Well, 10 months into “Changing the Story of Dementia,” and I admit I was wrong. I can’t change the story of dementia. Yes, I know, 10 months isn’t much time. Changing the story of dementia could take the rest of my life, and then some. And there’s the crux of it.
Recently I was on the GLAAD website. GLAAD is the organization that “rewrites the script for LGBT acceptance,” pretty much what we are trying to do with dementia. They have been working on this issue for over 30 years. It struck me that in all that time they were not entirely successful in “rewriting the script” and in fact, still have much to do.
They can’t rewrite the script. No matter what they do, there will always be another script, an old script, that may never be stamped out. What they can do, however, is write a new script and encourage people to operate off of this new script instead.
Likewise, there is an OLD story of dementia, and a NEW STORY.
The old story goes something like this: People with dementia are only as much as their disease and are nothing if they can’t be cured, therefore the emphasis must be on the cure and not on their well-being or rehabilitation. Because the disease is all about the deficits it causes in a person, people with dementia are passive dependents and recipients of care who require our support. They are incapable of doing most basic things and not able to learn anything new. They can make no meaningful contribution to society and do not require any sort of meaning or purpose in their lives. They are disappearing and shadows of their former selves, having lost all skills upon diagnosis. They have no power or control. They have behaviours and create problems. And none of this really matters because they are not there and no longer human, so we say “goodbye” before they’ve gone anywhere.
In contrast, the new story might go something like this: People with dementia are more than the disease. They may experience disabilities caused by dementia symptoms, and have a right to the same assistance as others with disabilities to function within their homes, workplaces, and communities. They continue to be skilled, experienced and intellectual individuals and have the right to be active citizens just as they were before the diagnosis. The power and control over their lives should remain with them. They may appreciate support under their own terms and as defined by them, but people with dementia should be provided with opportunities to support others, to contribute in meaningful ways to their families and society, and to live lives with purpose. People with dementia deserve respect and dignity and recognition as full human beings with potential and the ability to impact others until their last breath, just like anyone else.
The old story is the “medical model,” and the new story is the “social model.” For more on this, see the Dementia, Rights, and the Social Model of Dementia.
The old story won’t go away, not in my lifetime and potentially not in my children’s lifetime either. So I’ve decided that rather than struggling to change the story, I’ll work hard to get the new story out via such avenues as My Dementia Story and the 2016 Mindset Roundtable Discussions, and concentrate on helping care partners, media, organizations, businesses, communities, etc. to understand both stories, recognize the ramifications of each, and make wise choices about which story they will base their decisions on.
How does which story you choose make a difference? Here’s a biggie. The Canadian federal government seems poised to finally approve the development of a national dementia strategy. Wouldn’t it be a shame if the entire process to create the strategy were based on the old story, with only token involvement of people with dementia because the people in charge can’t imagine how a person with such deficits could possibly have anything meaningful or intelligent to contribute. Fortunately, the Ontario Dementia Advisory Group elbowed their way into being witnesses to the Senate Committee that is studying issues of dementia in Canadian society. If it were not for ODAG going through the application process to ask to be heard, the Committee would not have heard from ANY people with dementia during their study of issues of dementia. Old story indeed.
Here’s another example that has to do with our care system. Today I read an article in the Calgary Herald (sorry, the link has been taken down already), written by a care partner for her mother. In this article, the author talks about how people with dementia are treated like second class citizens, particularly in the health care system. She writes: “If you had another illness, say cancer, and you fell and broke a pelvis and were admitted to hospital, would the cancer treatment be stopped? Of course not, because the system recognizes cancer as a real illness that needs treatment. Dementia, it seems is different.” Our health care and long-term care system–and our retirement communities and assisted living for that matter–are constructed upon the old story. Schlegel Villages on the other hand, takes every opportunity to make sure their operations, their care, their staff training–their everything–are in line with the new story. While they are already among the best of the best in care in the world, it amazes me that they are constantly looking for ways to be “new story.” I’ll also refer you to the blog of Susan Macauley, who writes extensively about what happens when our care system listens to the old story only.
I could go on and on, but I’ll close with a personal choice I made about nine years ago with my own mother, who had vascular dementia. From the time she showed symptoms of short-term memory loss and confusion, we all–including my mother–operated under the old story. Stigma, shame, don’t talk about it, nothing to be done, she’s disappearing, more shame, can’t help her, silence. Finally, I read a book called Dancing with Rose by Lauren Kessler, in which she tells about her experience of working as a personal support worker in memory care and how she found a new story of dementia there. New story? I decided to look at my mom and interact with her while operating within the guidelines of the new story, that she was still there, probably bored out of her skull because no one would bother to adapt activities and give her a chance to do anything but watch TV. I only wish I’d heard the new story much much sooner; what a difference that might have made in her life. And I wish that, like many of the brave people with dementia who tell their stories on My Dementia Story, she had questioned the old story and set out to write her own.
So, old story, new story. Which one will you choose?