Advocate finds hope and purpose in living with dementia

Now 65, Christine was just 55 years old when she was diagnosed. Until then, she had worked in dementia care in Vernon for Interior Health for 20 years—an irony that isn’t lost on her.

“The day I was diagnosed, I still remember going home to an empty house to try to digest my doctor's news that I had only three to eight years to live, and I had better get my affairs in order,” she shares with the attentive audience.

As she soon discovered, the diagnosis wasn’t the worst part. A widow, she had to not only figure out on her own what was next, but she couldn’t find much in the way of help or resources, especially for young onset dementia. She sunk into what she describes as a deep, dark hole for two years. “I thought life was over. I gave up my home, my car, my ability to drive, my hopes, and my dreams.”

Christine—who describes herself as stubborn—says she eventually turned what was an ending to life as she knew it into a new chapter. “If I have to have this illness, it can’t be for nothing.”

Her search for help led her to Dementia Alliance International, a peer group made up of those medically diagnosed with dementia.

From there, she says she stepped onto a path of a new understanding of dementia and advocacy work. “I learned that life can be beautiful, even with dementia,” she says. In 2020, she published a book, For This I Am Grateful.

Today, Christine sits on a patient advisory board with the Canadian Consortium on Neurodegeneration in Aging, a national hub for collaboration research on dementia made up of 300 researchers  from 39 universities. She has spoken at the United Nations, at conferences as far away as Singapore, and in front of nurses at Thompson Rivers University.

Christine credits her two doctors in Vernon for her health today. But she also says her advocacy work and connecting with other people have given her hope and purpose.

While Christine recognizes that everyone’s dementia journey is unique, she says people shouldn’t be fearful.  She also challenges families and friends to counter stigma and stereotypes. “The worst thing we do for people with dementia is keep them isolated at home. We think, ‘What if they say the wrong thing? What if they do the wrong thing?’ I make mistakes and say the wrong thing all the time,” she jokes.

“When I was diagnosed, I knew everything about end-of-life care. But there’s a whole life between diagnosis and end of life,” she adds. “People with dementia should be allowed to live, and they and their families should be given the tools so they can thrive.”

Being diagnosed with dementia can be devastating. But you can still live well with dementia.

Shannon Paul-Jost is a clinical nurse specialist in gerontology at Interior Health. “Engaging with local community programs and services that support you and your family on your dementia journey can ensure that you have the best quality of life by finding purpose and meaning in each day," she counsels.

Social isolation is one of the top dementia risk factors and can exacerbate symptoms and caregiver stress. Check with your local Alzheimer Society, churches, libraries and parks and recreation for programs especially designed for those living with dementia. Adult day services provide friendly, social supportive environments for people at risk of losing their independence.

"Living well with dementia also requires friends and family to understand and support the person’s dementia journey, and to meet them where they are at each and every day,” Shannon adds. “Find ways to counter stigma and stereotypes by educating yourself and others.”

The Alzheimer Society of Canada is an excellent place to start for both individuals and caregivers. The Alzheimer Society of B.C.’s First Link® Dementia Helpline can help answer questions about dementia, provide support or coping strategies, or help you locate services in your community:

• English: 1-800-936-6033 (Monday to Friday, 9 a.m. to 8 p.m.)
• Cantonese and Mandarin: 1-833-674-5007 (Monday to Friday, 9 a.m. to 4 p.m.)
• Punjabi, Hindi and Urdu: 1-833-674-5003 (Monday to Friday, 9 a.m. to 4 p.m.)

First steps after diagnosis (Alzheimer Society of Canada)

First steps for families after diagnosis (Alzheimer Society of Canada)

First steps (PDF) (Alzheimer Society)

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