Editorial: Alzheimer's Disease and other upsetting realities
What’s in a name? A contentious sign of the times
Alzheimer’s is, especially for older people like me, a frightening possibility. Most of us know people, some of them close and cherished, who have been altered by the disease and died from it. Some of us don’t like to be reminded of it.
Many decades ago, locals enjoyed going out in the winter woods on their skis and snowshoes, exploring and making routes to follow. This is not a change of topic – bear with me.
Some of those routes eventually became rough trails. Some of the old-timers erected hand-made signs that acted as landmarks, to help people figure out where they were, as some of the trails could be a bit confusing. One sign rather waggishly asks “Quo Vadis?” Other signs labeled one maze-like trail “The Alzheimer’s Loop” or “Alzheimer’s Trail” and one sign explained, “You don’t know where you are, and you don’t know where you’ve been, but it’s fun!”
Those signs became very weathered with age. At some point, someone refreshed the lettering on some of them.
Fast-forward to current times, when the Rossland Range Recreation Site is a reality, with ten authorized, volunteer-built, new day-use shelters replacing the beloved old illegal pole-and tarp “huts”, an Accessible Trail at Strawberry Pass, maps posted at nearly every trail junction, and hordes of people out hiking, biking, skiing on all sorts of skis and split-boards, snowshoeing, and generally enjoying the area.
At a trail junction on the south-west curve of the Accessible Trail, there is a new sign honoring the old-timer’s name for that disorienting old trail that wound around the area: “Alzheimer’s Junction.”
That sign has caused distress to a few people, who felt it was disrespectful or otherwise offensive.
In January, one woman sent a message to the board of directors of the Friends of the Rossland Range (FORR), the society that partners with the Trails and Recreations branch of the Ministry of Forests to manage the rec site. She said,
First, I’d like to thank you for the wonderful network of trails and cabins you have created. I love taking visitors up to Strawberry Pass to show them another gem of our area! This past Christmas, my whole family, including new grandchildren, were here for a truly memorable holiday. We spent one day in and around Bootie’s cabin – a great, accessible cabin for young families.
On our ski/snowshoe around, we found ourselves at “Alzheimer’s Corner”. My children lost their grandmother to complications from Alzheimer’s disease fairly recently and were horrified by the trail name. “Why would they name a trail that?” my daughter asked. I really don’t know, but do know that people make light of the disease, often joking about memory loss. I promised to find out how the name came about and to encourage FORR to change it.
This month is Alzheimer’s Awareness Month. The aim of this campaign is to reduce the stigma for people experiencing dementia. It does not appear that FORR intended its trail name to act as an awareness-raiser. I’m sure you would not name another trail “Cancer Corner”. Alzheimer’s is not a joke; it is a disease. Please change the name of this trail.
The FORR board discussed her letter and decided to consult with the Alzheimer Society of BC. They were referred to gentleman named Jim Mann, a volunteer described on the Alzheimer Society website as “an invaluable leader and partner in much of our work at the Alzheimer Society of B.C., both behind the scenes serving on our board of directors and contributing his expert knowledge and lived experience to numerous projects, as well as in the public eye, sharing his personal story to break down stigma and inspire others to take action over the last 14 years.”
The introduction goes on to note,
“The University of British Columbia recently recognized Jim as the most influential person in Canada in countering stereotypes and building a more inclusive society for people living with dementia, awarding him an honorary Doctor of Laws degree. The Society is incredibly grateful for the opportunity to work with Jim, who recently shared some thoughts on his ongoing advocacy.”
In response to an explanatory phone call from Rob Richardson, one of the FORR directors, Jim Mann wrote,
Thank you for your recent telephone conversation with me about the name of a trail in a local recreation area, Alzheimer’s Junction. My response to you then as it is with this e-mail, is to be clear that this is my personal opinion and does not reflect any “official” position by anyone or any organization.
First, let me give you a bit of my background. I have a diagnosis of Alzheimer’s disease and was first diagnosed in February 2007 at the age of 58, and since that time I have been on the boards of a number of organizations including the Alzheimer Society of Canada and the Alzheimer Society of B.C. I have written sole-author and co-authored papers, co-investigated research projects and I am currently in that role with a number of other research projects. I have made a few hundred presentations large and small focused primarily on the stigma of Alzheimer’s dementia, as well as to increase the visibility of the disease as an illustration of being able to live a positive life after diagnosis, and for this work, in the Fall of 2020 I was awarded an honorary Doctor of Laws degree by U.B.C.
You briefed me on the reason for our conversation, a letter received from a resident questioning the naming of this trail Alzheimer’s Junction, which she found disrespectful.
No one talks about dementia. According to polling from the Alzheimer Society, fifty percent of all Canadians do not believe they could live well with dementia and almost that same number would feel ashamed or embarrassed if they had dementia. In fact, more than a quarter of Canadians believe that their life would be over if they had dementia. All that to say, Rob, there’s a lot of talking we need to do and a lot of awareness raising that needs to be done.
That background plays a big part in why I don’t take offence to the name of the trail, nor do I see it as disrespectful in any way. What I do see is the name of the trail being a conversation starter between friends who are hiking, snowshoeing, or perhaps cross-country skiing. Perhaps some will speak with others about the name of the trail, others may Google Alzheimer’s to find out more. Some may have relatives or friends living with dementia with whom they may have a more in-depth conversation about how they are doing. Many articles and papers have been written about friends and even family members no longer visiting the person once they are told of their dementia diagnosis, and perhaps the name of this trail will be the beginning of renewed acquaintances and conversations. I live in hope.
As more and more Canadians are listening to the what’s good for the heart is good for the brain message, they are outside walking with friends and family, which is not only good exercise, but provides socialization, combats loneliness, both of which positively and significantly impact people living with dementia at all stages. Perhaps this message could be acknowledged with an adjacent sign to Alzheimer’s Junction.
I believe it is important to think of the gentlemen who banded together to establish the trails. They were no doubt making the trails for themselves and their own enjoyment, but I’m sure they saw the potential for establishing healthy habits with a vision of seeing the beauty in all four seasons. Not knowing these gentlemen, one or maybe a few of them were experiencing and dealing with dementia in their own lives. When they realized the possibility of confusion with this one trail, maybe they thought the name would be a hint to the type of trail it is, and perhaps it even made them proud for their accomplishment and felt it was a dedication or personal recognition of sorts.
I will leave you with a story that will give you one reason for my continued advocacy efforts. When staff were advised of a consultant’s contract in the field of Alzheimer’s dementia, their reactions were starkly different compared with other diseases. He said employees would openly talk about cancer and their relative or friend currently dealing with treatments, or heart issues, like strokes. With Alzheimer’s it was totally different. An employee would enter his office, shut the door, and then would talk about that person’s connection to the disease. They would even speak to him in a whisper.
Again, Rob, thank you for the conversation, which I believe this email summarizes. If you would like to discuss this further, please feel free to send me an e-mail.
The FORR board discussed the issue at length, and ultimately decided to keep the “Alzheimer’s Junction” name, but to ensure that the sign is accompanied by another sign providing the history of the name, and information on how to learn more about Alzheimer’s, and pointing out that getting exercise out in the fresh air is a good way to alleviate risk.
The board is consulting with Jim Mann again, on the wording of the sign.
I was never offended by the name of the Alzheimer’s Trail, even though the disease has devastated the lives and families of people I loved dearly, who died of it. I sympathize with those who are upset by the name, but hope they can accept it as a way to encourage learning and acceptance.
The original message asking that the name be changed said, “… people make light of the disease, often joking about memory loss.” I agree; we do that. I think we often use humour to reduce our terror of things that are genuinely frightening. But I don’t agree that such use of humour is always disrespectful.
The discussion leads me to consider what I find offensive and scary, and it’s a long list. Industry denial of climate change. “Trickle-down” economics. Government actions that accelerate climate change. Regressive tax laws. War. Lobbying of governments by the wealthy to preserve their unfair advantages and their hugely inequitable share of the world’s wealth. Conspiracy theories of the more brainless sort, such as the one attributing all manner of evil to the “15 minute city” urban planning concept. Racism and other forms of bigotry. Governments’ failure to follow or enforce their own environmental protection laws. Human trafficking. Slavery (yes, it still exists). Cruelty to humans and other animals. Excessive plastic packaging and other unnecessary uses of plastic. The widespread use of pesticides and herbicides. BC’s unsustainable Allowable Annual Cut. Attack ads in politics and elsewhere. Political lies. Nasty and obstructive behaviour in Parliament and provincial legislatures. Oh, I could go on … but you get the idea.
Now, if only people could achieve resolution of the things that offend us by taking action. Kudos to the woman who wrote the letter to the FORR board, because she took action.
I hope the resulting sign will appear soon, and work as the FORR board hopes – stimulating thought, raising awareness and increasing understanding, spreading useful information and minimizing stigma about Alzheimer’s disease.