“I live with dementia…in Surrey. Let me help you understand.”

“I’ve felt the need to educate people around us to help them understand what we’re going through,” says Sheila Carroll, a resident of Surrey whose husband Jim Donald is living with Lewy body dementia, a form of dementia which is not as well-known as more common ones like Alzheimer’s disease. “I’ve done a lot of research because knowing more about the disease has helped me cope.”

Sheila and Jim first noticed changes in 2013, when Jim began to have trouble driving and showed signs of aphasia: “He’d call a phone a chocolate bar,” she says. Their journey towards a diagnosis began there, when mild cognitive impairment (MCI) was suggested, before Alzheimer’s disease in 2015. It wasn’t until 2018 that the words “Lewy body dementia” were finally used. “I felt anxious but validated to have confirmation that something wasn’t right,” Sheila says.

Having a diagnosis helped Jim reconcile what had been happening as well. He voluntarily gave up driving, and has since moved into long-term care. They have found connecting with the Alzheimer Society of B.C. helpful, and Jim was able to connect with other people living with dementia in a support group, even if they weren’t struggling with the exact same form of the disease.

For Sheila, it is important people understand that no two people experience dementia exactly the same way. One person living with dementia is still just one person, and each form presents challenges. “With Lewy body dementia there is no baseline,” she says. “It’s more like a squiggly line – meaning it has surprising fluctuations, both cognitively and physically.

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