‘Everyone you meet is fighting a battle you know nothing about. Be kind. Always.”
Is it a quote by Plato? Ian Maclaren? Brad Meltzer?
It’s widely attributed. The shroud of its less-than-clear origins fits with the heart of the statement. We don’t know what battles the people we meet are facing. Those for whom we do know the name of the battle, we often don’t know the depth of the struggle. That we respond with dignity and kindness is what’s key.
What Joseph and Kay share about their journey through Alzheimer’s disease illustrates the point:
Joseph was diagnosed with early onset Alzheimer’s three years ago. When Joseph and Kay shared the news of his diagnosis with their close friends, they quickly noticed a change in how others related to Joseph.
Joseph said no one treated him the same after he shared his diagnosis. It was as if the disease had taken primacy in terms of his identity.
Nearly every conversation with friends thereafter began with some version of “how are you” or “how is Joseph doing?” Joseph and Kay say the question is nearly always asked with what they call a “sympathetic tilt of the head” that conveys not just sympathy, but worse, pity.
Maybe that’s an accurate assumption, maybe not. Either way, from Joseph’s perspective, the lens through which people perceive him is the disease.
Now a few years into the disease with incremental but steady decline, Joseph says some people don’t speak directly to him at all but instead address his wife with comments and questions, even when he’s present.
“I just want them to see me,” he said. “Not the disease, but me. I’m still the same person. I struggle with some things, and I will struggle more and more as time goes by, but I’m still me in here. I always will be. I just want them to know that and want them to not treat me like I’m invisible. They talk around me, often even when the conversation is about me.”
When asked what he wanted others to know about how to interact with him, Joseph said, “The kindest thing they could do is to treat me exactly as they did before while understanding that some things, like conversation, will take me longer. I might repeat myself. I might confuse things. I know that can be frustrating, but please just be patient. I’m doing the best I can.”
Admittedly, Alzheimer’s disease and other forms of dementia leave many people uncertain about how to interact with those who have the disease and how to support their family and others who care for them as the disease progresses.
There’s a global movement to increase understanding and change the way people think, act and talk about dementia, and to increase understanding of how to interact with people who live with some form of dementia. Developed by the Alzheimer’s Society in the United Kingdom, the Dementia Friends initiative is underway in the U.S.
The Dementia Friendly America initiative is catalyzing a movement to more effectively support and serve people who are living with dementia and their family and friend care partners. The effort invites everyone to become a Dementia Friend.
A Dementia Friend is someone who, through viewing a series of online videos or attending a live interactive session, learns about what it’s like to live with dementia and then turn that understanding into action.
The videos are short and provide info about dementia, how to recognize the signs of dementia and simple actions you can take to personally contribute to making your community dementia friendly. The videos are targeted at various segments of the community where one might interact with someone living with dementia.
By helping everyone in a community understand what dementia is and how it affects people, each of us can make a difference for people touched by dementia.
To learn more about the effort, access the videos or sign up for a live interactive session, visit www.dementiafriendsusa.org.
If you’re a care partner for someone living with dementia, there are local resources to help. The Area Agency on Aging offers two evidence-based classes: Developing Dementia Dexterity and Creating Confident Caregivers. Both are offered online via Zoom. Other services and supports may be available to meet your family’s needs.
For more information on the classes, or other available resources, call the Info-Line for Aging and Disability at 800-654-2810.