We all watched as the horrors unfolded in long-term care (LTC) in Canada during the COVID-19 pandemic. Canadian LTC residents represented 81 per cent of the national reported COVID-19 deaths.
News reports documented our national shame as older residents suffered throughout the pandemic. They experienced inhumane treatment, ranging from physical and social solitary confinement to severe neglect, and even death from dehydration and malnourishment.
Residents were confined to their rooms for extended periods of time without access to recreation programs or visitors, including essential family caregivers who often provided the majority of daily care, like feeding and dressing, as well as socialization.
The Canadian military was deployed to some of the hardest-hit LTC homes across Canada. They documented disturbing accounts of abuse and substandard care — residents were left for days in soiled bedding and were documented choking on their food due to improper feeding. Some LTC homes had insect infestations and poor infection prevention and control practices.
Family caregivers watched as the tragedies and distress occurred, while they were forbidden from visiting their loved ones in these homes.
Essential family caregivers are defined as any trusted individual chosen by the resident or their substitute decision-maker who provides care and companionship to a resident.
In many provinces, LTC homes began drafting strict rules allowing only a small number of essential family caregivers — one or two — into LTC homes at varying stages throughout the pandemic, and initially only for residents receiving palliative care. This access was often regulated by varying rules. These designated family members were often the only connection LTC residents had to the world outside their room.
Collective trauma can be understood as a “cataclysmic event” that significantly, directly or indirectly, impacts a unique group of people. Our research shows that essential family caregivers of residents in LTC experienced collective trauma caused by prolonged separation, resulting in feelings of extreme helplessness and hopelessness.
Family caregivers felt powerless in the face of draconian visitation bans levied by governments. They had to watch helplessly as their loved ones deteriorated. Relationships between essential family caregivers and LTC staff and management became strained, and often adversarial. Families felt that they were being purposefully kept out to hide the ongoing negligence exposed early on in the pandemic.
After months of separation, LTC homes attempted to use technology to facilitate communication between family caregivers and residents. Another study showed that technology was a poor substitute for in-person communication. This was often due to scheduling issues, poor utility and the devices not being able to adapt to the physical or cognitive needs of the resident.
Additionally, LTC homes lack technological infrastructure, like Wi-Fi or tablets, to support that mode of communication. The majority of homes also do not train their staff to use technologies — facilitating video calls, for example, requires staff to set up the devices for the resident.
Often, calls were inappropriately set up. In one situation, residents were placed in a noisy common area, making it hard for families and residents to hear one another. Video conferencing was also a source of distress and agitation for some residents with dementia. The lack of privacy also prevented residents and families from discussing the care provided.
The futility of these video conferences led family caregivers to give up. Technology, in this case, was promoted as a lifeline to essential family caregivers but it turned out to be an inadequate means of communication.
Finally, essential family caregivers were forced to undergo repeated and invasive polymerase chain reaction (PCR) testing. During times of high community spread, caregivers completed twice-weekly testing to retain their weekly access to residents. One study participant noted completing 50 PCR tests in an eight-month period to merely retain uninterrupted weekly access to her loved one in LTC.
During a period of limited testing, this meant hours of additional time and strain on family caregivers, often adult female children of residents who had to take time off work.
Family caregivers also recalled seeing their loved one in person again and experiencing the “shock” from seeing the damage firsthand. The physical, cognitive and psychological harm done to their loved ones from prolonged confinement was described as a “nightmare.”
Many recounted their loved ones’ physical decline from being able to walk to becoming wheelchair-bound. They also witnessed residents’ deterioration, severe weight loss to the point of being “skin and bones,” unexplained injuries and often drastic cognitive changes.
The inability to protect and be there for their loved ones in LTC during COVID-19 is an additional burden that essential family caregivers will have to shoulder.
Preparing for future pandemics
As we prepare for potential future pandemics, collectively we must fix the issues that persist within the LTC sector. The future of care must involve more publicly funded and quality models of home care that allow older adults to age in place in their private households.
But because LTC homes will remain to provide extensive and complex care for a growing number of older people and others, like people with disabilities, we propose the following starting points:
1) Policy: There need to be laws, ideally at the federal level, to prevent families from being locked out of LTC homes. Efforts have been made, like Bill 203, More Than a Visitor Act in some provinces, but have yet to be implemented.
2) Practice: Adopting a trauma-informed care approach, that emphasizes safety, trust, support, collaboration, empowerment and the consideration of cultural, historical and gender issues. This approach should be integrated into health-care providers’ practices and care guidelines.
3) Interventions: The Ontarian LTC Commission’s final report highlighted the need for counselling services to be offered to staff and residents, yet no suggestion was made to extend these services to family caregivers. Our research clearly highlights the need for such supports to family caregivers of those living in LTC.
The cumulative consequences of ongoing visitation restrictions in LTC have yet to be fully realized, and will continue to emerge over time for these family caregivers. The combined psychological, social and physical harms incurred by this collective group of caregivers must be recognized. We must prevent these same horrors and collateral damage from occurring again.
Charlene Chu receives funding from CIHR, SSHRC, NFRF, Alzheimer Society of Canada, Center for Aging and Brain Health, and AGE-WELL NCE.
Vivian Stamatopoulos has received funding from the Social Sciences and Humanities Research Council (SSHRC CRSH)