David’s journey: Becoming a lived experience partner

April 14 - 20, 2024, is National Volunteer Week and the theme is "Every moment matters." As as organization that was started by volunteers, the Alzheimer Society of B.C. is proud to celebrate every volunteer and their unique contribution to improve the lives of people on the dementia journey. With the number of British Columbians living with dementia riding, we need the support of volunteers more than ever.

Lived experience partners help spread awareness about dementia by sharing their personal stories and perspectives. Opportunities for meaningful engagement invite people directly affected by dementia to actively contribute to our work.

David Nickel is one of our new lived experience partners. He lives with his wife in Chilliwack, in a house that overlooks the river. He loves to play golf and visits his local gym four or five days per week. David was diagnosed with dementia four years ago. Shortly after his diagnosis, he connected with the Society and joined a support group for people living with dementia.  

“The group was very useful,” David says. “It helps to share what I’m going through.”

Recently, David decided to become more involved with the organization, so more people could learn from how he is navigating life while living with dementia. In January, he was one of four panelists featured in a lived experience webinar. Participants shared how they live life to the fullest on the dementia journey.

“I’ve always liked to share,” David says. “Telling my story gives me a way to contribute and connect with other people in the dementia community.”

When people with lived experience of dementia share their stories, it reduces stigma and discrimination and helps people on the dementia journey feel less alone. Lived experience partners may be invited to participate in committees, webinars, advocacy opportunities and more. Without the voices of lived experience partners, the Alzheimer Society of B.C. does not have firsthand knowledge of what it’s like to live with the disease or know how to best support the people who are walking the journey.

David is looking forward to finding more ways to participate as a lived experience partner, which might include sitting on a committee or an advisory position.

“I certainly don’t mind telling my story when somebody wants to listen,” says David. “I try to have a good sense of humour about all of it. If I forget to play a few holes while playing golf, I get a better score!”

The Alzheimer Society of B.C. is grateful for the time and expertise that David shares with us and the broader dementia community.