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Campaign aims to end the stigma that still surrounds dementia

Ashcroft Cache Creek Journal - 1/16/2020

Ashcroft and Cache Creek 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.

Heather Inglis of Ashcroft was surprised when she realized her mother Gloria might be living with dementia. "She was managing it and covering up her memory issues very well. It wasn't until October 2012 when we went on a cruise together that I noticed the degree of her forgetfulness.

"Because we were sharing a small stateroom, I saw firsthand lapses in her memory. There was one night when we were going to go to a formal dinner. Mom said she didn't want to go, but then completely forgot about that conversation and half-an-hour later got dressed up. When I expressed surprise that she'd changed her mind, she had no idea what I was talking about. I knew then that the time had come to talk to our doctor."

When Gloria was first diagnosed, Heather and Gloria were still living in the Lower Mainland, and Heather connected with Alzheimer Society of BC to learn about the journey that lay ahead. As Heather was planning on moving to Ashcroft, they discussed a variety of options of living arrangements for Gloria, who ultimately decided to move to Ashcroft as well.

"I was lucky that there was a support group for caregivers in Ashcroft, and for a while I was taking Mom to a support group for people living with dementia in Ashcroft and Cache Creek," says Heather.

While people were very supportive, Gloria struggled with sharing her diagnosis.

"My mother felt a lot of stigma about the disease, and so we held off telling the extended family for a few years. Eventually things had changed enough that when I was going to visit family in the States, I realized I wasn't going to be able to have honest conversations about my life without talking about what was happening with Mom. We talked, and eventually she gave me her blessing to tell her brothers and my cousins."

When Heather did talk to her family, they didn't totally understand what the diagnosis meant. "That's been one of my biggest frustrations as a caregiver, actually. People don't understand the disease."

Gloria now resides in long-term care for people living with dementia in Merritt, and both her daughters spend time with her regularly.

Heather and Gloria 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," which launched on Jan. 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 Hildebrand, Support and Education Coordinator for the Alzheimer Society of B.C.'s Central Interior 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 www.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 local Alzheimer Society resource centre 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 Hildebrand. "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."

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