Dementia Friendly: Nothing to Do with Medicine
- Vessels of Comfort
- Aug 7, 2020
- 5 min read
As I tuned into NBC’s Nightly News two days before Memorial Day, I expected a collage of soft news, nothing that would pique my interest. I don’t remember what the day’s top stories were, but a short feature on the world’s most “dementia-friendly” city – probably “soft” for some viewers – caught my attention.
Bruze, Belgium? Googled it. No – Bruges. Located in northwest Belgium, my laptop says that its canals, cobbled streets, and medieval buildings make it unique. Its port is a center for fishing and European trade.
But what distinguishes Bruges from other places is the way it takes care of its people with dementia. Persons living with this condition aren’t hidden or tucked away in an effort to protect others from one of the realities of our aging society. Instead of isolating this segment of the population, Bruges embraces it, intentionally integrating these members into the city’s fabric. People with dementia can go outside without fear. Police officers and shop keepers know how to treat them because they have been trained. Many still live independently because volunteers visit them. The result: The progression of the disease has slowed because patients are able to stay at home in the comfort of what is familiar to them, in surroundings that are not foreign. Red handkerchief sticker signals outside shop doors relay the message that the establishments are dementia friendly.
What a concept! No, what a phenomenal approach!! What a demonstration of respect and a way to honor Bruges’ elderly.
The evening news reporter ends the piece profoundly. “Nothing to do with medicine,” he says, “but everything to do with how we treat each other.”
Nothing to do with medicine, but everything to do with how we treat each other.
I only know how my mother was treated.
Medical appointments were especially hard for us. I’ll never forget when we four children sat in the doctor’s office and watched our Mom first draw a clock – part of a neurological screening assessment. Her clock was off, and it was disheartening to see in black and white that Mama was sick. Early on during visit after visit, her primary care physician would give her a few words to remember, then ask her to recall them 10 or 15 minutes later. Sometimes she could. Other times, she couldn’t. Then when we started seeing a neurologist regularly, I became aggravated with the seemingly condescending way she’d be asked: Do you know where you are today? How many children do you have? It wasn’t long before Mama turned the tables: Well, doc, do you know where you are today? By the way, how many children do you have? Quietly, I cheered her on! You tell him, Mama, I yelled to myself.
Eventually I got used to the appointments and knew what to expect. But time nor the number of appointments lessened my disappointment with some of the very people who provided her care. As we researched on our own and reached out to professionals for enlightenment, it became evident that many of her health care providers just didn’t know a hill of beans about dementia. During trips to the doctor, when I’d say our mother has vascular dementia, her nurses would respond, “Oh, Alzheimer’s Disease.” I got tired correcting them. My sister, the nurse, told me that one of the probable reasons Mama was categorized inaccurately is because there is no way to “code” vascular dementia for insurance purposes. They acted as if Alzheimer’s was the umbrella, not Dementia. And they pretended never to hear the term “vascular.” Few took into account that she had suffered a stroke after which her condition slowly spiraled – even though it was a part of her history that I repeated over and over again. The quality of Mama’s care only changed somewhat for the better as we shopped around for providers, including a new neurologist, who were knowledgeable, skilled and empathetic.
If most of her health providers didn’t understand her condition, how could we expect her neighbors, church members, family members, or friends to understand her journey or the progression of her medical situation? To the minority who did, including the Christian neurologist who cared for her until she died, we will be grateful forever.
There is a certain level of “stigma” attached to dementia. Truthfully for a long time, it’s a word that I didn’t even want to say. My education about this condition was forced, and it was difficult for me to accept its connotations. But my siblings and I had no choice in these matters.
Education and experience are integral to change. As I look back, there were people who in public frowned upon her always being out with us. A few people openly suggested that we keep Mama at home, never to enjoy God’s air again, and to just let her live out her days in the confines of a house. That attitude needs to change.
Counter to that, there were people who were understanding. These were people who were especially kind, showed compassion, and those who obviously had walked in our shoes or on paths that were similar. I could see it in their eyes. It’s a knowing that I can’t explain.
One of the similarities between Bruges and the “city” we created for our mother was that we cared for her in the comfort of her and our homes, places that were familiar to her in surroundings that she knew. We believed that she lived well long after her diagnosis because we tried as much as possible to help her maintain a life that was as close to the one she had before her diagnosis. (I stopped working to do that. We realize that for many families that is not possible or preferable.)
But no matter where a person who has dementia lives out his or her diagnosis, each of them deserves a dementia-friendly environment.
I don’t know if the United States of America will ever have a city that is dementia friendly. Maybe the best that we can hope for are dementia-friendly people: those who don’t look at those struggling with this condition or their caregivers as strange or peculiar; those who won’t look away when a person with dementia is talking; and those who aren’t afraid to touch, listen, interact, or try and understand.
“Nothing to do with medicine, but everything to do with how we treat each other.”
SCRIPTURES
Exodus 20:12 – Honor your father and your mother, that your days may be long upon the land which the Lord your God is giving you.
Comments