Writer Valene Campbell is part of the sandwich generation. She is the mother of a two-and-a-half-year-old girl and she has moved back home to support her parents because her mother is living with dementia.

Her mom and daughter are the inspiration for “The Amazing Zoe and Grandma’s Memory Box,” one in a series of books that promote diversity in children’s literature. The touching story is designed to help kids understand Alzheimer’s disease and find ways to create a rapport when a grandparent’s memories are fading.

In her own family, Campbell says her mother and daughter share a special relationship.

“They just like to hang. They like to have their quiet time in her room. My mom spends a lot of time in her room now being withdrawn because of her condition but my daughter is THE person, the only person, who can get my mom out of those moments of withdrawal. So it’s nice to see. They laugh together. They play together.”

The COVID-19 pandemic has accelerated her mother’s decline, Campbell said. Previously her mother was very social and loved her church community but she has not been able to participate as much lately.

Stigma associated with dementia is still prevalent, she says, and she wants to advocate and spread the message that cognitive decline is not inevitable as we get older and that there are ways to reduce our risk.

“I want to help people understand the disease a little bit more, and by educating them and fostering understanding, the stigma will begin to dissipate.”

Campbell’s own role as caregiver has been “tough beyond measure,” she said, and she wishes that our society, in general, would offer greater understanding and support for family caregivers.

The Mississauga resident appreciates Baycrest research that aims to improve brain health and increase our understanding of dementia. She encourages more people to get involved so their lives and health experiences will be better reflected in clinical trials and research results.

She was delighted to see so many interested young people at Baycrest’s inaugural A Walk for the Ages fundraiser last year, where she had a booth set up.

“It’s great to have younger faces as part of the conversation. It will help change the idea of who is affected by dementia, the various age groups that are affected, and will help put a focus on what the family goes through.”