Two support groups offer a lifeline for people living with frontotemporal dementia

Danielle Barrette-Marcuccio started to notice small changes in her husband, John Marcuccio’s, behaviour seven years ago.

John was still playing competitive soccer, and his doctor continued to give him a clean bill of health. But Danielle noticed that he was having trouble remembering things, and that he wasbecoming increasingly disorganized and unusually sedentary. 

These small changes began to grow, and, on September 9, 2015, John was diagnosed with frontotemporal dementia (FTD) — and was told he’d likely had it for a decade.

FTD FAST FACTS

1. The average age of diagnosis is 60 

2. FTD represents an estimated 10-20% of all dementia cases

3. A hallmark of FTD is a gradual, progressive decline in language and behaviour

FTD often manifests when someone is 50 or 60, 10 years earlier than when Alzheimer’s disease is typically diagnosed. Despite the fact that FTD represents an estimated 10 to 20 per cent of all dementia cases, the disease is under-represented and under-supported in Canada.

As a self-proclaimed “info-holic,” Danielle poured herself into research and tracking clinical trials across North America. She travelled to Chicago in 2018 for a conference about FTD and was shocked to see how much information was available. 

“It really struck me that there’s so much going on in the U.S.,” she says. “There’s volumes of information, they have networks, but there’s nothing in Canada. So, I thought, if I’m investing all this time and energy in finding everything, I’m going to be pooling and sharing that information with my fellow Canadians.” 

Danielle and John began going to monthly meetings of “Between Us,” a young onset dementia support group hosted by The Dementia Society of Ottawa and Renfrew in late 2015. She noticed that after the meeting, participants continued to hang out in order to talk and connect. Inspired by this, she created a Facebook group, also called “Between Us,” as a way to support and connect with those living with young onset dementia beyond the meetings. 

The group became tight-knit, and members were soon meeting for regular vistis like picnics and nature walks.

“You could just sense it from the other spouses and family members that they needed meetings more than once a month,” says Danielle. “So the group did evolve to include monthly dinners for spouses and other events, because there really is a need for that connection.”

Following the success of the “Between Us” Facebook support group, Danielle felt it was mportant to create a group more focused on the disease specifically. She launched the “Canadians Living with FTD” Facebook group last May. Currently, the group has 133 members from across Canada who share Canadian resources, information, innovative ideas, research opportunities and establish networks in various communities while providing support to each other.

Working entirely on a volunteer-basis, Danielle frequently uploads important forms or documents, so people don’t have to go looking for them.

“People have been pretty desperate to find each other,” she says. “Not just in terms of gathering information and figuring out how things work in Canada, but just to connect, share and support one another.”

Since COVID-19 has limited social interaction, both groups have continued to connect online, and the virtual support is useful. 

“We’re a network,” Danielle says. “There’s always someone who can help. Or, as one member Kelly from Ottawa recently stated, ‘You will be so glad you joined this group… even if you don’t share or post much, there is much to learn and a real sense of belonging.’” [ ]

Find Between Us – A Support Group for Those Living with Young Onset Dementia on Facebook.