Connecting in the Land of Dementia. Deborah Shouse
a memory care facility changed both his career path and his life. He grew fascinated by the openness, sensitivity, and creativity of those living with memory loss and began studying neuroscience.
“Our basic instincts include discovery and invention, and thus creativity,” John says. “These abilities are hard-wired, and people living with dementia can still draw on these skills. They are often exceptionally perceptive, increasingly creative, and have high emotional intelligence. It’s our job to uncover and embrace their abilities so they maintain dignity, independence, and self-respect.”
Many care partners struggle through a period of grief, helplessness, and anger when a loved one receives a dementia diagnosis. But if care partners and families can move from despair into hopefulness, they can access their natural curiosity. Hope, to John, means knowing that we can make a difference in the person’s life. With hope, we all become creative and wonder, What is going on and how can I make a difference?
John, the author of I’m Still Here: A New Philosophy of Alzheimer’s Care, often facilitates conversations about the “gifts” in the care partnering experience. He suggests a family, along with significant friends, get together and ask the person living with dementia, “How can I make a difference for you? What can I do to make things a little bit better?”
Once all have responded to this request, they can all then discuss, “How can we support and help each other as a group?” John calls this a Circle of Hope.
“Every family member and friend can make a difference in the life of the person living with dementia,” John says.
Focus on Personal Preferences
Focusing on your partner’s passions helps you select and adapt meaningful projects. Jackie Pinkowitz is a pioneer in the international Person-Centered Living movement (PCL), which sees people as whole, regardless of disabilities, including dementia. According to PCL, all people with disabilities are entitled to choice, privacy, respect, and autonomy. Any assistance they need should be centered on their personal preferences and values.
Focusing on your partner’s passions helps you select and adapt meaningful projects.
“Ultimately, this philosophy means being kind and sensitive and honoring people’s right to make their own choices,” Jackie says. “With this attitude of openness, you can help people live fully with dementia, enriching their lives with meaning, community engagement, and social relationships.”
Issue the Invitation
As an artist, Sarah Zoutewelle-Morris was excited about her new job as an activities director in the Netherlands. Previously, she had been part of a performing troupe that staged artistic events in healthcare institutions. She was used to instantly connecting and making people smile. But in the care setting, when she took out her art supplies and invited people to join, the residents backed away, saying, “That’s for kids,” or “I don’t want to do that.”
“I learned I couldn’t confront people with creativity too soon,” she says. “I couldn’t go in as the artist; I had to figure out ways to invite people into a project.”
In South Dakota, Ari Albright, an artist in residence in a dementia unit, has had similar experiences.
“If I said, ‘Hey, want to make art?’ people shied away, saying, ‘I can’t draw, I can’t paint. I don’t know what to do,’” Ari says.
But if Ari asked, “Do you have a moment to help me?” or “Would you give me a hand?” people were interested in assisting.
“It’s all about issuing the right kind of invitation,” Ari says.
Offer Choices and Encourage Ideas
Whenever possible offer two or three choices. “Shall we start with the blue, red, or green paint?” “Shall we listen to ‘Blue Moon’ or ‘Fly Me to the Moon’?”
Slow down and allow time for your partner to process. “Before you help, let the person tussle with the task a bit,” Ari suggests.
Encourage whatever ideas come up.
“The least intrusive way to communicate is by signaling someone with a gesture or expression,” Ari says. “When you need to speak, gently repeat words as often as necessary. Or you can show by example, placing the person’s hand over your hand as you draw, paint, or put something together.”
Give people notice as you’re winding down the project. Thank them for their help and offer a low-key transition, such as “I’m putting away these materials now. It’s time to clean up the table and get ready for dinner. Will you join me?”
Say Yes and Create a Failure-Free Zone
“That’s salad dressing, not milk. Don’t drink that.”
“No, we’re not going to see Sissy today; we’re seeing her next month.”
“Watch out for that pen; you’re getting ink all over your shirt.”
What if you were constantly being told no and assured you were mistaken, clumsy, or wrong? Care partners have the difficult balancing act of keeping people safe while nurturing their self-esteem and independence.
With activities, you can invite unfettered self-expression by suspending judgment and saying yes to ideas.
Imagine knowing what you want to do and not being able to communicate your wishes. For example, Emily wants to step outside to look at the roses, but the words are stuck in her throat. So she walks down the hall to the outside door. A woman steps into her path. The woman’s smile is too big, and her voice is too high.
“Where are you going?” she asks.
Emily gestures toward the door but the woman shakes her head.
“No, you can’t go home,” she says. “But you can go to Bingo. Come back this way with me.”
The woman doesn’t understand, but Emily cannot explain herself. “The roses,” Emily wants to tell her, “I want to smell and touch them. They’re just like the ones I used to grow at home.”
Teepa Snow, an occupational therapist who teaches dementia care across the nation, understands how frustrated Emily is feeling. For years, she has worked with people who have trouble using words to communicate. She knows that the tone of voice matters and authenticity is key.
“I imagine how I would feel if I couldn’t express my needs and someone was telling me, ‘No, no, no,’” Teepa says.
With activities, you can invite unfettered self-expression by suspending judgment and saying yes to ideas. This removes the risk of embarrassment, reduces the fear of making a mistake, and helps your partner feel creative, capable, and loved.
Redefine Being Helpful
Teepa has also seen well-meaning caregivers be too helpful. That’s what happened to George.
George loves jigsaw puzzles, but no matter how hard he tries, the pieces simply won’t fit together.
“Don’t worry, Dad,” says that nice woman who takes care of him. “I’ll help you.”
She quickly fits a whole section together. George knew he was getting dumber, and this proves it. Why should he even bother to do another puzzle? He’d like to have just a little assistance, but the words won’t fit together so he can let that nice woman know.
“We need to redefine what it means to be helpful,” Teepa says. “Instead of doing something for people, we can offer choices. This increases their sense of independence and control.”
If someone is struggling to find a missing puzzle piece, put your hand under hers and guide her to two pieces, then together experiment to see which one will fit. By collaborating, you’re supporting and empowering the person living with dementia.
Go with the Flow
Perhaps you’ve experienced something like this: You’ve