canada's health care system increasingly relies on unpaid care

by: elise stolteunpaid care isn’t free.when a neurological disorder rendered marion kutzer’s husband temporarily immobile, she became his full-time caregiver, almost without a second thought. but the cost was to give up her job as a marriage commissioner.betty minor paid in sleepless nights — she took on a burden of anxiety, waking to listen every time her husband with multiple sclerosis took a sip of water. others describe paying in resentment, a black depression that grows when caregivers are isolated and overwhelmed, when care freely given becomes too much.as more seniors age at home, experts say canada’s health care system increasingly rests on unpaid labour given by millions of family members and friends, and they’re realizing that this is not sustainable.

a peek into a dystopian future

the hundreds of edmonton and alberta residents who wrote in for the edmonton journal’s focus on seniors and covid-19 this winter illustrated that fragility clearly. many were caregivers who wrote of the cost in time, including hours given to research and paperwork to figure out a complex public support system.they wrote about the challenge that comes when those receiving care lose mental capacity and can lash out in anger. several spoke of trying and failing to juggle the demands of caregiving, young families and/or work, of losing their jobs and struggling to make ends meet.this is the forgotten side of the push to age in place. home care is there to help, but is often understaffed and therefore inflexible or just not enough. when covid-19 hit, it was a peek into a dystopian future. stretched resources evaporated. some families report going without baths and other help for weeks.“people making the policies have no idea what this involves,” said paul kutzer, reflecting on the toll his disease had on his wife marion. “that’s the downfall of this whole system.”but although this is a story of pain, it’s also a story of hope.researchers are increasingly tracking this problem. the edmonton zone of alberta health services has started testing new efforts to better support those at risk of burnout. just like in long-term care, they hope the pandemic will prove to be a much-needed catalyst for action.first, the story in numbers.before the pandemic, more than 115,000 albertans spent more than 20 hours a week caring for an adult family member or friend. many more give a few hours a week. a 2019 university of alberta analysis of statistics canada data found one in four albertans are caregivers and they’re working an average 8.4 hours a week. it’s worth $5.8 billion, if all of that was paid for at minimum wage.even then, caregivers talked about the struggle to juggle work and family demands with the challenge of caring for parents, spouses and adult children. more than 40 per cent missed days of work to do it.but when covid-19 hit, the burden increased dramatically. home care cut all but essential services during the first wave, leaving families in the lurch. it was better during the second wave, but still, most day therapy programs that provide structure and relief have only partly re-opened, if at all.we don’t have data from the second wave yet, but in the first wave, nearly half of those caring for someone within their own home told university of alberta researchers they added 20 to 40 or more hours of personal care each week. between june and july 2020, researchers surveyed 600 caregivers. those caring for someone at home also saw anxiety levels rise the most, with the rate of those suffering from moderate to severe anxiety doubling to more than 80 per cent.

love and duty

many people slip into a caregiver role slowly.marion described being happy to take on the work as a matter of love and duty when her husband paul was diagnosed with chronic inflammatory demyelinating polyneuropathy in 2004. though he recovered from the initial bout of the disease, paul relapsed in 2017. both times, he gradually lost the use of his limbs, but being at home was an incentive for him to work hard at therapy in order to stay there.“if i wasn’t as strong and healthy as i am, he would have been in a long-term care facility. and if he relapses again, that’s where he’ll have to go,” said marion.

she woke up to her predicament only after helping to dress, move and support paul became a full-time job. it was impossible to juggle this, his medical appointments and her work, which had been up to 120 weddings a year. she let work go.they connected with home care so she could take 1.5 hours off per week. but even with that help, her world shrank. just before covid-19 hit, she realized the people she relied on most for social interaction were the nurses she saw at paul’s apheresis clinic weekly in calgary.as for the pandemic? “oh, when that hit i thought: ‘this is no different. welcome to my world.’ in an odd way, it was comforting.”researchers and health officials are only now realizing how tenuous the situation is for stressed families, said bonnie-jeanne macdonald, researcher with the toronto-based national institute on aging. her background is in economic modelling around canada’s pension plan, where the risks are relatively easy to quantify and yet have been studied in depth.in contrast, elder care is full of unknowns. it’s outside the federally-regulated health care system, which means little national reporting or standards. and for years, no one quantified the risks to unpaid care, which includes the fact that demographic changes mean fewer caregivers will be available.there are smaller families, few marriages/more divorces and more children moving to other cities, which means fewer potential caregivers to share the load, said macdonald. but the number of people over 85 is expected to more than triple in the next 30 years and people are also trying to live at home longer.many more canadians will want or feel duty-bound to take this on, regardless of the personal cost. when macdonald did that microanalysis, following the many different trends affecting the sector, she projected the time demands on individual caregivers will go up an average 41 per cent, to 415 hours per unpaid caregiver per year in 2050. that’s up from the 290 hours on average each unpaid caregiver was investing before the pandemic.“you can’t just ignore this stuff. … this whole attitude of ‘well, someone does it for free so we can ignore it’ just doesn’t work. because they’re not going to do it anymore,” she said.“the pandemic has given us a very realistic portrait of what the future will look like if we don’t start to think through more solutions,” she said. we need to “care for seniors in a way that bends the cost curve but also is conscientious of the responsibilities that are being put on families. we know now there’s a problem and we’re only at the tip of the iceberg.”

what would make caregiving sustainable?

betty minor is working on her mental health, which suffered when her breaks outside the house were cut off during the pandemic. she struggles with the burden of feeling responsible for her husband colin but is now using earplugs to sleep and to mentally give herself distance. she draws strength from his dogged determination to preserve independence.but they both worry about cost.colin’s multiple sclerosis will keep advancing. what will happen when he loses upper-body strength and can’t transfer himself into the wheelchair anymore? already, they’re looking at an $8,000-bill to renovate the bathroom so he can use the shower, said betty. “our investments have to last us into our 80s. but that doesn’t take into account hiring a nurse or any special equipment that he needs.”

for heather reiter, a relatively young caregiver in sherwood park, the challenge is time and guidance. her husband brent suffered a stroke following a medical procedure six years ago. he was just 41; their daughter was six.medical staff took charge when he was in intensive care and later through months at the glenrose rehabilitation hospital and at a second facility in ponoka. but after 16 months, when he came home, it was suddenly all on heather.brent is still mostly non-verbal, can dress and feed himself but rarely remembers dates and times. it’s heather’s job to research support programs, arrange transportation, remind him of every appointment, in addition to filing the role of sole bread-winner, managing the household and parenting. when the pandemic hit, day programs were cancelled; she worries about him stuck at home on his own, getting depressed, and struggles to help.“at times i feel trapped because i know that if i were to step away, he’d end up in a home somewhere. he’d hate that,” she said.long-term, perhaps a more hands-on case manager would help, she said. “be my secretary. you manage the schedule, you set up the zoom calls, you communicate with brent when these calls are going to be. booking his mobility bus. … even if that could be pushed to someone else, it would take so much weight off me.”

part of a larger effort

those running the system know it has to change.in 2019, health officials in the edmonton zone of alberta health services decided to test whether giving families significantly increased support and more flexibility would actually save money long-term.roughly 20 to 30 per cent of the people admitted to long-term care have similar care needs to people still being cared for in the community. so for the pilot project, four home care teams identified 66 clients where it was clear the caregiver was under heavy stress and likely to give up soon, which would mean placing their loved in institutionalized care.a case manager met with each one and offered three things: significantly increased respite care of several hours a day, if needed, so the caregiver could work, shop or attend to other duties; funding for activities not normally covered by home care, such as cooking, cleaning, transportation, shopping and laundry; and flexible booking arrangements. rather than having to book through ahs, clients could hire whoever they wanted and simply get the cost reimbursed.

that last piece meant the client could build an ongoing relationship with someone who understood their needs, rather than repeatedly explaining the situation to a new ahs-contracted health care aide.the results were dramatic, said sharon anderson, university of alberta research co-ordinator for the project, who presented the findings to healthcare excellence canada. they found 57 of the 66 people most at risk of moving to a facility were still at home by the end of the year.the program cost $37,600 per year per client. but costs to the health care system for one designated supportive living or long-term care bed are much higher, $46,000 and $75,000 a year respectively. even calculating with the lower amount, supporting the caregiver saved the government $486,000.more important, caregiver health and anxiety improved, said anderson, calling the results “excellent” and pointing to one caregiver whose high blood pressure returned to normal.the full impact of the pilot project is still being evaluated and it’s not yet clear exactly what cost and impact could be expected from scaling up. but the third element — allowing a client to book directly with a professional and get reimbursed — is now an ongoing program option being rolled out in the edmonton zone.the same university of alberta/ahs team also built new continuing education modules online at caregivercare.ca for doctors and acute care staff to help them recognize family caregivers as critical to the health care team.within ahs, experts have been working for years to enhance home care rather than keeping a narrow focusing on facilities, said dr. james silvius, provincial medical director for seniors health, in an interview. it’s a culture change that requires multiple partners at the table, but the pandemic has created a sense of urgency.“the pandemic has given us pause and our institutional care system is being looked at much more critically. there’s a lot of people who now are saying, ‘i’ll never go into a care setting’ because of all the publicity around what’s happened,” he said. “we are trying to bolster community resources.”estolte@postmedia.comtwitter.com/estolte

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this article is part of groundwork, an edmonton journal pilot project in engagement journalism that saw more than 700 seniors, caregivers and family members contribute through surveys and emails this winter to help shape our coverage. this was meant to ensure our reporting was focused on issues that matter most to our community, building trust and opening the work of journalism to new voices and insight.read more at edmontonjournal.com/groundwork, help us evaluate the project. our final series on covid-19 and continuing care runs tuesday through friday this week. as a final event, join us live for a q&a at noon may 4 with caregivers alberta.