Facing the aging crisis, who is helping caregivers?

Sherri Ferguson runs 16 hours a day.

In North Vancouver, BC At home that she shares with her elderly and sick parents and her teenage son, Ms. Ferguson begins her work day at the computer at 6 am. She walks her dog and returns at 8 am to offer coffee to her 77-year-old father, who suffers from chronic diseases. pain, and her 76-year-old mother with diabetes and early stage Alzheimer's disease. The girl checks her mother's blood sugar, gives her medicine and transfers her to a wheelchair for breakfast.

At 9 am, Mrs. Ferguson drives her son, who has recently been diagnosed with schizoaffective disorder, to school. She then goes to Simon Fraser University, where she heads the Environmental Medicine and Physiology Unit. The home health aides that Ms. Ferguson has arranged arrive at noon and prepare lunch for her parents. After work, she prepares a healthy meal for the family, walks the dog, dresses her mother for the bed, records her blood sugar and gives her insulin. And then, the finish line: cleaning and laundry.

Ms. Ferguson is part of a large army of Canadians who feel left out to care for their elderly parents while balancing the demands of everyday life. "I am very stressed about meeting my own expectations for the quality of my care," said Ferguson, 50.

According to the latest data from Statistics Canada, almost half of the population is occupied by a family member or elderly friend, sick or disabled. A 2009 study found that caregivers provided $ 26 billion in free health care workers. More than half of Canadian caregivers have been caring for a loved one for more than four years and many of them have faced significant expenses while struggling in their careers: 43% lost their jobs, 15% reduced their working hours and 10%. promoted or new job, according to Statistics Canada. Women are particularly challenged because they still have to take on most of the day-to-day tasks.

Seniors are expected to account for one-quarter of the population by 2036. As advances in health make it easier for people with chronic conditions to live longer, respite care remains costly and uneven and more patients prefer to age they, the burden of caregivers will only worsen this country.

"With little or no training, they are supposed to provide medical and nursing home care, navigate complex and long-term care systems, and serve as alternate decision-makers," said the Mount Sinai Hospital geriatrician. Nathan Stall, in a previously published editorial. month in the Canadian Medical Association Journal calling for stronger support for health, workplace and finances for family caregivers. "We need and can do more to recognize and help caregivers bear this burden."

As the country faces an impending aging crisis, governments have begun to signal that family caregivers are a priority. In Quebec, Marguerite Blais is the first minister to have the mandate to lighten the burden of caregivers. A provincial strategy is being developed to provide caregivers with more recognition, support and respite. Health care is also growing: a growing movement of caregiver-friendly approaches sees the deployment of new national training for hospital staff, doctors, nurses and pharmacists on how to be more compassionate and help caregivers whose family members are ill. From coast to coast to coast, new organizations and online communities are preparing to teach Canadians how to manage the day-to-day responsibilities of caring for the elderly, as well as lines of assistance between Peers, social media platforms and support groups comfort caregivers who are struggling with stress and burnout. .

Although experts say that a national strategy is needed, these new programs offer a plan for the future, putting caregivers at the forefront in medicine while protecting them themselves.

"It's a case of loving and caring for someone – not a rewarding one," said Janet Beed, an independent health care consultant, who has prepared a report for 2017 strengthening caregiver support in Ontario. "How are you doing this? That hit us and we have to find a way to solve it."

Partners in care

Cathy Proll was so keen on bringing her elderly parents closer that she sold her family's home and bought a new home in Brantford, Ontario, renovated with a beautiful apartment. Today, Mrs. Proll, her husband, and their two children share space with her 84-year-old father with depression and her 82-year-old mother, who suffers from memory loss. several falls.

Some family meetings with the health system have left Mrs. Proll discouraged. "Advocacy in this area is the most exhausting," said Proll, a 59-year-old general manager with a non-profit organization.

The most panicked night occurred when Mrs. Proll's mother – who suffers from hearing loss and confusion caused by painkillers – mistakenly thought that she was being transferred from the hospital to a hospital. retirement home, this because no one had involved Ms. Proll before conversation with the staff.

"The system is not configured to allow a health care provider, a doctor, a nurse or anyone to interact or spend time with the caregiver. That's not what they're fighting for or being given time for, "said Christa Haanstra, head of strategic communications at the Change Foundation, an independent think-tank on health care.

To address this, the Foundation is working to bring a more user-friendly approach to caregivers in various health care settings in Toronto, London, Cornwall and Huron and Perth Counties in Ontario. Four partnerships will each receive grants of up to $ 750,000 per year between 2017 and 2020 from the foundation, which operates through an endowment fund of the Ontario Hospital Association.

Physicians, nurses and other providers participating in the program are trained in how to build closer relationships with caregivers of their patients. Official visiting hours are eliminated and exit planning is improved. Accompanying persons wear identity badges and provide notebooks detailing the medical history of their loved ones, equipment they can carry to various appointments, without having to remember all the details themselves.

Pat Langlois felt isolated and neglected as the caregiver of her husband, George Langlois, 82, after having a stroke 12 years ago.

"Who were I going to talk to? There was no one there. So keep that in yourself, "said 80-year-old Langlois of Clinton, Ont.

Today, she is benefiting from the Huron County Caregivers' Change Foundation programs: she carries the loin, holds a binder with her husband's medical records and goes to a support group at her local library library. .

"It's a big relief," said Ms. Langlois. "I have never been recognized before …. Nobody ever told me, "Hi, Pat, how are you?" I now have a friend who phones me and asks me the question. The first time she told me that, I cried.

Another new project launched last month at the national level aims to make pharmacies more user-friendly for caregivers, with voluntary online training for pharmacists. Launched as a six-month pilot project last June in Quebec, the program was led by Huddol, a Montreal-based online support network based in Montreal, and pharmaceutical company Teva Canada, which funded this initiative.

"One of the things we learned from talking to caregivers and pharmacists was that … the relationship did not exist," said Mark Stolow, founder and CEO of Huddol.

Pharmacists taking the accredited training will receive a handbook for caregivers including a checklist to bring to a pharmacy; a glossary of terms used by health care providers; a stress self-assessment tool for caregivers and links to provincial support agencies and federal benefits.

Stolow sees the project as part of a gradual shift in health care from no longer treating caregivers as resources to value them as partners to invite "at the center of the circle of care." ".

Navigate the waters

Rhonda Cunning of Ottawa lives with her 78-year-old mother, who had a stroke eight years ago, and cares for her mobility. With a demanding 45-hour work week as a post-production manager and two children to care for, Ms. Cunning hired home support staff, although she soon came back in case 'emergency.

"We are doing what we can to make it work, but it does not really work," said Cunning, 46.

Ms. Cunning believes that the responsibility rests entirely on her shoulders: her brother lives in another city and her husband often goes to work. When she is truly lost, she fosters information from girlfriends who also feed elderly parents. "People need help navigating the system," Ms. Cunning said.

Canada's health, home and community care systems "remain fragmented from an organizational point of view, making them difficult to access," according to a report published in 2018 by the University's National Institute on Aging Ryerson. A common complaint of overworked caregivers is that they do not know where to look for help because it is not grouped together in one easy-to-use place.

"The information may be there, but you have no way of knowing where to find it. You are stuck, frustrated and overwhelmed, "said Ms. Beed, Chair of the Ontario Caregiver Organization's Board of Directors.

Launched last year, this provincially funded non-profit initiative brings together a wealth of resources for caregivers. This includes a website that allows people to type in their postal code, the type of help they need – from transportation to personal support workers – and find out what's close to home. The organization follows similar patterns in Nova Scotia, British Columbia, Alberta and Quebec.

For caregivers who help their relatives and friends with dementia, the Toronto Reitman Center at Sinai Health System and Ontario Alzheimer Societies now offer in-person and online programs that provide psychological support and skills training. behavior management related to dementia. Funded by the province, these programs teach caregivers how to overcome difficult situations at home and communicate effectively with loved ones at the same time the disease is ravaging.

Ms. Beed believes that these types of education centers are increasingly needed.

"Our generation is planning to treat very complex diseases in our parents, siblings, children or partners," she said. "The complexity of demand has evolved over generations. It's not like we have a lot of models. "

Of equals

Our current way of providing care weighs heavily on those who care for it, as a series of Canadian research clearly shows. More than half of caregivers felt anxious and 36% had depression, according to a 2018 survey of 800 Ontario respondents by the Change Foundation. Half felt that their personal time and friendships had suffered. Many had financial problems, some quit their jobs or were forced to leave their jobs by indifferent employers. others postponed their studies to take care of older members of their family.

Canadians juggling full-time jobs for unpaid seniors and their parenting responsibilities told The Globe that they were exhausted, overwhelmed, and guilty of not doing enough at home or at work.

"This is the fight that many women face: you want to dedicate 100% of your attention, love and commitment to everything you do," said Gabriela Gonzalez, a Toronto-based public affairs consultant. 30, whose mother has been busy with his father aged 64 before his death this winter.

"You put a shell and you harden it and go do it, but when you take a moment to think about it, it's hard," said Ms. Gonzalez, who has a year-old daughter and a daughter-in-law. teenage son.

For the exhausted caregivers who observe the harsh everyday reality of helping the people they love grow old, it is invaluable to talk to others who know what they are going through. Peer support for caregivers is growing in this country, and an organization called Caregivers Nova Scotia is leading the way. With a membership of 6,500, the provincially funded nonprofit is made up entirely of people who have cared for their family or friends. Paid employees provide 25 in-person Peer Support Groups per month in Nova Scotia, as well as individual telephone consultations.

"The first time a caregiver calls us, he is often in crisis," said Executive Director Angus Campbell. "They do not know where to go and they feel lonely."

Campbell said Nova Scotia's doctors are increasingly making "social prescription", sending frayed caregivers to the peer support group to preserve their well-being. Beginning last fall, the organization launched eight caregiver retreats across the province, with funding from the federal government. One-day retreats combine educational workshops, peer networking and personal care: art classes, massages, manicures and footbaths – a treat that caregivers give up when they're about to 'breast-feed.

"It was a time when I was leaving, they had the day off," Campbell said. "People are learning that they are not alone."

Peer support for caregivers is also sprouting online. The Huddol social networking platform allows caregivers and professionals to exchange support and social advice. Launched in late 2017 with support from the private sector and money from the federal government and APPUI, a Quebec funding initiative for caregivers, Huddol now has about 12,000 members.

"You can come on the network, ask for help and the network will gather around you," said Mr. Stolow.

Beyond recognition

The innovative programs that are being developed across the country go beyond praising caregivers for their quiet sacrifices: they point to a shift from patient-centered health care to family and community-centered care. Experts say that fully integrating caregivers in this way into medicine is essential.

"We have been talking for too long about caregiver recognition," said Stolow. "We have to start being more practical."

To this end, Quebec has appointed Marguerite Blais as the Premier responsible for Seniors and Caregivers. Blais is writing the province's first policy to ease the burden of caregivers. During consultations last December, she heard 200 caregivers and experts clearly explain their priorities: more respite homes, more psychological and social support, and more financial assistance for Canada's parental leave projects.

"We take the caregiver for granted," said Ms. Blais, who took care of her husband before her cancer death in 2015.

Quebec is expected to release a caregiver policy by the end of 2019, with a strategic plan to be released in the spring of 2020. The province will also launch a "caregiver observatory" this spring to gather stronger data on this issue. growing cohort. Québec's efforts are based on Manitoba's "Recognition of Caregivers Act, 2011", which recognizes caregivers' contributions to society but does not create legally binding obligations.

"It's so important for a lot of people," said Blais. "Our population is aging and in Quebec, things are going very fast."

The next frontier of care for the elderly: men

On paper, it appears that Canada is moving towards gender parity: 54% of women and 46% of men identify themselves as such, according to the most recent Statistics Canada data. But a closer look reveals greater gender disparity.

According to Statistics Canada, the proportion of women who cared for an adult family member or a friend on a given day was three times higher than that of men, according to the agency's report. In 2018 women's and men's time use in this country, women caregivers carry much more tedious daily tasks than men and were twice as likely as men to provide personal care. While men tend to do episodic work, including outdoor maintenance and finance, women often end up with unattainable tasks: baths, bandages, medications, food, housework, and transportation. appointments to the doctor.

No time-use study captures the invisible work that caregivers do all the time: worried multi-tasking, daily visits with older parents to offer moral support, seamless planning for each adverse scenario . .

"The cost and consequences of caring for an elderly family member are high and higher for women than for men, and even higher when there is no support for the workplace, the community or the family to help them, "said Nora Spinks, Executive Director of the Vanier Institute of the Family in Ottawa.

For the past 15 years, Kory McGrath has been caring for her 88-year-old grandmother, who has Parkinson's disease, manages four young children, and works full-time as a midwife in Bowmanville, Ontario. Today, 44-year-old McGrath is holding weekly dinners and making all of her grandmother's business, banking and medical appointments available. She takes care of everything that is as the elder brother of the family.

Although she finds the experience "personally rewarding," Ms. McGrath and other caregivers say the problem of elder care is that it is ultimately a problem. Unpaid work problem persisting throughout women's lives, from caring for children to housework to emotional work care of life. "There is definitely this unpaid resentment," Ms. McGrath said. "You have days where you want it, but it's still on my shoulders."

Society is deeply convinced that care is the responsibility of women. Older parents often insult these expectations with their daughters: over a third of caregivers said that sick people caring for them are not willing to accept help from anyone else. the 2018 report of the Change Foundation. In addition to this expectation, family members, including women in chief, are often reluctant to identify themselves as "caregivers": that's what you do for the people you love. By not recognizing their own work, these caregivers remain undervalued socially and economically.

Experts argue that we need a broader discussion about these gender roles as they deter men from taking steps to provide care. Huddol's Stolow said it's time to think about how we can help men feel more comfortable about vulnerability – what you are when you heal people. "The care can be very intimate, very close," he said.

Mr. Campbell, of Caregivers Nova Scotia, said that more and more men were starting to call their helpline and that more couples were attending support groups together, as opposed to single women. "We are seeing more and more men getting on the job," he said.

Mr. Campbell was a caregiver for his late partner after he became a paraplegic. "I did everything and I do not come from the world of health, I am a computer scientist," he said. "But now I can do catheters, I can give injections and I change an adult's diaper. I had to learn to do that.

Even in a future where women and men will take on this difficult job more equitably, experts warn that lay caregivers will need more help from the outside world to house their elders in the years to come.

"It's a reality and it will not go away. We can either embrace it and strategize around it, or try to ignore it and hope it disappears, "Spinks said. "We will all be caregivers and care recipients at some point. We must find how to do this well. "