Caregiving
Talking about Dementia with Teens
We were delighted to spend time with the bright and curious sixth and seventh graders in Mary Silwance’s class at KC Academy. They had read the young adult novel Hour of the Bees, which features a poignant relationship between a pre-teen girl and her grandfather who is living with dementia, and they wanted to learn more. During our short time together, talking about dementia with teens, we discussed:
- How it might feel for people who are living with dementia
- Stigma and stereotypes
- Creativity and dementia
- Becoming an advocate
Here are a few excerpts from our lively conversation:
How many of you have ever misplaced something? How did you feel when you couldn’t find it?
How many of you have ever forgotten what you were going to say?
Have any of you ever overslept, woken up in a panic, and not known what day it was?
Those kinds of issues happen to most of us, at least occasionally.
But imagine how you would feel if they started happening all the time. You kept misplacing your cell phone, your homework, your library books. You couldn’t remember your address or your teacher’s name. What if you raised your hand to answer a question at school and the words you were going to say just disappeared. Or they came out all jumbled up? What if it happened so often that you started to worry about talking and became more and more quiet?
These are a few of the things that people who are living with dementia have to cope with.
With most illnesses, people cluster around and want to help you. But some people with memory loss actually lose their friends. We know dementia is not contagious, so why would people shy away?
People are scared when their friends and family members start changing. They’re worried they won’t know what to say or how to communicate. They’re worried about making a mistake. But the only mistake is abandoning a person you care about.
Lots of people are working together to make life better for those who are living with dementia. And some are those are people who are living with dementia. They say, “Nothing about us without us,” which means, “Don’t make plans about our lives without consulting us.”
How you can be an advocate
- Watch your language. Don’t use the words victim or sufferer with Alzheimer’s or dementia. These are strong and courageous people dealing with a brain disease.
- Look for opportunities to spend time with people who are living with dementia.
- Don’t worry if you don’t know what to say. Look at the person. If they’re in a wheelchair or chair, bend or kneel so you can have eye contact.
- Try to find a quiet place to talk and listen. Some people are overwhelmed by too much noise.
- Remember to slow down because some people need extra time to answer questions.
- Seek ways to connect through arts and imagination, including music, drawing, cooking, gardening, and flower arranging.
Click here to experience part of the conversation
Click to view informative and inspiring short videos on our YouTube channel
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.
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Animal Magnetism: The Zoo Cafe Attracts Almost 100 People!
The April 16th KC Memory Cafe started out quietly. People came in, silent, perhaps feeling a little confused or weary. After they sat down at comfortable tables and were served comforting snacks, the conversations increased. People enjoyed their oranges, animal crackers, and drinks. And then the dynamic duo from the Kansas City Zoo brought out the first attraction and the crowd got really engaged in the black and bright blue tree frog from South America. They peered through the glass container at the amphibian, tapped the glass to get his attention, and asked questions. The animal magnetism was working. 
With the introduction of the African Pygmy Hedgehog, the guests became even more animated. The hedge hog was undeniably adorable and everyone wanted a good look. “Where is he from?” “What does he eat?” “Will he bite?” people asked. And “Can I have another look at him?”
When the parrot emerged from its covered cage, everyone grinned and clapped. The bird wowed the crowd by saying, “Hello,” clear as could be. When one of the educators passed around brilliantly colored feathers the parrot had shed, people avidly admired them. 
The energy was buzzing as people left, buoyed by learning about these new animals and excited by the outing.
“I will be back,” one woman promised.
“This was so well done,” a staff member told us.
“I loved the parrot,” another woman said.
What we all loved most was seeing our guests blossom and talk and come to life by experiencing such an interactive and engaging program. Many thanks to the Kansas City Zoo for sharing these remarkable educators and animals with us. And many thanks to our guests for attending. We hope to see you all at a future cafes.
Click here and enjoy watching the animal magnetism
Want to experience some animal magnetism at home?
If you have a pet, share the responsibilities of caring for it. Taking care of an animal offers a sense of purpose and invites out our nurturing spirits.
If you don’t have your own pet, invite a well behaved pet to visit. Select an animal you all like, ideally one you can pet and hold, such as a dog, cat, or bunny.
Consider adding a spill-proof aquarium, featuring brightly colored fish. Watching the fish glide by can be soothing.
Look for other opportunities to hold or connect with animals.
Come join us for our next Cafe:
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.
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Coming Together to Ignite Hope: Working with Dr. Chawla in New Delhi, India
Our Uber driver in New Delhi was a turbaned Sikh with a long gray beard. A sign hanging from the rear view mirror proclaimed, “This car respects women.” He deftly drove us through the city, navigating the melee wherein four lanes of cars compete in a two-lane space. Inside the NGO, Hope Ek A.S.H.A., the receptionist led us into Dr. Chawla’s office. Dr. Chawla has a rich voice and a magnetic presence. She is the catalyst for this center for caregivers, creating the service because of her own experience with her mother and Alzheimer’s. We were coming together to ignite hope.
“We know how hard it is for the caregivers,” she says. She and her team help caregivers throughout New Delhi and indeed, throughout the world, educating them, visiting with them and their loved ones who are living with dementia, facilitating support groups, sharing stories and ideas, offering respite and financial support as possible.
For this event, she has gathered a group of doctors, caregivers, support staff, and more. First, some of her team show us activities they do with clients who are living with dementia. These include chanting, deep breathing, gentle stretching, tapping (EFT- Emotional Freedom Techniques), and a lovely heart opening exercise that affirms “We are healthy, we are happy.” They show us painting and games that strengthen memory.
Join us for these interesting exercises:
Then a caregiver from Mumbai Skypes in. Her voice is sad and her face is drawn and pale. She wipes at her eyes as she discusses her issues with her father. Instantly, one of our caregivers steps forward to offer advice. I share ideas with her as well. Then Dr. Sahi, leader of the New Delhi Laughter Academy, guides us in laughter exercises. Within minutes, we are all laughing, even our friend from Mumbai. When the session ends, the worn and weary caregiver has been transformed into an energetic and renewed woman, one who believes there is hope.
That’s is one of the reasons we all came together: our mutual hope and our belief that everyone needs support and a sense of community and purpose.
Experience our New Delhi caregiver’s event by watching this video:
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.
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Rock Around the Library: Celebrating a Year of KC Memory Cafes
No one can sit still. Not when Little Richard, The Archies, or Dion are singing. It’s a Rock Around the Library: Celebrating a Year of the KC Memory Cafes. We are one-year-old this March and we’re celebrating with Musical Bingo by Carrieoke Productions. We’ve enjoyed ice cream and cake and we’re ready to roll, rock and roll, that is.
At the first note, one of our guest says, “Sugar, Sugar.” She’s right and a small group of us sings the literally saccharine 
lyrics, “Sugar, ahh honey, honey, you are my candy girl…”
Within moments, all the care partners are dancing. We’re all helping each other find the songs on our Bingo sheets. We’re singing along when we know the lyrics and humming along when we don’t. We’re laughing.
When Carrie plays the Beach Boys’ tune, I Get Around, one guest says, “I wish I could get around.” Another chimes in, “Me too!”
For an hour, we Twist and Shout, warble Do You Want to Dance?, warn our neighbors not to “step on my Blue Suede Shoes,” and shake our heads over Run Around Sue. Those who win at musical bingo, and there are many of them, get to select a prize. 
“It’s wonderful to see people blooming,” one care professional says.
And it’s equally wonderful to see the caregivers laughing, joking, dancing, encouraging, sharing, and helping us create This Magic Moment.
Click here to join the party:
Don’t miss our Magic Moment in April. The Kansas City Zoo is bringing some exotic and personable animals on April 16th.
Please join us at 10:30 on the lower level of the Plaza Library. Come early. Please share this information with anyone who might benefit.
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.
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Quality Moments in the Land of Dementia: Laughing and Creativity in Jamaica
Our hosts started the program with a beautiful hymn of gratitude, a perfect way to acknowledge the spiritual aspects of connecting and laughing in the land of dementia. We met in the Salvation Army Church and Community Centre in historic downtown Falmouth, Jamaica, with a group of caregivers and community advocates. During our time together, we shared stories, information, laughter exercises, and creative ideas for taking care of ourselves and staying engaged.
For many, this was an introduction to dementia. For others, who were in the midst of caregiving, this was a time of learning and sharing.
Ron and I talked about the importance of accepting each other as we are, no matter what we are going through. We discussed the power of having a purpose and how vital it is for all of us to have meaningful relationships and interesting experiences. .
”When communicating with people who are living with dementia, don’t argue,” Shirley Duncan reminded everyone. “Don’t criticize. Be there to support and appreciate.”
“When we are kind to ourselves, then we are better able to be kind to others,” one of our attendees said.
We discussed Dr. Cameron Camp’s concept of cognitive ramps, offering people the assistance they need 
to remain engaged in the activities they love. Here’s one example from our session: Lorna’s mother was a professional cook, completely at home in the kitchen. As her dementia progressed, she could no longer remember the family’s favorite recipes. But she could sit in the kitchen and enjoy the energy of cooking. And when Lorna’s daughter said, “We are going to make your famous stew. Does it have an onion in it?” the mother smiled and nodded. Ingredient by ingredient, they consulted her, and she smiled and nodded at the mention of the right ingredients. Even though she wasn’t physically creating the meal, she was an integral part of the process.
We talked about the power of music, sharing ideas from Dan Cohen’s Music and Memory program and introduced people to the personal playlist. We had an impromptu Conductorcise session, using Maestro David Dworkin’s aerobic and ground-breaking program, pretending we were conducting a symphony orchestra. We used laughter syllables to make it even more fun and soon everyone was standing up and conducting and laughing.
We shared a story from Karen Stobbe, reminding us all to affirm and appreciate and to use the improv technique, “Yes and…” to ignite and invite conversation.
Throughout our discussion, we wove in laughter exercises.
We enjoyed an imaginary laughter swim. We batted around laughter balloons and cooked up a laughter stew that included fish, pumpkin, garlic, carrots, Irish potatoes and okra.
At the end, we breathed in our gratitudes, closed our eyes and sent our feelings of love, connection, and laughter into the world, hopefully to help and inspire others.
Click here for a small taste of this lively workshop:
A special thanks for the dementia advocates and community volunteers who brought everything together, including Dundeen Ferguson, Shirley Duncan, Sandra Latibeaudiere, Elise Thomas, and Lorna Colley. And thanks to everyone who attended.
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.
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Pick the Best Care Community for Your Loved One
My hands were sweating as Mom, Dad, and I entered the memory care unit. We desperately wanted to pick the best care community for my mother. Pam, the head nurse, rushed towards us, arms outstretched.
“So good to see you again,” she told my father and me. She turned to Mom. “And you must be Frances. Paul has told me so much about you. I hear you’re a nurse too.”
She took Mom’s arm and they walked together down the corridor, talking. We followed and Pam stopped at a small dining area, where coffee and cookies, chocolate chip, one of Mom’s favorites, awaited us. Dad and I looked at each other and smiled. Maybe, just maybe, this was going to be all right.
We had already visited several homes and none of them seemed warm enough, caring enough, or quiet enough for Mom. What had won us over was Pam and her feeling for people who were living with memory loss, her determination to create community, her compassionate and easy way of communicating.
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One of the most challenging experiences caregivers can face is finding the right community when your loved one needs care. Jytte Lokvig, PhD, regularly consults with families on this issue. Her new book, Moving & More, offers families concrete guidelines for finding the facility that meets their needs.
Click here to see our interview with Jytte Lokvig
When visiting a care community, Jytte suggests that we ignore the lobby and the landscaping. A beautiful lobby soothes the family’s soul but has little to do with the quality of care and engagement offered. Spend at least a couple of hours in memory care.
“Remember,” she says, “you are asking your loved one to live here. Stay on after your tour and blend into the scenery, so you can really get a sense of how staff and residents interact.”
Here’s what you want to learn:
- Does the facility practice “Person centered-care?
- Do residents participate in menu and activity choices?
- What is the staff/resident ratio?
- What are the staff retention rates?
- Do all staff receive mandatory first aid and dementia training?
- Are the family, nurse, personal care and activity staff involved in creating the resident’s care plans?
- Does the activities calendar offer a blend of entertainment and interaction?
- Are there both individual, small group, and large group activities?
- Does the staff acknowledge each resident, even with a simple greeting or compliment?
After you have a sense of the community, take your loved one to visit. Have a meal with the residents. Stay for an activity program.
“Several visits like this helps both of you feel more comfortable when the move comes,” Jytte says.
For more tips and information, visit Jytte’s site at http://www.alzheimersatoz.com and consider her book: Moving and More.
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.
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Art Invites Conversation
Teri Miller, with the Alzheimer’s Association Houston & Southeast Texas Chapter, has witnessed the power of how art invites conversation. As the Early Stage Program Manager, Teri collaborates with a variety of Houston’s arts and civic organizations.
“Going to cultural activities offers people a sense of normalcy and gives them a date to put on their calendars,” Teri says. “When they 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.”
Sam is an example of someone who was surprised to enjoy the art gallery.
He attended one of Teri’s early stage support groups. His wife, who cared for him at home, went to the care partner’s group. Teri formed a partnership with the Houston Museum of Fine Arts and invited her early stage group to experience a tour. When he heard the invitation, Sam rolled his eyes and said, “I’ve never been to a museum and I’m not about to start now.”
But the next week, Sam signed up for the tour.
“What made you change your mind?” Teri asked.
“My wife really wanted to go. She does so much for me, I figured I’d do something for her.”
Teri expected Sam to sit back silently, arms folded over his chest, as the docent asked, “What does this painting make you think of? Has anyone ever been in a similar setting?” But to Teri’s surprise, Sam had opinions on each of the three pieces they discussed.
Sam told Teri, “At first, 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.”
He and his wife talked about the experience all the way home. Discussing the paintings 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 MOMA’s Meet Me art program for people living with dementia. The Houston museum benefitted from MOMA coming to train their docents. The program offers comprehensive guidelines for visiting a museum or viewing art at home.
Creative Sparks:
Many art galleries and museums offer special tours and events for people living with dementia. If you’re lucky enough to have such a tour available, take advantage of it.
To design your own museum tour:
- Think of a museum your partner likes. If feasible, buy postcards of some of their art or visit their on-line gallery together and ask your partner which pieces he prefers. That way, you can tailor the visit to his taste.
- Choose one or two rooms that feature his preferred art. Make sure one room has a place to sit.
- Use the paintings and sculptures as a catalyst for conversation. Ask open-ended questions, discussing the colors, people, and objects you both notice.
- If the museum has a restaurant or tearoom, treat yourselves to something delicious.
- Enjoy the sense of connection that comes from discussing art; there are no right or wrong answers, just interesting observations.
- To fashion a viewing experience at home:
- Select art books from the library or use your own personal collection.
- Choose works that portray emotion, tell a story or align with your partner’s background or interests.
- Ask open-ended questions that invite conversation, such as, “What does this make you think of?” and “What do you notice in this picture?” Have fun imagining what the people in the painting are thinking. Imagine their professions and whether they’re happy.
This is an excerpt from Connecting in the Land of Dementia: Creative Activities to Explore Together. Deborah also wrote Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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KC Memory Cafe: The Goat and Pony Show
One of the stars of November’s KC Memory Cafe was a miniature horse. It’s not every day that a white horse and a couple of black goats visit the Plaza Library, accompanied by exotic bunnies and silky chickens. But these friendly animals, brought to us by the Paramount Petting Zoo, captivated all our attendees.
“These animals love to be held and petted,” their keepers told us. They instantly snuggled into people’s arms and were in no hurry to leave. Our attendees were filled with a magical sense of connection and relaxation, mixed in with the thrill of meeting all these new animals.
“Animals fill us with excitement, and give us something to talk about,” says Mandy Shoemaker, co-founder of Prairie Elder Care. Mandy’s organization is part of the esteemed Eden Alternative, a national movement dedicated to reducing loneliness, helplessness, and boredom through loving companionship and meaningful engagement.
“Animals give us a connection,” she says.
We could see and feel that connection as we all enjoyed feeding the goats, petting the horse, and cuddling with the bunnies and the chickens. We also shared farm memories and Mandy asked, “How many of you ever thought you’d be holding a chicken in your lap?”
For most, it was a unique experience, one they did not tire of. For some, 
parting with their loving chicken or bunny was like saying good-bye to a dear friend.
To meet the animals, click here.
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.
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Eight Steps to Help People Living with Dementia Feel at Ease during Holiday Gatherings
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 the tips via email and had such a great response we also want to share them with you.
Several people wrote, “These ideas 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 Living with Dementia Feel at Ease during Holiday Gatherings
- When you’re in a group, help the person living 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 is living with 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 season filled with grace, gratitude and generosity.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Celebrating Great Connectors Throughout the Dementia Journey: Music, Nature, and Laughter
When care partners gather and trade stories and ideas, there’s usually magic afoot. We felt that magic when we met with a group of family and professional care partners to celebrate great connectors throughout the dementia journey. We presented engaging ideas using music, nature, laughter and more.
Lisa Vetter, Director of Healthcare Sales & Marketing, Santa Marta Senior Living Community, invited us to speak at an event announcing the community’s new care partner support group. The group is led by Jennifer Walker, RN, BSN, Clinical Community Liaison, Kansas City Hospice & Palliative Care. Jennifer also facilitates the KC Memory Cafe and she is compassionate, informed, and smart. Most importantly, she has a fantastic sense of humor.
Ron and I shared ways to stay connected through singing and music, looking at works of art together, bringing nature indoors, and laughing. And our audience shared their experiences as well.
Here’s a story about nature that inspired us.
Marcie took her mom, who was living with dementia, on a fascinating monthly outing: they drove out into the country to look at the full moon. Her mother didn’t talk much anymore, but she loved seeing the night sky and gazing at the magnificent moon. One evening, as the moonlight spread over the car, Mom began singing, When the moon comes over the mountain. Marcie had never heard the song before and her eyes filled with tears at hearing her mom sing so strongly and clearly.
Here’s a story about the power of familiar music. Karen’s mom was a devout Catholic, living with dementia. Though there were many things she didn’t remember, including her daughter’s name, when she attended Sunday mass, she melodically sang every word of every hymn.
We loved sharing with this group of dedicated and compassionate care partners, who were all seeking ways to stay connected.
Here’s an extra tip from Connecting in the Land of Dementia: When you want to boost energy and lift spirits, add a splash of laughter into your life. Look at a clock and say, “We’re going to laugh for 30 seconds,” and start ha ha ha-ing. Or pretend you’re talking on the phone and hearing a hilarious joke. Or warble out the Ha Ha Chorus by singing the Happy Birthday song in “ha ha ha” syllables.
