Betty* stares out her window, watching the squirrels play. She’s still smiling as she turns to me to ask: “Do you think my daughter will come today?”
I take a deep breath and reach for her hand. She squeezes my gloved fingers. I explain — her daughter wants to visit but can’t because of COVID precautions. She nods, sadly. “Oh yes, that’s right. I forgot.”
It’s an exchange we’ve already had many times. Betty suffers from dementia, and it impacts her brain’s ability to make and store new memories.
For the past two years, Betty’s been a resident in the skilled nursing facility I serve as speech-language pathologist. I’m honored to provide some support for her.
I call her daughter, Joanne, regularly with updates. She feels helpless. I remind her she is helping — she gives us important tips about Betty’s likes, dislikes, and preferences. Often, people with dementia have difficulty voicing their needs — we rely on information from their loved ones, whether near or far, to support their quality of life.
It can be as simple as a hot cup of coffee from McDonald’s, a favorite blanket, a sunny spot to sit in, a favorite program on television, or a preferred magazine. I love to sing with and for residents, or to play their favorite songs. For residents who are religious, I offer to read their favorite Bible passages and psalms. I can build these into our therapy sessions.
Information about dislikes is powerful, too. If a resident hates chicken, I will work with the kitchen staff to make sure they have alternative options.
One patient refused to eat, but her daughters told me she used to love mashed potatoes. So, I made sure she got them at every lunch and dinner. She began to eat again — at first just the mashed potatoes, but soon, her appetite returned. She began ordering meat with her potatoes. She gained weight and energy.
I love nothing more than an involved, caring family in the mix. Families offer us a lifeline, which we use to inform and guide our treatments. Some families even provide information in written form. This can be included in a resident’s medical chart. Family members can meet therapists halfway by understanding that we see many patients each workday, all of whom have needs, and be respectful of our time when they reach out.
Music is a wonderful example of how we use this information. I began treating a 90-year-old woman, who appeared quite frail and hadn’t spoken a word since her arrival. I called her daughter, and we had a lovely chat, during which she shared that her mother loved opera and used to be a singer. “Her favorite song is Ave Maria,” she told me. “I hope it helps. I just love and miss her so much.”
Our next session, I came prepared with Ave Maria cued up on my phone. Not long after the music swelled and the vocals began, her eyes focused on me. She smiled. Her hands began moving along to the rhythm. And then, she began to sing along. She had a beautiful lyric soprano voice and knew all the words.
She began talking, eating, and singing again. Without this information, I never would have known what truly mattered to the beautiful, talented, woman I came to know.
When I was little, my mom would take me to our local nursing home. She’d bring her guitar and we’d play and sing. Those encounters touched me deeply. I’m reminded of that now — how a little love and kindness can go a long way.
As a therapist, I know patients have better outcomes when their family and loved ones are involved in their care.
But, unlike me, many caregivers don’t choose the role. Many have little to no training when they’re thrust into it.
There’s so much I wish I could tell them.
I’d encourage caregivers to promote a person’s ability to perform a task with modified independence. For example, when a family member insists on feeding a person who is able to feed themselves, in the name of helping — what they’re really doing is taking away a piece of that person’s independence. It sounds harsh, but it’s true. Instead, I might offer hand-over-hand feeding. We may offer liquids in an adaptive cup to reduce spilling or increase swallow safety and control. Sometimes, even giving a person their foods in separate bowls can improve their attention. A resident may eat more when they are in a social setting or may find this too distracting. We use our best judgment, and we adjust as needed.
I’d tell them that offering choices is an important component of person-centered care. For people with dementia, it’s often too difficult to choose from several options. It sounds simple, but offering someone a choice, like “Would you like to wear this blue shirt today or this red one?” or “Do you want apple juice or cranberry?” is a powerful way to support their independence and quality of life.
I’d say that when not presenting choices — especially in safety situations like wheelchair transfers — it’s important use statements rather than questions. Statements are easier for people with dementia to process. For example, say, “Let’s get up now,” instead of “Would you like to get up now?”
I’d tell caregivers what they’re doing is vital and important. And I’d remind them to take care of themselves, too.
Most of all, I’d simply like to thank them.
*Editor’s note: Pseudonyms are used in this piece for residents and their family members.
Want to keep connected to The Conversation Project? Sign-up for our newsletter(s), follow us on social media (Twitter, Facebook, Instagram), download our conversation starter resources and feel free to reach us at ConversationProject@ihi.org.