How and Why I Got Involved in Changing the Story of Dementia
Often I am asked why I’m so involved with the world of dementia, with advocates with dementia, with changing the story of dementia.
The reason is because we lived that story with my mother.
Nine years ago, my mother, Betty, passed away, we think from vascular dementia. Like 50% of Canadians with dementia, she was undiagnosed.
When Betty first showed signs of short-term memory loss and confusion, we didn’t know that there were different types of dementia. If we’d done some research and talked about what we’d learned, perhaps we would have discovered vascular dementia, and we might have realized that those couple of times Betty fell might have in fact been strokes, and that there was real cause to go to the doctor, and there was probably even something that could have be done.
Instead, we kept our heads in the sand.
Over the eight years that Betty lived with symptoms of dementia, my sisters and myself, and my stepfather talked about what my mom was going through for perhaps 30 minutes — total. Even though she gave up her driver’s license, stopped knitting and reading and her repertoire of recipes was reduced to applesauce cake, and even though she once wandered across a four-lane road.
And we never dared talk to Betty about what was happening to her.
Can you imagine living for eight years, feeling your cognitive abilities slip, losing your favourite activities, feeling more and more confused and scared and isolated, and not once talking to anyone about it? And everyone pretending there was nothing wrong?
We were worried. Something was wrong and we wanted confirmation. We tricked Betty into going to the doctor under the guise of a physical. The doctor gave her the MMSE, and she got a perfect score. Huh. So the doctor said, “There’s nothing wrong with you,” and Betty said smugly, “See, there’s nothing wrong with me!” and my stepfather said, “The doctor says there’s nothing wrong.” And because the doctor was, like, God, that was that.
And because she didn’t have a diagnosis, at that time, in 2005 or so, the Alzheimer’s Society could not offer assistance. So her husband–her primary caregiver–had no information, no CCAC (Community Care Access Coordinator…an Ontario thing), no nothing, and friends were dropping like flies. And yet, no one talked about it.
In the spring of 2006 Betty had a major stroke, and she lost the remainder of her short-term memory. Her legs were paralyzed. Betty was given some rehab at the hospital to try and get her walking, but because she couldn’t remember that she’d had rehab or that she even had a problem, they stopped it.
At one point, we thought Betty was dying. She lost all vitality and slept most of the time. My sister grilled the nurse and discovered that Mum had been put on the anti-psychotic Risperdal. What? At my sister’s insistence, they stopped giving her the drug and our mum returned from the dead.
The hospital gave us one week to find long-term care. CCAC helped, but we didn’t know the right questions to ask and ultimately we chose the “nicest” place, the one that was newest and most modern.
Betty’s issues with memory loss and confusion didn’t make her very popular with her fellow residents, and her calling for “help” and for my stepdad after he left each day, didn’t make her popular with the staff. My sister fought a constant battle to keep her off Risperdal.
After six months Betty was moved to the locked unit where presumably she would receive more appropriate care. While the home was nice and modern, it wasn’t exactly on the forefront of dementia care. For the most part, she sat in her wheelchair, day after day, watching TV or listening to music. We didn’t look for anything special for her to do because, we thought, what’s the point?
As you can probably tell, we’d bought in 100% to dementia’s stigma, and we were characters in what I now call “the old story of dementia.” We weren’t alone; the 2012 World Alzheimer Report from Alzheimer Disease International states that 24% of people with dementia hide their diagnosis due to the stigma.
In the old story, we say “goodbye” too soon. People with dementia are “fading away,” “not there,” and “shadows of their former selves.” We spent most of eight years saying goodbye to Betty, rather than acknowledging her challenges, seeking support, and finding ways to help her live with dementia.
In the old story, dementia is to be feared, and not talked about. My parents became increasingly excluded and isolated as their friends stopped calling.
The old story is based on what is called the medical model of disability, where dementia is seen as a disease associated only with irreversible decline and deficits and where we are powerless to do anything without a cure. People with dementia are treated as passive dependents and recipients of care who need our support.
So, my mother and our family were characters in this old story of dementia, not knowing that there could be another story, a new story. Until…
About six months before Betty died, I read the book Dancing with Rose: Finding Life in the Land of Alzheimer’s, by Lauren Kessler. The author wrote about her experience of being a personal support worker in a memory care unit for a year, where she discovered that people with dementia were still there! There was life! Did that mean my mother was still there as well? Had we said goodbye too soon? I decided to find out.
I started modifying games and activities so we could do them together. I created a book for and with her that she could read, and she did (the end product of which is In My World). We started having conversations.
I then got the book Alzheimer’s From the Inside Out by Richard Taylor, PhD who wrote about his lived experience of dementia and how he stopped watching TV 24/7, found purpose, and started living again. Wow, did Betty still need purpose in her life too? I started asking the staff if she had opportunities to have purpose and give back. I got a lot of blank stares.
Perhaps it was all too little too late for Betty, but we did spend some good times together before she passed away. And the realization that there was a new story, that we needed to learn how to say “hello” to people with dementia, changed my life.
I began to look for the humanity that really, was right before my eyes in the dementia care unit. I began talking with people, not just my mother, but with others too, and taking the time to hold hands with those who could only speak with their eyes.
What I’ve learned is that each person deserves to have the light that burns inside them, the light that makes them human, for it to burn as brightly as possible. That the “I” — the soul, the spirit, the person, the “ME” — goes on no matter what, even if our temptation is to see “dementia” rather than the “ME.”
The new story says that people with dementia are more than the disease. They have the right to lives full of love, respect, meaning and purpose, with recognition of their value until the very end. We as a society are very good at “devaluing” people, and too often we see people with dementia devalued.
In the new story, people may experience disabilities caused by dementia symptoms, but have a right to assistance to function as active citizens within their homes, workplaces, and communities. They continue to be skilled, experienced and intellectual individuals. The power and control over their lives remains with them. They may appreciate support under their own terms, but people with dementia need–indeed, desire–opportunities to support others, to contribute in meaningful ways to their families and society, to feel needed, to feel successful again.
It’s also the story of a population that is often overlooked. Due to the stigma of dementia, the poster child of which is the elderly person slumped over in a wheelchair, it is not understood that people in the early stages can continue to live with the disease, sometimes for 10, 15 or 20 years. And this I think is the biggest impact that defeating the stigma, changing the story of dementia can have. It is precisely at this stage when people need support to ensure their well-being and ability to live active and meaningful lives, and perhaps even extend their lives. Ironically, people in the early stages report a gap in services between diagnosis and entry to long-term care or fulltime home care, meaning that the vital support that could even slow the progression of the disease, is difficult to impossible to find in Canada, unless you live in a major city. And even then, it is not cohesive or well-known, and not well-funded.
So how do we change the story, to get rid of the stigma? Because of the stigma, my family didn’t talk about my mother’s struggles with dementia or the impact on ourselves. But we needed to talk about it, to get around the stigma and to start finding the support and services and proper diagnosis that my mother needed. So what do we do first? Talk to get rid of the stigma, or get rid of the stigma so more people talk about it?
I think it starts with talking. We need a new conversation about dementia, one that includes new words not usually used in the same sentence with the word “dementia.”
And people with dementia need to be included in this new conversation rather than being left out, which tends to be the status quo.
So I hope you take this opportunity over World Alzheimer’s Month, to start a new conversation about dementia.
