Caregivers were traumatized by the public health and long-term care policies of COVID-19

We all saw the horrors unfold in long-term care (LTC) in Canada during the COVID-19 pandemic. Canadian LTC residents represented 81 percent of nationally reported deaths from COVID-19.

News reports documented our national shame as elderly residents suffered throughout the pandemic. They experienced inhumane treatment, ranging from physical and social isolation to severe neglect and even death from dehydration and malnutrition.

Residents were confined to their rooms for long periods of time without access to recreational programs or visitors, including essential family caregivers who often provided the majority of daily care, such as feeding and clothing, as well as socialization.

The Canadian military 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 on dirty beds and were documented choking on their own food due to inadequate nutrition. Some LTC homes had insect infestations and poor infection prevention and control practices.

Global News reports on military placement in long-term care homes.

Family caregivers saw tragedies and distress unfold as they were barred from visiting their loved ones in these homes.

Collective trauma

Essential family caregivers are defined as any trusted individual chosen by the resident or their surrogate decision maker who provides care and companionship to a resident.

In many provinces, LTC homes began to draw up strict rules allowing only a small number of essential family caregivers—one or two—in LTC homes at various stages throughout the pandemic, and initially only for residents receiving palliative care. This approach was often governed by various 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 affects, directly or indirectly, a unique group of people. Our research shows that essential family caregivers of LTC residents 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 imposed 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 believed they were being kept out on purpose to hide the ongoing neglect exposed at the start of the pandemic.

Technological substitutes

After several 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 personal communication. This was often due to planning problems, poor use and equipment that was unable to adapt to the resident’s physical or cognitive needs.

Furthermore, LTC homes do not have the technological infrastructure, such as Wi-Fi or tablets, to support that mode of communication. Most homes also don’t train their staff to use the technologies — facilitating video calls, for example, requires staff to set up the devices for the resident.

Often, the calls were inappropriately placed. In one situation, residents were placed in a noisy common area, making it difficult for families and residents to hear each other. Video conferencing was also a source of anxiety and worry for some residents with dementia. Lack of privacy prevented residents and families from discussing the care provided.

The futility of these video conferences made family caregivers give up. Technology, in this case, was promoted as a lifesaver for essential family caregivers, but turned out to be an inadequate means of communication.

Finally, essential family caregivers were forced to undergo repeated and invasive polymerase chain reaction (PCR) tests. During times of high community prevalence, caregivers conducted testing twice weekly to maintain their weekly access to residents. One study participant noted performing 50 PCR tests in an eight-month period simply to maintain uninterrupted weekly access to her loved one in LTC.

During a limited testing period, this meant additional hours of time and strain on family caregivers, often the grown female children of residents who had to take time off work.

Esther Hladkowicz holds an image of herself and her father Heinz Ziebell, taken during their first visit in eight months due to the COVID-19 restrictions.

Family caregivers also recalled seeing their loved one again and experiencing the “shock” of seeing the damage first hand. The physical, cognitive and psychological damage done to their loved ones by prolonged isolation was described as a “nightmare”.

Many recounted their loved ones’ physical decline from being able to walk to wheelchairs. They also witnessed deterioration of residents, 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 bear.

Preparing for future pandemics

As we prepare for potential future pandemics, we must collectively fix the issues that persist within the LTC sector. The future of care must include more publicly funded and better quality home care models that allow older adults to age in place in their own private homes.

But because LTC homes will remain to provide extensive and complex care for a growing number of seniors and others, such as the disabled, we propose the following starting points:

1) Policy: There should be laws, ideally at the federal level, to prevent families from being locked out of LTC homes. Efforts have been made, such as Bill 203, the More than One 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 consideration of cultural, historical, and gender issues. This approach should be integrated into the care practices and guidelines of health care providers.

3) Interventions: The final report of the Ontario LTC Commission highlighted the need to provide counseling services to staff and residents, however no suggestion was made to extend these services to family caregivers. Our research clearly highlights the need for such support for family caregivers of those living in LTC.

The cumulative consequences of continued LTC visitation restrictions have yet to fully materialize and will continue to play out over time for these family caregivers. The combined psychological, social and physical harm caused by this collective group of caregivers must be recognised. We must prevent the same horrors and collateral damage from happening again.

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