We were all watching the spread of fear in Canadian long-term care (LTC) during the COVID-19 pandemic. LTC residents in Canada accounted for 81% of all COVID-19 deaths reported nationwide.
News reports recorded the shame of our people, who were suffering from the elderly throughout the pandemic. They experienced inhumane treatment, from physical and social cell confinement to severe negligence and even death from dehydration and malnutrition.
Residents were trapped in rooms for extended periods of time without access to recreational programs or visitors. This includes important family caregivers who often provide most of their daily care, such as eating, changing clothes, and socializing.
Canadian troops have been deployed to some of Canada’s most devastated long-term care facilities throughout Canada. They recorded disturbing explanations of abuse and substandard care — residents were left in dirty bedding for days and choked their food due to improper feeding. Insects were widespread in some LTC homes, resulting in inadequate prevention and control of infection.
Family caregivers were forbidden to visit their loved ones in these homes, seeing tragedy and worries.
Collective trauma
A mandatory family caregiver is defined as a trusted individual who is selected by the resident or its surrogate decision maker and provides care and dating to the resident.
In many states, LTC homes are initially targeted only to residents receiving palliative care at various stages throughout the pandemic, and only a few important family caregivers (one or two) are LTC homes. I started drafting strict rules that allow me to enter. This access was often regulated by various rules. These designated families were often the only connection that LTC residents had with the world outside their room.
Collective trauma can be understood directly or indirectly as a “catastrophic event” that has a significant impact on a unique group of people. According to our research, the essential family caregivers of LTC residents experienced collective trauma caused by long-term separation, resulting in extreme helplessness and hopelessness.
Family caregivers felt helpless in the face of strict government visit bans. As their loved ones got worse, they had to keep an eye on them. Relationships between critical family caregivers and LTC staff and managers became tense and often hostile. The family felt deliberately locked out to hide the ongoing negligence exposed in the early stages of the pandemic.
Technical alternative
After a few months of separation, LTC’s home sought to use technology to facilitate communication between family caregivers and residents. According to another study, technology was not a good alternative to face-to-face communication. This was often due to scheduling issues, inadequate utilities, and the inability of the device to adapt to the physical or cognitive needs of the resident.
In addition, LTC’s home does not have the technical infrastructure such as Wi-Fi and tablets to support its communication mode. Also, most homes do not train their staff to use technology. For example, to facilitate video calls, staff need to set up a device for residents.
In many cases, the call was misconfigured. In some situations, residents were placed in noisy common areas, making it difficult for families and residents to hear each other. Video conferences were also a source of distress and agitation for some residents of dementia. Lack of privacy also prevented residents and their families from discussing the care provided.
The futileness of these video conferences has given up family caregivers. In this case, technology was advertised as an important caregiver lifeline for the family, but it turned out to be an inadequate means of communication.
Finally, essential family caregivers were forced to undergo repetitive and invasive polymerase chain reaction (PCR) tests. During times of widespread community, caregivers completed tests twice a week to maintain weekly access to residents. One research participant said she completed 50 PCR tests in eight months to maintain uninterrupted weekly access to her loved ones at LTC.
During the limited test period, this meant hours of additional time and burden on family caregivers, often the children of resident adult females who had to take time off from work.
Canadian Press / Justin Tan
Family caregivers also recalled experiencing the “shock” of meeting their loved ones in person and seeing the damage in person. The physical, cognitive, and psychological harm done to a loved one by long-term confinement was described as a “nightmare.”
Many talked about the physical decline from the time a loved one became unable to walk until he was tied up in a wheelchair. They also witnessed deterioration of the occupants, severe weight loss to “skin and bones”, unexplained injuries, and often dramatic cognitive changes.
Protecting and not being there with LTC during COVID-19 is an additional burden that family caregivers must bear.
Preparing for a future pandemic
Issues that persist within the LTC sector need to be fixed together in preparation for future pandemics. The future of care must include a model of higher quality home care with more public funding that enables older people to age in place in their own homes.
However, LTC housing offers the next starting point as it continues to provide extensive and complex care to more and more people, including the elderly and disabled.
1) Policy: Ideally, legislation is needed at the federal level to prevent families from being locked out of LTC’s homes. In some states, more than Bill 203, the Visitors Act, has been undertaken, but not yet.
2) Practice: Adopt a traumatic care approach that emphasizes safety, trust, support, cooperation, empowerment, cultural, historical and gender issues. This approach should be integrated into healthcare provider practices and care guidelines.
3) Intervention: The final report of the Ontarian LTC Commission emphasized the need for counseling services provided to staff and residents, but there was no suggestion to extend these services to family caregivers. Our research underscores the need for such assistance to family caregivers of people living in LTC.
The cumulative consequences of ongoing visit restrictions at LTC have not yet been fully realized and will continue to appear for these family caregivers over time. We must be aware of the combination of psychological, social and physical harm that this group of caregivers suffers. We need to prevent these same fears and incidental damages from happening again.
