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

We’ve all seen the horrors unfolding in long-term care (LTC) in Canada during the COVID-19 pandemic. Canadian LTCs represented 81 percent of those who died from COVID-19.

News reports have shown the shame in our country as the elderly are suffering throughout the pandemic. They were subjected to cruel treatment, from imprisonment and social isolation to extreme neglect, and even death from dehydration and malnutrition.

Residents stay in their rooms for long periods without access to entertainment or visitors, including important family caregivers who often provide daily care, such as feeding and dressing, and socializing.

Canadian soldiers were assigned to some of the most critical LTC facilities across Canada. They wrote disturbing stories of abuse and poor care – residents were left for days in dirty beds and were recorded choking on their food due to improper feeding. Some of the LTC buildings were equipped with disinfectants and preventive and preventive measures.

Family caregivers watched the tragedies and suffering that took place, while they were forbidden to visit their loved ones in these homes.

Collective trauma

Family caregivers are defined as any trusted person designated by the resident or his/her designated successor who provides care and companionship to the resident.

In many states, LTC homes began to write strict rules that allowed a few essential family caregivers – one or two – in LTC homes for varying periods of time throughout the epidemic, and initially only those receiving limited care. This access is often governed by different laws. These selected families were often the only ones LTC people had in the world outside of their room.

A collective injury can be understood as an “unfortunate event” that affects a particular group of people, directly or indirectly. Our research shows that important family caregivers living in LTC experienced traumas caused by long-term separation, which led to feelings of hopelessness and despair.

Family caregivers felt powerless in the face of increased visitation restrictions imposed by governments. They had to watch helplessly as their loved ones weakened. Relationships between key family caregivers and LTC staff and administrators were strained, and often conflicted. Families felt they were being held back deliberately to cover up the negligence that had been revealed at the beginning of the epidemic.

Technical substitutes

After months apart, LTC homes tried to use technology to facilitate communication between family caregivers and residents. Some studies have shown that technology has not replaced human interaction. This was often due to system problems, inefficient use and equipment not being adapted to the resident’s physical or intellectual needs.

In addition, LTC buildings do not have modern equipment, such as Wi-Fi or tablets, to be able to communicate in this way. Many homes also don’t train their staff to use the technologies – controlling video calls, for example, requires staff to set up the resident’s devices.

In many cases, phones are placed improperly. At one time, people were placed in a noisy area, which caused families and people in the country to get along. Video conferencing also caused anxiety and confusion for some people with dementia. Lack of privacy also prevented residents and families from discussing the care provided.

The ineffectiveness of these video conferences has caused family caregivers to give up. Technology, in this case, was promoted as a way to find important family caregivers but it turned out to be an insufficient means of communication.

Finally, important family caregivers were forced to undergo repeated and invasive polymerase chain reaction (PCR) tests. At the time of the massive outbreak, caregivers completed testing twice a week to maintain their weekly access to residents. One study participant found that she completed 50 PCR tests in eight months just to ensure her loved one’s access to LTC was uninterrupted.

At a time of limited testing, this meant extra hours and stress for family caregivers, often the older daughters of the village who had to retire.

Family caregivers also recalled seeing their loved one in person again and being “horrified” by seeing the damage firsthand. The physical, cognitive and emotional harm that their loved ones face as a result of being incarcerated for so long was described as “horrendous.”

Many reported their loved ones’ weight loss from being able to walk to being in a wheelchair. He also observed the deterioration of the occupants, extreme emaciation to the point of “skin and bones,” unexplained injuries and severe cognitive impairment.

Not being able to protect and be present for their loved ones in LTC during COVID-19 is another burden that important family caregivers must bear.

Preparing for future outbreaks

As we prepare for future pandemics, we must collectively address the ongoing challenges in the LTC sector. The future of care must be community-based and good models of home care that allow seniors to age in their families.

But because LTC homes will remain to provide comprehensive and complex care for the elderly and others, such as people with disabilities, we recommend the following starting points:

1) Policies: There should be laws, especially at the federal level, to prevent families from being locked out of LTC facilities. Efforts have been made, such as Bill 203, the More Than A Visitor Act in some states, but it has not yet been implemented.

2) Do: Adopt a trauma care approach, which emphasizes safety, trust, support, collaboration, empowerment and consideration of cultural, historical and gender issues. This approach should be incorporated into clinical practice and care guidelines.

3) Actions: The final report of the Ontario LTC Commission highlighted the need to provide counseling to staff and residents, however no recommendations were made to extend this support to family caregivers. Our study clearly highlights the need for such support for family caregivers living in LTC.

The cumulative effects of travel restrictions in LTC have not yet been realized, and will continue to be evident over time for these family caregivers. The combined emotional, social and physical pain caused by the integrated group of caregivers must be recognized. We must prevent the same risks and collateral damage from happening again.