Caregivers in and around Niagara-on-the-Lake say support for those caring for sick and dying loved ones is fragmented.
Paul MacDonnell, who lives in Garrison Village, cares for his wife, Debbie, who has Alzheimer’s disease. He says she cannot be left alone, making it difficult to leave home for basic errands.
To provide him with assistance, MacDonnell uses Ontario Health atHome. This provincial agency funds in-home personal support workers, adult day programs and up to 60 days of residential care.
However, he says he’s experienced a lack of continuity with the agency.
“I have, over the last four years, had over 200 personal support workers come into this house,” he says.
This is an issue not only for his wife, he says, but for others with Alzheimer’s, who may be unsettled by unfamiliar faces.
He’s not alone: Judith Auty of Virgil cared for her husband, Gord, who had dementia, before his death in February at the age of 92.
“We had been assigned people who came and went, and then maybe they’d come back, maybe they wouldn’t, maybe they’d be replaced by someone else,” she says.
“He couldn’t keep track of who these people were or what they were doing.”
According to the Ontario Caregiver Organization’s Spotlight Report from 2025, 4.2 million Ontarians provide care to a family member, partner, friend or neighbour, and it’s expected that number will climb to 6.5 million by 2030.
This brought Frances Gregotski and Ron Gayadeen, members of the Niagara Respite Care Study Group, to NOTL in February, to tell council about plans to grow its volunteer-led network that provides temporary relief for caregivers.
The group, founded two years ago, is partnered with Heart Niagara and the Ontario Niagara Health Team.
Gregotski says NOTL has the best demographics to test the pilot project’s model.
“We have met with so many people, doctors and organizations within the region, and everyone says, ‘We need this, we need this,’” she says.
Gregotski told The Lake Report that Lord Mayor Gary Zalepa supports the initiative and that the group is exploring ways to co-ordinate services across the region.
“The caregiver support system in Niagara isn’t broken. However, there are many areas for improvement,” she says.
She identified several of them: co-ordination between non-profit and for-profit providers, hospital discharge support, awareness of caregivers’ needs, access to information, employer support for working caregivers, cultural considerations and persistent service silos.
Sandra D’Alessandro, a personal support worker and CEO of Sandra’s Home Health Care Services, says about 15 per cent of her company’s work involves caregiver respite. She’s also on the board of directors of the non-profit Connecting Care Niagara.
The system, she says, is strained by a shortage of workers.
“We are in such need of personal support workers,” she says.
“We’re not registered, and therefore they’re making between $19 an hour and maybe $23 an hour at a private agency. And for the work they do, it’s just not there.”
Location can also be an issue: D’Alessandro, who’s based in St. Catharines, says it can be difficult to attract workers to NOTL due to travel costs.
“I’m offering $5 more per hour just to beg staff to work right now,” she says.
Ontario Health atHome delivers its services through for-profit and non-profit companies. MacDonnell says this model can lead to inconsistency: workers may cancel shifts, and replacements are not always available.
“You’d think that they would just fill in another personal support worker — well, no, because they’re all working for 12 different companies,” he says.
The work caregivers do is a significant source of stress. The Ontario Caregiver Organization’s report states that almost half of caregivers, 46 per cent, feel lonely, isolated and depressed and 60 per cent feel burnt out.
Tamara Souter of Old Town spent years caring for her mother, Barbara Woronowicz, who has colon cancer and dementia, while also working from home (Woronowicz now lives in a long-term care home).
Souter says the inconsistent scheduling and unpredictability she experienced trying to use personal support worker services made an already stressful situation worse.
“I had a nervous breakdown,” she says. “I literally could not manage trying to manage them and trying to do my own work and trying to function as a human being.”
The Ontario Caregiver Organization’s report indicated that one in four caregivers say they need respite care for their family member, loved one, friend or neighbour so they can have a break.
Gregotski says she hopes the group’s pilot project will help fill in the gaps in care needed.
“All the steps forward will not only help caregivers, but there will also be positive benefits to our health-care system, including financial savings, efficiencies within our hospitals and fewer requests for long-term care,” she says.
A spokesperson for Ontario Health atHome, in response to an inquiry about inconsistencies some caregivers say they experienced with their services, says the organization encourages patients to speak with their care co-ordinator to help resolve concerns.
“Issues, when reported, are promptly and carefully reviewed with the patient and service provider organization to ensure ongoing quality of care provision is achieved,” the statement reads.
In the meantime, some in NOTL are stepping up to lend an extra hand.
Tom Hodges, a member of the Respite Care Study Group who lives in St. Davids, says community-led efforts already support residents in need, with neighbours helping neighbours.
He talked about Case Bassie, who had a heart attack while on his bicycle in April 2019. He fell into a ditch, ingested water and had to be revived by a Good Samaritan who gave him CPR.
He suffered a brain injury, which kept him in hospital until October 2019. He required 24/7 care after he was released. He died in February 2020 after a fall.
Hodges says Gayadeen led an effort to help Bassie and his wife, Brigitte. In the end, what happened to Bassie brought the community together, he says.
“Suddenly, you know, we begin to realize that it’s a pretty complex issue.”
