When I was in second grade, my classroom visited a nursing home to play bingo. The morning of the visit, my friend confided that she was nervous that the residents living with dementia or other memory loss would ask her repetitious questions. She was worried that, because she would not know what to say, she would giggle and be unable to hide her discomfort. Her mother worked in dementia, so my friend’s mother had warned her not to be rude. I also remember not having any idea of what to say or do. We were eight years old. We were already facing the stigma of dementia.
It is now 7 years later. A few months ago, I was attending a Dementia Friends Café with Minnesota’s Act on Alzheimer’s at a local nursing home. The session leader invited an elderly couple to join us and discuss dementia. They quickly but politely refused, saying that since they did not suffer from dementia, they didn’t even want to think about the disease. They seemed to follow the philosophy that if we ignore dementia, it will not become our problem.
It is clear that a strong, negative stigma still exists about dementia in our community. It is seven years after my initial exposure to persons living with this disease, and it continues to affect all of us, from eight-year olds to current residents of nursing homes.
So, how do we fight it? What do we do with this stigma and social discomfort? Could the time be now for a societal “tipping point” to get over shame and awkwardness about Alzheimer’s?
“As a ninth grader at Visitation High School, I am also an author of a children’s book about dementia called Grandpa and Lucy. I got involved with the dementia community three years ago when I attended my first Dementia Friends session with Act on Alzheimer’s. I quickly realized how vital dementia education is for our community. And I have stayed involved with this issue and organization ever since then.
Writing this book and becoming active personally in dementia education has taught me how to connect with so many people. It continues to provide me with a way to confidently talk to, learn from, and enjoy the company of people who I once felt separated from by fear.
As this holiday season approaches, a time of love and light, Iinvite you to push past that fear. Take a class about dementia. Read a book, talk to a friend or family member, and get involved with this community of people. Giving Voice Chorus is one example of how community members are “paying it forward” on a local level. Music is a powerful and beneficial way to connect with a person living with dementia, and singing in a chorus builds trusting, supportive relationships. It is even possible to have a family sing-along while celebrating the holidays.
Dementia is a real problem that is affecting all generations, including mine. Ignoring the problem will not make it go away, but education and real people making real connections will make our community a better place for all.
You can make the holiday season a brighter one.
Edie Weinstein, Saint Paul, Minnesota
Giving Voice Initiative guest blogger