Living the Dementia Journey, an award-winning training program for those who support people living with dementia, has been adapted for an important new audience: teenagers and young adults. “Intergenerational programs will increase opportunities for youth and older adults living with dementia to connect, and bring generations together,” says Neb Zachariah, project manager at The Schlegel-UW Research Institute for Aging (RIA), in Waterloo, Ont.

The youth program is being developed by the RIA’s Supporting Inclusion through Intergenerational Partnerships, a five-year project to promote social inclusion among community-dwelling older adults living with dementia and their care partners in the Waterloo region. The training, designed for participants ages 14 to 25, is still in its pilot phase, with larger enrolment expected in September 2021.

There’s just so many more people living with dementia in our communities and to be able to arm our youth with understanding, it can only make the world better

– Barb Sutcliffe

Zachariah says that while older adults living with dementia have a lot to contribute to communities, social isolation can make it challenging for them to share their experiences and knowledge. At the same time, young people are looking for ways to be meaningfully involved in their communities.

“[The youth program] addresses the needs of both populations in a really helpful and mutually beneficial way,” she says.

LIVING the Dementia Journey was created in partnership with the Murray Alzheimer Research and Education Program (MAREP), Schlegel Villages and the RIA in 2013. Barb Sutcliffe, a registered nurse and senior manager of sales and marketing at the RIA, says the program was first developed to make sure the voices of people living with dementia were heard.

“There really wasn’t any program out there that was hearing that voice and sharing it with people who were providing support for people living with dementia,” Sutcliffe says.

The original program is offered two ways: a one-day interactive overview workshop and an advanced train-the-trainer workshop for people interested in becoming facilitators. Participants, including family care partners or those providing support at long-term care or retirement homes, gain awareness and understanding of what dementia is, how it progresses and its impact.

They also learn strategies to better communicate with, care for and listen to people living with dementia.

More than 2,350 people have completed LIVING the Dementia Journey, including those who take the two-day facilitator workshop and then continue to train team members in their organizations.

As well as content found in the original program, the youth program includes new material on how young adults can work with someone living with dementia through volunteering or future career opportunities.

“It really is about equipping youth to engage with older adults. To see the value of working with [them], and to give them the confidence that they need to do it because we understand that there might be some apprehension or just misconceptions about older adults and people living with dementia,” Sutcliffe says.

To adapt LIVING the Dementia Journey, the RIA worked directly with young people. A group took the existing workshop in February 2020 and shared feedback. Participants included Lucy Hur, a 17-year-old high school student from Waterloo. She enjoyed the experience so much that she’s stayed involved by continuing to review content and share feedback and ideas.

“I really learned a lot,” Hur says. “The program makes it more accessible for young people to be aware of what dementia really is.”

Modifying the program for youth participants means a wider audience receives the same valuable training. The course has also been transformed to be delivered online, due to COVID-19 restrictions.

“There’s just so many more people living with dementia in our communities and to be able to arm our youth with understanding, it can only make the world better,” Sutcliffe says.

The Supporting Inclusion through Intergenerational Partnerships (SIIP) project is funded by the Government of Canada's New Horizons for Seniors Program.