Hopeless. Helpless. Incapacitated...or Inspired? Challenging the stigma of living with dementia.
The stigma attached to dementia is profound and pervasive. The public generally perceives people with dementia as hopeless, helpless, and incapacitated. This stigma affects both people living with dementia and their support networks including family, friends and medical professionals. These stereotypes blossom into prejudices that effectively strip away independence. Prejudices develop into institutionalized discrimination which, for persons with dementia, often means removing them from society.
From the moment of diagnosis, people living with dementia experience stigma and discrimination. Their doctors can offer them little hope. Most healthcare professionals send them home to get their end-of-life affairs in order. Doctors may prescribe pharmaceuticals to, perhaps, slow the progression of some symptoms for some amount of time. And that’s it. People go home, digest the news, eventually tell their friends and loved ones. Perhaps inform their employer. They investigate, they research. Maybe they watch movies. The underlying message is always the same. You’re going to die from this. You can’t do anything about it. It’s going to be really sad. We’re really sorry.
My grandmother died from dementia when I was in my twenties. I remember being in the facility dining room and sitting with these people while they ate their food. I didn’t eat with them, because watching them eat made me feel nauseous. My grandmother only ate with her fingers. She didn’t talk. She cried all the time. Every time I would visit her, which was five days a week for years, I cried when I left. All I could do was watch her get sicker and sicker and there was nothing I could do to help.
So my worldview was developed based on my experiences, the media to which I am exposed, and opinions of those around me. And everybody has their own experience or perspective of dementia. While the details may be variable, the big picture is the same: Dementia is a one-way ticket to losing all capacity. You’re going to die. It’s going to suck.
Ron was in his early seventies when he got a call from his doctor telling him that he had Alzheimer’s. Ron wasn’t surprised. He had been noticing some gaps in his short-term memory and had already lost two brothers to it. However, Ron was surprised to lose his driver’s license that day. It had been unceremoniously revoked without warning, and to Ron, it was like losing his right arm.
But Ron didn’t listen to the doctor’s advice to settle in on the couch and prepare to die. Instead, Ron decided to fight his Alzheimer’s. He started learning new languages and eventually enrolled at a university. Since he no longer had a driver’s license, Ron took public transportation to and from school. He joined study groups and made new friends, most of them decades younger than himself.
We may be diminished but we are not incapacitated. We can still do many things. We are still capable and we can still live a full life. — Ron Robert
Seven years after his diagnosis, Ron continues to defy stereotypes and prejudices. He is bright, articulate, quick-witted and passionate. He lives independently at home with his wife and likes to putter around in his workshop and take long walks out in nature. He has designed his own brain health treatment program which is dramatically effective.
A regular attendee and speaker at aging conferences in Canada, Ron is passionate about getting people who are living with dementia, a seat at the table when it comes to dementia research. Ron believes that scientists should be studying what people like him who are defying their diagnoses and living well. By partnering together, researchers and patients could capture experiential data and generate scientific evidence to then freely disseminate to the worldwide community of people living with dementia.
Kate was 49 when she was diagnosed with young-onset dementia. Her doctors told her there was nothing he could do; all others told her to give up work and to get her end-of-life affairs in order. The Alzheimer’s Association at the time suggested in their memory loss course that she start going to aged daycare once a month to “get used to it.” There were almost no services in Australia available to her as a person with young-onset dementia.
At the time of diagnosis, Kate was enrolled in university and completing her two Bachelor degrees. She went to one of her lecturers and asked if they thought she should give up her studies. After all, everyone had been telling her that continuing would be too stressful for someone with dementia and she wasn’t sure what steps to take next.
The lecturer pointed out to Kate that if her son had dyslexia, he would still be welcome at the university. It should be the same for Kate. She had been experiencing difficulties with reading, similar to dyslexia. She invited Kate to see her dementia symptoms as acquired disabilities and referred her to the Disability Support unit. This conversation proved to be pivotal.
Once Kate chose to perceive dementia as disability rather than a pathway only to death, she began to see things very differently. For the first time in a long time, she felt empowered.
The stigma inside the sector that’s supporting us, caring for us, that’s the worst stigma of all. — Kate Swaffer
Eighteen months after Kate’s diagnosis, one of her friends from nursing school had a severe stroke; the doctors didn’t think she would ever walk, talk or feed herself again. But after twelve months of intensive stroke rehabilitation, Kate’s friend was back in the operating theater working as a surgical nurse.
Curious, Kate started researching rehabilitation for dementia. Encouraged, she talked to her neuro physiotherapist and instructed him to pretend that she had had a stroke or a brain injury and to treat her like that. Together, they developed a brain injury rehab plan that incorporated neuroplasticity principles. Year after year, Kate has participated in occupational, physical and speech therapy.
Like Ron, Kate also believes that scientists should be studying what people like her are doing to slow the progression of dementia and live well.
Ten years after her diagnosis, Kate has continued to defy all medical models of the progression of semantic dementia. She has completed two undergraduate degrees, one Master degree and is currently a Ph.D. candidate. She travels, writes, does research and also and lives a rich, full life as a disability rights activist. As Chair, CEO and one of seven Co-Founders of Dementia Alliance International, Kate’s passionate dedication helps improve the lives of people living with dementia.
For some people, living with a new label and experiencing a new reality can trigger a devastating descent into depression and learned helplessness. Ron and Kate could have internalized the stigma attached to their disabilities. But something within each of them, perhaps a spark of the divine, inspired them to keep going and gave them strength to move on. They didn’t accept being helpless or hopeless or useless. They chose to fight and, because of that choice, are able to inspire and lead others.
When I think back to my grandmother, eating with her fingers and silently sliding into herself — isolated, hopeless and helpless — my heart breaks that I didn’t know then what I know now. And then I think of Ron and Kate and the hundreds and thousands of people around the world thriving and sharing their stories so that others may thrive, and my broken heart mends and swells with joy. There is hope.
I invite you to reframe dementia. Everyone alive today will know someone with Alzheimer’s or another form of dementia. This touches everyone.
The media and the medical community should recognize and treat people with dementia as capable, complex human beings. Society should remove barriers to education, employment, and healthcare for persons living with dementia. Family support, therapy, and education should be prioritized, beginning at the point of diagnosis.
But it all begins with the individual.
Each of us must choose whether to live in avoidance and denial, stuck in old patterns of bias, misinformation, and discrimination or move forward and embrace a new paradigm of equality, independence, and human rights.