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.
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.