fielding questions from others, as needed.
- Encourage people to say their name and maintain eye contact when conversing with the person who has dementia.
- Make sure the person can come and go from the group as needed. Create a quiet space where he or she can rest — or appoint a caring person to drive your loved one home when he tires of the festivities.
- Have something special for them to look at, like a family photo album or a favorite magazine.
- Choose background music that is familiar to them, music of their era played in a style they resonate with.
- Prepare a few of their favorite foods.
- When talking to them, don’t correct or contradict or try to pull them into the current reality. Simply listen carefully and let them talk.
- Appreciate them for who they are right now.
Here’s to a holiday seasons filled with grace, gratitude and generosity.