Sooke and other West Shore residents living with dementia are going public for a third consecutive year in an effort to change hearts and minds and tackle the ongoing discrimination they experience in their day-to-day lives.
“Dad was becoming forgetful,” says Helga Strauss, whose father Walter is living with dementia.
A certified accountant who with his wife Karen had spent years building a crafting magazine with more than a million subscribers, Walter was starting to have trouble with numbers. “He and Mom were living in the Bahamas at the time. Nobody wanted to believe it, but something wasn’t right.”
The couple moved back to Canada in 2017 to be closer to family, but it wasn’t until 2018 that they received a formal diagnosis after a long process of tests. “We were glad to finally have a diagnosis,” Helga shares.
Since his diagnosis, Helga and Walter have found a new and profound connection with each other through music.
“He was never interested in music before,” Helga says. “But now he says he wants to be able to sing it out!”
Music has helped Walter stay active and engaged while living with dementia, and he attends line dancing classes as well as the Alzheimer Society of B.C.’s Minds in Motion® program. “He remains curious and wants to learn new things.”
Helga says that one of the most important lessons she’s learned since dementia came into their lives is that she can’t correct Walter when he doesn’t remember something. “It has to be about letting go and enjoying our time together.”
Walter and Helga are some of many Canadians who are courageously stepping forward with their personal stories in the Alzheimer Society’s nation-wide campaign, I live with dementia. Let me help you understand. It launched Monday, January 6 as part of Alzheimer’s Awareness Month.
Spurred by alarming research indicating that one in four Canadians would feel ashamed or embarrassed if they had dementia, the campaign gives a voice to Canadians living with dementia who are frustrated by the constant assumptions and misinformation associated with the disease.
“Unless you have experienced it firsthand, it can be difficult to appreciate the damage stigma can do to individuals and families facing dementia,” says Tara Speirs, Minds in Motion® Coordinator for the Alzheimer Society of B.C.’s Greater Victoria resource centre.
“Too often, negative feelings, attitudes and stereotypes surrounding dementia dissuade people from seeking help and discourage others from lending their support. By providing a platform for Canadians to share their stories, we can cultivate empathy and compassion and help break down the stigma so that Canadians living with dementia can live a full life.”
Since the launch of the campaign in 2018, more than 65 Canadians with dementia, including caregivers, have become spokespeople in the campaign, aimed at taking a stand against the stigma associated with the disease.
To read their stories and find out how you can help in the fight against dementia stigma, visit ilivewithdementia.ca. The site also features practical information and downloadable materials, including key myths and facts about the disease, as well as social media graphics to help spread the word about the campaign. Visitors to the site can also connect with the Alzheimer Society in Greater Victoria for help and support.
Through a host of programs and services, advocacy and public education, Alzheimer Societies across the country are there to help Canadians overcome the challenges of living with Alzheimer’s disease or another form of dementia. The Society also funds research to improve care and find new treatments and a cure.
More than half a million Canadians are living with dementia today. Many more are family members who provide direct care or are otherwise affected by dementia. In the next 12 years, nearly a million Canadians will be living with dementia.
“The number of Canadians living with dementia is soaring,” says Speirs. “So this is an extremely important campaign to pause and think about our attitudes and perceptions and build a more accepting and inclusive society for individuals and families living with dementia.”
Dementia is a term that describes a general group of brain disorders. Symptoms include the loss of memory, impaired judgment, and changes in behaviour and personality. Dementia is progressive, degenerative and eventually terminal.
ABOUT THE ALZHEIMER SOCIETY OF B.C.
Families across British Columbia are affected by Alzheimer’s disease or other dementias. The Alzheimer Society of B.C.’s vision is a world without dementia; that vision begins with a world where people living with the disease are welcomed, acknowledged and included. Working in communities throughout the province, the Society supports, educates and advocates for people with dementia, as well as enabling research into the disease. As part of a national federation, the Society is a leading authority on the disease in Canada.