I Live with Dementia Every Day—But It Doesn’t Define Me

In 2016, Leonard Howe was diagnosed with dementia, a condition that many Canadians fear and few understand. Now, he wants to end the stigma.

Leonard HowePhoto: Leonard Howe

“In the beginning, there was a sense of isolation,” remembers Leonard Howe. At just 69, Leonard was diagnosed with Lewy body disease, a lesser-known form of dementia that occurs because of abnormal protein deposits in the brain—called “Lewy bodies” after the scientist who discovered them. It took nearly a year of testing for Leonard to receive his diagnosis.

“Lewy body disease can be hard to diagnose, because Parkinson’s disease and Alzheimer’s disease cause similar symptoms,” says Leonard. A key difference, however, is in one of Lewy body dementia’s hallmark symptoms: hallucinations. For Leonard, they often feature “a girl from the twenties, serpentines or small men wrapped in burlap who look at my books.” Leonard also experiences disorientation—especially in the dark—and difficulty reading books because, “in the middle of sentences, the words heat up and drip away.” He even needs to pre-plan the completion of simple household chores like changing lightbulbs or mowing the lawn. “Every time there’s a new symptom, [my wife and I] have to figure out a way to face it, assess it, re-strategize and deal with it. I often feel fatigued and need to nap,” he says.

“Many people who are unfamiliar with dementia equate it with memory loss, but often memory loss is not the first or the most significant symptom,” says Nalini Sen, Director, Research Program, at the Alzheimer Society of Canada, “and it affects each person differently. A diagnosis doesn’t necessarily mean that the person will fast-forward to the later stages overnight.” For Leonard, symptoms can be subtle at times, obvious at other times and very inconsistent overall. One day, he might need a two-hour nap and have to miss a planned activity, while another day or even another hour of the same day, he’ll have energy and very few symptoms.

Leonard & Naome HowePhoto: Leonard & Naome Howe

But it isn’t just the symptoms that make life more difficult. For people like Leonard who live with dementia on a daily basis, stigma and discrimination are huge barriers to quality of life. In a 2017 survey conducted by the Alzheimer Society, those who have personal experience with dementia say the top forms of discrimination are:

  • Being ignored or dismissed
  • Difficulty accessing appropriate services and supports
  • Being frequently taken advantage of
  • Being feared or met with distrust or suspicion

For these reasons, many Canadians with dementia feel uncomfortable disclosing their situation to others—even family members and friends. And it’s no wonder. Over half of Canadians admit to telling dementia-related jokes and using stigmatizing language such as the words senile, crazy or demented. Negative attitudes and misconceptions also prevent many from getting a diagnosis and seeking treatment and support.

Part of this comes from a gap in knowledge. “I can go out in a public setting and most people won’t really know what dementia is and many won’t be able to talk much about it,” Leonard says. Despite the fact that more than half a million Canadians currently live with dementia and 1.1 million are directly or indirectly affected by it, only five percent of people say they would bother to learn more about dementia if someone close to them were diagnosed.

“We all have a role to play in making our communities safe and inclusive for people with dementia,” adds Sen. “Whether or not you know someone with dementia, by taking a moment to learn more about the disease, we can all better understand and support those living with it.”

To help us all on the path to understanding, Leonard has shared the following tips:

  • Don’t be afraid. In many ways, the person who has been diagnosed with dementia remains unchanged and will want to continue to live a normal life for as long as possible. Their story continues—dementia is just part of their story.
  • Be patient. When you’re speaking with someone with dementia, he or she may forget the topic of conversation or lose key words or phrases. You may need to offer clues or reminders.
  • Don’t make assumptions. If you meet one person with dementia, you’ve met one person with dementia. There is a tendency for people to wrap it all up under a single banner of Alzheimer’s rather than dementia, but Lewy body dementia, for example, is vastly different.
  • Tell your story. If you have dementia or know someone living with it, tell others what it’s like. They need to hear your stories and hear your experience to understand. Sharing your story will also help you come to terms with who you are now—and more importantly, who you are becoming.
  • Knowledge is power. If you don’t have dementia, ask those around you who may so they can tell you their stories. You will learn invaluable lessons.

January is Alzheimer’s Awareness Month, but Alzheimer’s disease is just one form of dementia. Many Canadians live with other dementia types such as Lewy body dementia, vascular dementia, frontotemporal dementia and mixed dementia, and they deserve compassion and understanding, too. To read their stories, visit ilivewithdementia.ca.

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