“A fighter and a doer.” This is how Lorraine Jarvis describes her husband, John, who lives with Lewy body dementia. With persistence and hard work, John had succeeded in his sales manager role, often travelling across the country and managing his own team. In 2013, Lorraine started noticing John struggling with basic tasks and decision-making. There were other behavioural red flags, too: acting out dreams, searching for words and getting lost on his way back to a hotel.

Then, in 2019, a cognitive test initially indicated John was living with Alzheimer's disease. However, the neurologist later confirmed a diagnosis of Lewy body dementia, a disease far fewer people are familiar with.

Lewy body dementia brings its own unique set of challenges – and the diagnosis was difficult for John to digest. John experienced bouts of confusion and movement issues, like the loss of his steady golf swing. For a brief time, Lorraine felt she could not speak to others or find help because John did not want others to know. As soon as Lorraine could open up to share both her stress and what she and John were experiencing, she felt a huge weight lift off her shoulders.

As they continue their dementia journey, John and Lorraine show determination and resilience.
"You would expect someone with so many frustrations because of the disease to be angry,” Lorraine says. “But I am not getting that from him. Instead, I am getting repeated efforts to make things work. John is so determined to maintain as much independence as possible that he will spend 20 minutes trying to complete a simple task that used to take one or two minutes.”

One of the outcomes of the COVID-19 pandemic is that the Society created a virtual support group specifically for people caring for someone living with Lewy body dementia. Lorraine was one of the first participants to join, and since then, while receiving the help she needs, she has provided valuable support to other group members based on her experiences.

“I find it very helpful,” she says. “It is reassuring, grounding and practical advice. It is very valuable.”
Lorraine is happy to share her understanding about dementia, particularly Lewy body dementia, which remains lesser known than Alzheimer's disease.

Besides hiking and gardening, Lorraine finds that music relieves her stress and brings her joy. "There are places of sanctuary and calm in this journey. Know that you will find them. There are rough spots, but there are moments of peace."

Join Lorraine on Sunday, May 28 for the Delta IG Wealth Management Walk for Alzheimer's. Together, we make memories matter.