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Crucial for health system, many caregivers are struggling financially and emotionally, report says

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They come from all walks of life, young and old: millions of Canadians who are unpaid caregivers for aging parents, children with a disability or a sibling with a chronic illness. Yet a new survey reveals many are struggling, often in isolation, trying to fulfil a critical role with not enough support from the health-care system.

Results of the Ontario-based survey of 800 caregivers aged 16 and older, released Thursday by the Change Foundation, paints a picture of people often thrown unexpectedly into a role for which they typically aren’t trained and one that has major effects on their physical and mental health, relationships and career paths.

« Family caregivers provide the vast majority of care that happens in between appointments with physicians or in between hospital stays or different interactions with the health-care system, » said Christa Haanstra of the Change Foundation, an independent health policy think-tank dedicated to enhancing patient and caregiver experiences.

« There’s a lot more health care happening in the home, provided in large part by family caregivers, » said Haanstra, noting that caregivers are often invisible in the health-care system, with their contributions going unrecognized as well as unrewarded.

« We really think about them as the glue that keeps the health-care system together. »

Financial and emotional toll

The online survey, conducted in May by the polling firm Pollara Strategic Insights, found that caregivers overall appreciated the time spent with their loved ones and believed they were improving their lives.

But 61 per cent admitted they took on the role because they believed they had no choice, with many at times feeling trapped, helpless, frustrated and overwhelmed.

The survey found 36 per cent of caregivers felt depressed and 33 per cent were resentful of their role, with almost half overall saying caregiving had negatively affected their ability to have personal time, engage in travel or enjoy a social life.

One-third said they had experienced financial costs due to caregiving, including out-of-pocket expenses, time off work and turning down career opportunities. Eight per cent lost their jobs due to caregiving responsibilities.

« Family caregivers are providing care to almost everyone — siblings, parents, children — and they cover diseases across the spectrum, » said Haanstra, who has a young child and also helps care for both her aging parents and a relative with a chronic illness.

« Obviously, the largest group is caring for people with health-care issues related to aging, Alzheimer’s being one of them, frailty being another.

« But we are also talking about providing care to people with cancer, with disabilities, mental illness, chronic diseases of many varieties and acute illness, post-injury or accident, » she said, noting that an estimated 28 per cent of Canadians over 15 have taken on a family caregiver role.

‘Completely dependent’

One of those people is 25-year-old Stephane Alexis of Orleans, Ont., near Ottawa, who helps his parents care for his younger brother Torence, who has cerebral palsy and is non-verbal.

« He’s completely dependent, he needs help with feeding, changing, even turning in bed, » Alexis said of Torence, 22. « He’s a pretty heavy dude, so there’s a good amount of lifting involved. »

Alexis, who attends a private photographic arts college, helps out after school and on weekends attending to his brother’s needs, but their relationship goes far beyond that.

« He’s completely dependent, he needs help with feeding, changing, even turning in bed, » Alexis said of Torence, 22. « He’s a pretty heavy dude, so there’s a good amount of lifting involved. » (Justin Tang/Canadian Press)

« I love my brother a lot. I love spending time with him. He’s funny, he makes me laugh. »

But Alexis admitted that even being a part-time caregiver comes at a cost. He’s often exhausted, has little time to socialize with friends, and has had to put some life goals on hold.

« I was planning on moving out [of the family home] relatively soon, but I feel like I can’t do that. I can’t leave and just let my parents fend for themselves. »

He’s frustrated there’s so little support from the health-care system: the family receives only 15 hours a week of help from two social services agencies.

« It doesn’t seem like there’s really any funding for home care. They kind of just leave you out there, » said Alexis, who believes his brother’s quality of life is « better at home » than it would be in a publicly funded residence for people with special needs.

« Why not use some of that money that you would be investing in a residence and use some of that money for home care? »

‘I was worn to a frazzle’

For Don Mahood, frustration with the health-care system began when he was trying to get a diagnosis for his wife Mary Charlotte, who had been experiencing worsening memory problems for some years, forcing the registered nurse to give up her job.

« I tried to get her diagnosed with the doctor with difficulty, » Mahood, 76, said from London, Ont.

« You’d get to the doctor and say my wife has some dementia. He would give her a test and talk to her for maybe 10 or 15 minutes and tell me she’s perfectly fine. Anyone with Alzheimer’s, especially in the early stages, can really mask it. »

Caregivers gathered at Dundas Square in Toronto in May to demand better working conditions. (CBC)

Mahood finally got a referral — a year later — to the Aging Memory Clinic in London, where doctors in 2012 confirmed his wife had Alzheimer’s.

For the next six years, Mahood was Mary Charlotte’s 24-7 caregiver, until his wife of more than 50 years was moved to a long-term care facility about a year ago.

« At the end, I had to dress her, bathe her. I had to do everything, she couldn’t brush her teeth, » he said. « When I look back, I don’t even know how I did it myself.

« I was worn to a frazzle. »

Though caring for his wife was a labour of love, the disease put an end to their plans to spend part of their retirement years in Florida. Mahood also had to give up activities such as playing hockey, and his social life faltered as long-time friends dropped by the wayside.

« So my friends became others that were going through it … I would never have survived if I hadn’t belonged to support groups. That really saved my life in a sense. »

Haanstra said such stories, along with the survey results, demonstrate that the health-care system must do more to support caregivers and make it easier for them to access existing services.

« They’re willing to do it, but we can’t just send them home with no support and no information and expect that they’re going to succeed. »

Margin of error was not applicable to the survey findings because of its online methodology, the researchers said. But the margin of error on a representative sample of 800 people would be +/- 3.5%, 19 times out of 20.

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Anglais

‘Business as usual’ for Dorel Industries after terminating go-private deal

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MONTREAL — Dorel Industries Inc. says it will continue to pursue its business strategy going forward after terminating an agreement to go private after discussions with shareholders.

« Moving ahead. Business as usual, » a spokesman for the company said in an email on Monday.

A group led by Cerberus Capital Management had previously agreed to buy outstanding shares of Dorel for $16 apiece, except for shares owned by the family that controls the company’s multiple-voting shares.

But Dorel chief executive Martin Schwartz said the Montreal-based maker of car seats, strollers, bicycles and home furniture pulled the plug on a deal on the eve of Tuesday’s special meeting after reviewing votes from shareholders.

“Independent shareholders have clearly expressed their confidence in Dorel’s future and the greater potential for Dorel as a public entity, » he said in a news release.

Dorel’s board of directors, with Martin Schwartz, Alan Schwartz, Jeffrey Schwartz and Jeff Segel recused, unanimously approved the deal’s termination upon the recommendation of a special committee.

The transaction required approval by two-thirds of the votes cast, and more than 50 per cent of the votes cast by non-family shareholders.

Schwartz said enhancing shareholder value remains a top priority while it stays focused on growing its brands, which include Schwinn and Mongoose bikes, Safety 1st-brand car seats and DHP Furniture.

Dorel said the move to end the go-private deal was mutual, despite the funds’ increased purchase price offer earlier this year.

It said there is no break fee applicable in this case.

Montreal-based investment firm Letko, Brosseau & Associates Inc. and San Diego’s Brandes Investment Partners LP, which together control more than 19 per cent of Dorel’s outstanding class B subordinate shares voiced their opposition to the amended offer, which was increased from the initial Nov. 2 offer of $14.50 per share.

« We believe that several minority shareholders shared our opinion, » said Letko vice-president Stephane Lebrun, during a phone interview.

« We are confident of the long-term potential of the company and we have confidence in the managers in place.”

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Anglais

Pandemic funds helping Montreal businesses build for a better tomorrow

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Many entrepreneurs have had to tap into government loans during the pandemic, at first just to survive, but now some are using the money to better prepare their businesses for the post-COVID future.

One of those businesses is Del Friscos, a popular family restaurant in Dollard-des-Ormeaux that, like many Montreal-area restaurants, has had to adapt from a sit-down establishment to one that takes orders online for takeout or delivery.

“It was hard going from totally in-house seating,” said Del Friscos co-owner Terry Konstas. “We didn’t have an in-house delivery system, which we quickly added. There were so many of our employees that were laid off that wanted to work so we adapted to a delivery system and added platforms like Uber and DoorDash.”

Helping them through the transition were emergency grants and low-interest loans from the federal and provincial governments, some of which are directly administered by PME MTL, a non-profit business-development organization established to assist the island’s small and medium-sized businesses.

Konstas said he had never even heard of PME MTL until a customer told him about them and when he got in touch, he discovered there were many government programs available to help his business get through the downturn and build for the future. “They’ve been very helpful right from day one,” said Konstas.

“We used some of the funds to catch up on our suppliers and our rents, the part that wasn’t covered from the federal side, and we used some of it for our new virtual concepts,” he said, referring to a virtual kitchen model which the restaurant has since adopted.

The virtual kitchen lets them create completely different menu items from the casual American Italian dishes that Del Friscos is known for and market them under different restaurant brand names. Under the Prasinó Soup & Salad banner, they sell healthy Greek options and their Stallone’s Sub Shop brand offers hearty sandwiches, yet the food from both is created in the same Del Friscos kitchen.

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Anglais

Downtown Montreal office, retail vacancies continue to rise

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Some of downtown Montreal’s key economic indicators are heading in the wrong direction.

Office and retail vacancies in the city’s central core continued to climb in the fourth quarter of 2020, according to a quarterly report released Thursday by the Urban Development Institute of Quebec and the Montréal Centre-Ville merchants association. The report, whose first edition was published in October, aims to paint a socio-economic picture of the downtown area.

The survey also found office space available for sublet had increased during the fourth quarter, which may foreshadow even more vacancies when leases expire. On the residential front, condo sales fell as new listings soared — a sign that the downtown area may be losing some of its appeal to homeowners.

“It’s impossible not to be preoccupied by the rapid increase in office vacancies,” Jean-Marc Fournier, the former Quebec politician who now heads the UDI, said Thursday in an interview.

Still, with COVID-19 vaccinations set to accelerate in the coming months, “the economic picture is bound to improve,” he said. “People will start returning downtown. It’s much too early to say the office market is going to disappear.”

Public health measures implemented since the start of the pandemic almost a year ago — such as caps on office capacity — have deprived downtown Montreal of more than 500,000 workers and students. A mere 4,163 university and CEGEP students attended in-person classes in the second quarter, the most recent period for which figures are available. Border closures and travel restrictions have also brought tourism to a standstill, hurting hotels and thousands of local businesses.

Seventy per cent of downtown workers carried out their professional activities at home more than three days a week during the fourth quarter, the report said, citing an online survey of 1,000 Montreal-area residents conducted last month.

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