April 6, 2021
Written by: Annamarie A. Fuchs, Creator. Partners in Health | Conversations
At our youngest we are most pure. At our oldest, we are most experienced. But at both, we’re the softest at heart. Maybe that’s why those ages get along the best. It’s somewhere in the middle that we lose ourselves.
On March 30, the Canadian Institute for Health Information (CIHI) reported that Canada has failed to protect seniors in care and further, Canada has the worst record for COVID-19 deaths in long-term care among wealthy countries. According to CIHI, one in three Canadian long-term care homes experienced an outbreak during the first wave. Ultimately, 69% of Canada’s COVID-19 deaths have occurred in nursing homes (long-term care) compared with 41% elsewhere.
When I was a teenager in the 1970’s I worked part time in two long-term care facilities over a three-year period. I loved my job as a nursing attendant, but it broke my heart. It didn’t stop me from eventually pursuing a career as a health professional, but it nearly did. Nonetheless, those experiences settled in my mind that if nothing changed in terms of what I was witnessing, I would do everything in my power to make sure that nobody in my family would ever be placed in long-term care. Those words may sound harsh, particularly to those committed people who work tirelessly in elder care today, but they reflect my truth and that of many others. And I would challenge each of you who are reading this now; where and how do you expect to spend your older years? In a long-term care facility? In your own home? With home care if needed? I suspect that home care might be an acceptable solution. But I digress.
One of my first, truly awful experiences took place around mealtime. One afternoon I was asked to feed lunch to a lady who suffered from late stage dementia and who had difficulty swallowing. I went to the cart to retrieve her meal tray and found one bowl that contained some odd smelling, thick greyish colored material accompanied by nothing more than a single spoon. I was perplexed and frankly a little naïve, so I asked the cook what it was. Turns out it was the resident’s entire meal. Her meat, potatoes, vegetables, and dessert had all been pureed together and served in one bowl. I was horrified and angry. I asked why there weren’t 3 bowls or at least two. I was happy to feed Mrs. Brown (pseudonym); I just wasn’t happy that something as fundamental to our personal dignity and our quality of life as a meal couldn’t somehow be served with a little more creativity and frankly, more respect. My outrage was ignored. That woman’s meals for the duration of the time I worked in that facility remained exactly the same. One bowl. No distinguishable aroma or flavor. No joy. To this day I remain haunted by that woman and others in my care. I can recall her name and the defeat in her eyes.
Over those three years, the wholesale and institutionalized warehousing of people, the weekly bathing schedule only when staff were available, the unpalatable meals, the lack of stimulation, the frankly insulting use of homogeneous greetings like “dear” or “sweetie” alongside the complete lack of consideration for anything the residents had to say truly broke my heart. Ten years later however, in the first year of my registered nurse’s training I worked in a long-term care facility with more than 100 residents. These individuals lived in semi-private and public (four bed) rooms with cinder block walls. Once morning care and breakfast had been provided, residents were lined up in geriatric chairs in the hallways and left where many would soon begin crying out for help or simply for attention. More heartbreak. Then, 15 years after that, in the early 2000’s while completing my master’s degree I embarked on an ethnographic study at a large long-term care facility in a metropolitan city. I interviewed countless residents, all of whom expressed anxiety and desperation regarding their living conditions. Not one individual conveyed satisfaction with their environment. Finally, in 2018 and 2019, when working as a consultant for an elder care researcher, a deep dive into policies and funding for long-term care left me feeling discouraged. We have accumulated vast knowledge and ample research findings along with sufficient funding to transform long-term care and yet very little has changed. We are willing to talk about the problem and secure more and more research money to explore the problem in greater depth, but the will to move knowledge to action appears to be absent. Nobody seems broken hearted enough to say “enough”! Enough talk. Enough research. Enough discussion. When will it be time for action?
More than 40 years after my earliest experiences as a teenaged nursing attendant in long-term care, I remain haunted by the care that I have witnessed throughout my career. I fail to see how the practice of caring for older adults, particularly those with cognitive impairment somehow allows us to justify such an impersonal and institutional approach or how governments can look the other way and justify their inaction by lamenting about the scope of the problem or the lack of resources. It’s well known that 85% of the people who live in Canadian long-term care facilities have some form of cognitive impairment and 70% have dementia so it’s safe to say that these people are simply believed to be of less value to health care and society than other age groups. If this wasn’t the case, we would have made the necessary changes long ago. The care of an entire population of people in long-term care has become so rooted in routine and the drive for efficiency and cost savings (and in some cases, net margin) that it appears we’ve lost sight of who we are serving and why. And I suspect that we may have neglected to consider the fact that if our parents or grandparents are being housed in this fashion, it stands to reason that some of us may also live long enough to experience some of that same care.
As baby boomers reach the stage of life where we may require care, awareness about the gaps in long-term care is on the rise and groups are calling for change. We are seeing new long-term care facilities being constructed all over the country. Some are ‘for profit’ while others are ‘not-for-profit’. There are beautiful facilities located in nearly every province where meals are home cooked and individual needs or unique cultural practices are respected. Residents often have the freedom to move safely around their facilities and efforts to ensure quality of life are on the rise. However, like everything else in our society, you get what you pay for. Publicly funded long-term care is not reflected in the elder care you see advertised on TV. If you can afford the cost of care beyond what is offered in a basic bundle of services, you can receive it. But it comes at significant cost. A friend of mine who placed his mother in care, spent more than $7,000 per month in additional services (over and above the base rate at that facility). The total cost of care for his mother exceeded $11,000 per month which is not uncommon. He was satisfied that she was being given the care she needed but while this came at a cost he was able to incur, long-term care for most people is cost prohibitive. Keep in mind that the median after-tax income of Canadian families in 2018 was $61,400 and senior family after-tax incomes were $63,500. So, unless seniors or their family members have accumulated significant pensions alongside additional savings, the sort of care we aspire to for our loved ones or ourselves is simply out of reach. Publicly funded long-term care becomes the only reasonable option and people are often shocked to discover that this option excludes many basic niceties that we would expect.
It’s past time to act and we are frankly out of time. Across the world…
“the proportion of the population aged 65 and older is rapidly growing. Because advancing age is the greatest risk factor for dementia, it is projected that the number of people living with dementia worldwide will nearly triple by 2050…. Dementia also impacts men and women in different ways. Women are at a greater risk of developing dementia, of living longer with dementia, and they also provide most of the informal (unpaid) care for people living with dementia.”
Rapid shifts in population aging and dramatic increases in the number of us who will enter our older years with one or more chronic illnesses is finally compelling policy makers and funders to consider taking action. Furthermore, on March 25, 2021, the Canadian Medical Association claimed that the total cost of delivering long-term care to older adults will nearly double over the next 10 years unless we look at options such as reducing reliance on long-term care in favor of home care.
The following facts must also be acknowledged:
The rate of health spending growth for non-seniors has increased faster in recent decades than the rate for seniors.
The Canadian population aged 65 and older will rise by approximately 25% by 2036.
As the complexity and heaviness of the care needs of the residents in long-term care homes has risen, government data shows that the amount of care provided has actually declined.
1 in 5 Canadians aged 45 and over are providing care to seniors with long-term health problems and one in 4 of all informal caregivers are seniors themselves.
Care aides who work in long-term care facilities in Canada have been called ‘health care’s hidden army’ with approximately 250,000 employed in Canada who are providing 70 – 80% of all direct care to nursing-home residents.
On January 20, 2015 Dr. Carole Estabrooks highlighted that 60% of care aides (in long-term care) are born outside of Canada with just under 50% having a first language other than English.
We have known for years that we urgently need to transform long-term care. Based on my own experience, it’s been clear that change has been needed for 40 years and yet here we are in 2021 looking with shock and surprise at the COVID-19 rates in long-term care and mounting a cry for change. And despite what we know, we are willing to continue discussing the problem and funding further research and analysis, but the urgency to act to make the necessary changes ‘now’ seems to be falling on deaf ears. When do we intend to make the investments necessary to protect our vulnerable older adults?
It was in this climate that COVID-19 arrived in early 2020. We were obviously and shamefully ill prepared and we have no excuses. Standard infection control practices were insufficient. PPE were difficult to secure, and exhausted (and frightened) staff resigned or simply didn’t show up for work. Residents were left without care, without adequate support, and without the dignity of a simple connection to their families or the outside world. In a letter in October 2020 to Minister Fullerton, Ontario’s Minister of Long-Term care, words such as “devastating, emotional, lonely, depressed, muzzled, trapped, and terror awakened” were used to describe the state of suffering and devastation in long-term care during the early COVID-19 outbreaks. Facilities were believed by many to have been forgotten in an overall COVID-19 response strategy. It comes as no surprise when you consider that long-term care is wildly inconsistent and delivered by staff who are dreadfully underpaid, inadequately trained, and improperly supported by poor and outdated policies.
Alberta’s situation is no different. In Edmonton alone, 56 of the city’s 62 long-term care sites have had to manage COVID-19 outbreaks where seniors died at 40 of those sites. In January of this year, and as a result of the devastation experienced in long-term care in Alberta, there was an outcry to better protect Alberta seniors. The Alberta Government is currently conducting a review into the province’s COVID-19 response. Regardless of the outcome of yet another report, we know that money needs to be spent on delivering care if we hope to transform care. This pandemic may indeed have become the canary in the coal mine and perhaps the outcome will drive us to finally invest in our seniors and those heroines and heroes who care for them. System changes, policy changes, and a “professionalizing of the long-term care workforce” are absolutely essential.
Dr. Carole Estabrooks, whom I had the privilege of working with a few years ago, has been telling the world for years that older adults are treated as less deserving of health care services than any other age group. Dr. Estabrooks and her colleagues at Translating Research in Elder Care (TREC) https://trecresearch.ca/ want to change the story of elder care in Canada and around the world. Their hope is to transform the experience of care by using their research findings to move knowledge to action. Our closing thoughts are offered from a recent CBC op-ed written by Dr. Banerjee and Dr. Estabrooks:
All developed countries, Canada included, have the resources to do things better if we choose to act. This means changing the way we value and treat people with dementia and those who live in ‘long-term‘ care homes:
- We can improve the way we organize and deliver long-term care, integrating strategies around dementia, seniors, and LTC.
- We can integrate the approaches taken by government departments and organizations to seniors across health and social support, education, and transportation.
- We can give teeth to the rich science emerging about how to prevent frailty in older adults and delay the onset of dementia — dedicating resources, political will, and grass-roots community support. This alone would have a profound positive social, health and economic impact on Canadian society.
- We can acknowledge that long-term care is largely dementia care and ensure that residents are supported to maximize their quality of life, enabling them to live well with dementia.
- Importantly, we can develop and implement an innovative and internationally recognized strategy for long-term care. One that would remove the fear so many people have of going to a nursing home.
Our values and our actions need to change. We need to recognize the ultimate sacrifice made by older people in this crisis, and truly put the provision of great quality care for people with dementia at the top of the political and social agendas.”
So how did we get here? At what point how did we decide it was okay to warehouse our older adult family members with or without dementia and why? Are we so busy building our own lives that our core values have been eroded to the point where we are willing to look the other way and accept that basic institutional care simply has to be enough for our older loved ones? Before we try to understand the myriad of events that may have gone wrong with our COVID-19 response in long-term care or jump directly to blame the ‘system’, we had better start assessing our own attitudes toward aging and look back a few generations at how we once treated our seniors. And let’s not forget that if the demand for institutionalized long-term care wasn’t there, we simply wouldn’t be having this conversation. Instead, we’d be advocating for improved tax incentives alongside well funded and accessible home care to support us in caring for our own family members as their frailty and their vulnerability mounts.
Tell us what you think about senior’s care. How do you think we might work together to demand and obtain sustainable and high-quality care for our older adult family members in Canada? Do you know how long-term care, home care, and other services for seniors are funded and delivered in your region? And finally, knowing what you do know about long-term care, are you comfortable with the possibility of moving into a facility when you are no longer able to remain safely in your own home? We’d like to hear from you and continue the conversation.
 Canadian Institute for Health Information. The Impact of COVID-19 on Long-term Care in Canada: Focus on the first 6 months. https://www.cihi.ca/sites/default/files/document/impact-covid-19-long-term-care-canada-first-6-months-report-en.pdf
 Statistics Canada. Canadian Income Survey, 2018. Released February 24, 2020. https://www150.statcan.gc.ca/n1/daily-quotidien/200224/dq200224a-eng.htm
 CCNA, International Position Paper on Dementia Chaired by Scientific Director of the Canadian Consortium on Neurodegeneration in Aging. July 5, 2018. http://ccna-ccnv.ca/news/international-position-paper-on-dementia-chaired-by-scientific-director-of-the-canadian-consortium-on-neurodegeneration-in-aging/
 Canadian Medical Association. Canada’s Elder Care Crisis: Addressing the Doubling Demand. https://www.cma.ca/sites/default/files/pdf/health-advocacy/activity/CMA-LTC-Deloitte-Report-EN.pdf
 CIHI 2011, page ix (from Ontario Health Coalition, January 21, 2019 page 2)
 Ontario Health Coalition. Situation Critical. January 21, 2019. Page 4
 Kent, F. Deaths and COVID-19 outbreaks at carer homes renew calls to better protect Alberta seniors. January 26, 2021. https://globalnews.ca/news/7601479/covid-deaths-outbreaks-alberta-seniors-care-homes/
 Banerjee, S. & Estabrooks, C. Long-term care outbreaks, deaths reveal how badly we undervalue seniors and people with dementia. CBC News Opinion. February 2, 2021. https://www.cbc.ca/news/opinion/opinion-dementia-long-term-care-homes-1.5871981