Not Just a Visitor

COVID-19 restrictions at long-term care homes exposed a grey area in the definition of “essential”

One day in March, Jane Fisher* arrived at her husband Chris’s Alberta long-term care home, a trip she had made almost every day for more than two years. She had a bag of freshly laundered clothing to drop off, and she was picking Chris up, as she did most days, to bring him home so they could spend the day together. But this time, she was informed she couldn’t enter the building.

On March 17, 2020, Alberta’s Chief Medical Officer of Health Dr. Deena Hinshaw, declared a state of public health emergency in response to the COVID-19 pandemic. Among other province-wide regulatory changes, the order ushered in new safety protocols intended to protect vulnerable populations in congregate care homes. These protocols included restrictions on who was permitted to enter such buildings (residents and staff) and who wasn’t (almost everyone else). For non-staff, visitation access was limited to people whose family members were dying, or to visitors without whom “the essential care needs of the resident would otherwise be unmet,” an unspecific guideline in which “essential care needs” could easily be interpreted to mean life-sustaining actions such as administering medications and feeding. Visitors like Fisher, who were not medical personnel or professional personal support workers, but who spent hours each day supporting someone with everything from care planning and hygiene to hugging and talking, were literally left out.

Fisher wasn’t reunited with Chris, who has Parkinson’s disease and dementia, for four months, when revised protocols allowed designated visitors into Alberta health-care facilities as of July 23.

“For the first six weeks, I was beside myself,” Fisher says. “We’ve been married for 49 years and we’ve always been together. I didn’t know how to cope with this.”

While she understood and respected the need to prevent infection in the care home, she and Chris experienced significant distress while they were separated. They had almost daily FaceTime visits and she could wave to Chris through his ground floor window, but he suffered from boredom, depression and an increased level of confusion that persisted even after in-person visits resumed. “Me bringing him home daily to familiar surroundings was what helped him keep going,” Fisher says. Without her steady presence, Fisher says Chris would get confused as to what year it was and which city he was living in.

As for Fisher, she felt rudderless and lost without Chris to care for. “I was depressed, and I’ve never been a depressed person. I wasn’t used to being alone,” she says. Two months into lockdown, Fisher wrote a letter to Dr. Hinshaw. “I wanted her to know how difficult it was,” Fisher says. “I wanted her to know that we hated our lives.”

Who defines essential?

The Fishers’ story is not an anomaly: similar situations have occurred all over Canada since the coronavirus arrived and physical distancing became the new norm, especially in long-term care homes. Vivian Stamatopoulos, an associate teaching professor at Ontario Tech University who specializes in family caregiving, was a care partner for her grandmother and a passionate advocate for recognizing designated family members and friends as essential members of the care team. She describes the Ontario Ministry of Health March 13 memorandum, which recommended that visitors be excluded from care homes unless they were tending a dying relative or parent/guardian of an ill child or youth, as a travesty. “I knew the second that directive came down that it would spell disaster for residents,” she says.

She believes she’s been proven right. Now that family and friend care partners have been readmitted to Ontario continuing care homes (as of July 22), Stamatopoulos has heard multiple reports from people who say that isolation took a serious toll, that their family members or friends are not the same people they were four months earlier — that some residents appear to have given up the will to live.

The physical, mental and social benefits family and friend care partners can provide — and the detrimental consequences of isolating care home residents from these supports — have been a topic of scientific inquiry. Evidence shows that the presence of family/friend supports increases a patient’s feeling of security while decreasing anxiety, confusion and even the likelihood of cardiovascular complications. The presence of family care partners helps to facilitate better communication between the resident and their health-care team, resulting in better care planning that leads to better health outcomes and quality of life. Isolating patients from the people who know them best can increase the risk of medical error, emotional harm and inconsistencies in care.

Long before anyone had heard of COVID-19, social isolation was known to raise a person’s risk of developing dementia. The effect of enforced isolation during uncertain times on people already living with dementia — who often struggle with memory and planning, and who may find it difficult or impossible to communicate via video chat — is predictably negative. And it’s not just care home residents who benefit from family support. Stamatopoulos says family care partners who were abruptly denied access to their family member or friend suffered feelings of forced helplessness, depression and a sense of lost identity.

The exclusion of family care partners during COVID-19 lockdowns is a consequence of the poorly defined role these individuals play in Canada’s health-care system. Many people, especially those who live or work in long-term care homes, understand that family/friend care partners are anything but non-essential, but there has never been a formal distinction between casual, social visitors and those who provide significant, ongoing physical, mental and emotional support. Stamatopoulos says she’s never heard an explanation for why care partners, many of whom spend 30 hours or more providing support each week, were deemed non-essential by default by the government. “They are the invisible crutch that’s been holding up this system for decades,” she says.

Identifying essential care partners

Kim Brundrit is the coordinator of Dementia Network Calgary, a community-based initiative committed to supporting people living with dementia. Brundrit is also a volunteer for the Canadian Red Cross, and when pandemic lockdowns began, she started to receive emails asking if she’d be willing to volunteer in Quebec and Ontario long-term care homes. Understaffed even before the pandemic, facilities in those provinces were desperate for workers (the crisis became so acute that more than 1,000 troops from the Canadian Armed Forces were deployed to help in Quebec’s long-term care homes starting in May). Meanwhile, family/friend care partners were locked out. Brundrit started thinking there must be a better solution. What if it were possible to mitigate the risk of COVID-19 infection, while still allowing access to family/friend care partners? Would that not help to offset some of the staffing shortages and maintain quality of life for residents?

“I thought, if you can train me to work in a facility that has a COVID-19 outbreak, and I’m not a medical professional, why can we not train family care partners to go look after their loved ones?” Brundrit says. She and her team began the process of developing a training initiative for family/friend care partners in Alberta that would help to identify them as members of the core care team.

With that goal, and under the guidance of facility operators and caregivers, Brundrit and her team applied for access to the Canadian Red Cross program, which is federally funded, to give family/friend care partners free training in personal protective equipment (PPE) and infection prevention and control (IPAC), so they could visit the person they cared for without contributing to the risk of a COVID-19 outbreak. The training would also include communication tactics while wearing masks, especially when interacting with people with dementia. The training wouldn’t be a mandatory requirement by long-term care homes, but Brundrit’s hope is that it could provide an increased level of comfort and confidence that care partners would be able to keep both their friend or family member and the facilities safe and allow care partners continued access during an outbreak.

Recently, the Red Cross has announced the training is now available as an ongoing three-year certification program.

Hiring family members

Kensington Gardens, a 350-bed long-term care home in Toronto run by not-for-profit health services organization Kensington Health, was hit hard by a COVID-19 outbreak in March. The outbreak caused a severe staffing shortage as care workers got ill, went into isolation or confined their shifts to other care homes (many personal support workers work in multiple facilities at once). Abruptly, the home was down to roughly half its normal staff numbers.

Kensington Health president and CEO John Yip tried to address the staffing crisis by taking shifts in the dementia ward, redeploying staff from other clinics in the larger Kensington Health operation, hiring students on temporary contracts and recruiting nursing and personal support workers. Despite these efforts, Kensington Gardens was left with major staffing gaps, especially on weekends. Meanwhile, Yip was fielding calls from family members of residents, who insisted they were essential partners in care and were dismayed to have lost access to their loved ones. Finally, Yip’s team brought him the solution to both problems, which had been staring them in the face: why not hire family members to work in the home?

As it turned out, there were myriad legal and practical reasons why not. Yip had to consult with family members, the union and lawyers. He had to define the scope of care in this new role, as well as who to hire and how the hiring process should look. What would existing staff think? What would residents think? Transparency is one of the facility’s goals, but is actually onboarding the family members of residents a little too much transparency? “We weighed all that in 24 hours,” Yip says.

The concerns were considerable, but none were unsurmountable. Yip’s team successfully hired six family members of residents as temporary workers (for 90-day terms) and trained them at an accelerated pace. These new hires, called unit aides, were required to care for all 25 residents on the floor, not just their own family. They would not dispense medication or perform specialized tasks like lifting residents, but would be responsible for activities like socializing, setting up puzzles, arts and crafts and iPads, and lending an elbow to help a resident walk around. Unit aides would always be supervised, and they would have to follow the Kensington Gardens code of conduct and privacy/confidentiality requirements.

The decision to hire family members was a desperate one, and Yip says it could have been prevented by significant systemic change that would raise staffing levels, improve compensation and training, and increase funding for infrastructure. “We shouldn’t have got to this point as a sector,” he says. Nonetheless, the unit aide program was a success. Yip observed these employees interacting with all the residents and treating them with the kindness and empathy they showed their own family. Their supportive presence contributed to the wellbeing of every resident, while mitigating the effects of the staff shortage. Unit aides were paid, but many chose to contribute their pay back to the Kensington Health Foundation.

Yip says this type of solution isn’t necessarily a good fit for every care home, but he’s interested how the unit aide program might evolve at Kensington Gardens post-pandemic. How can he engage family members better and offer them more comprehensive training? “Family members are essential caregivers,” he says. “They can be an asset to the entire floor.”

Looking to the future

Today, Jane Fisher is able to spend her days with Chris, with continued precautions, but she lives in dread of a second or third lockdown — a scenario that can’t be ruled out in a province that has struggled to control community spread of COVID-19. Now that she’s been through the first separation, Fisher thinks she might cope better, but she worries about her husband. “What will happen to him if he has to go through that again?” she says.

If the pandemic has one positive outcome, it may be that it helps to create a clearer understanding of the role family and friends can play in long-term care, and to ensure family care partners like Fisher retain access to the person they care for no matter what. In updated visitation guidelines published by Alberta Health Services on July 30, a “visitor” is defined as a social guest who is not involved in patient care, while a “designated family/support person” is defined as someone involved in the care and health matters of a resident, including assistance with feeding, mobility, personal care, emotional support, decision making and communication. It’s a clear distinction, and it’s a good start. [ ]

* Jane and Chris Fisher’s names have been changed. 

Carer Support Needs Assessment Tool (CSNAT)

Increasingly, health-care professionals and educators are recognizing the need for a better support system for family/friend care partners. Many people who perform unpaid care work in Canada report increased levels of stress and depression, and doctors have observed that patient care is negatively affected when caregivers are distressed. Sharon Anderson, an expert in aging and family gerontology, says it’s not caregiving that creates stress, it’s overwork. “It’s not having respite. It’s being lonely and isolated,” she says.

The Carer Support Needs Assessment Tool (CSNAT) is an evidence-based tool developed in the U.K. in 2007 that helps care partners of people with long-term conditions to self-report on their own well-being. It’s a questionnaire that identifies support needs in 14 key areas (or domains), from managing symptoms and sourcing equipment to addressing spiritual concerns or finding support to take an overnight break. The CSNAT uses a five-stage person-centred process that is facilitated by a practitioner and led by the care partner. Known as the “CSNAT approach,” this process opens up a conversation between the care partner and health-care professional about how to address those support needs, which includes the creation of a shared action plan. Currently, about 60 Alberta health-care providers are trained to use CSNAT.

Caregiver Identification Badge

In 2018, Ontario independent health policy think tank The Change Foundation introduced the Caregiver Identification (ID) Program and Family Presence Policy. The program, adapted from a similar “carer passport” initiative developed in the UK, uses a visual icon to identify designated family members and friends who provide essential care, and to ensure they maintain access to the person they care for who depend on their support.

The icon appears on Caregiver ID cards and in health-care settings (such as at patient bedsides). In addition to quickly identifying essential care partners, the program facilitates the integration of family members as partners in the health-care team. It clearly differentiates casual visitors from essential support people, who have historically been lumped into a single “family and friends’ category that fails to recognize the physical and emotional role some visitors play in the wellbeing of patients and residents.

Christa Haanstra, executive lead, strategic communications for The Change Foundation, says the Caregiver ID program is intentionally flexible and designed to be implemented facility by facility. “There’s no standard approach to implementation,” she says. Supporting a family member with cancer, for example, is not the same as supporting a loved one with mental illness or dementia, who can’t necessarily identify their caregiver. “You can be an essential caregiver even if the patient doesn’t always recognize you,” Haanstra says.

Defining Care

Dawn Baxter, a dementia consultant and support person for the Ministerial Advisory Board on Dementia for the Federal Minister of Health, is also a partner in care for Mary Beth Wighton, (pg. 30),  who has young onset dementia. Baxter shares her definitions for common terms for support people.

Care partner/Partner in care
This term is preferred by many people because it clearly identifies a support person as a member of a larger care team, while affording dignity and respect to the person with dementia.

Carer
A broad, inclusive term that can include all members of a care team.

Caregiver
While commonly used, Baxter and Wighton consider this term problematic because it implies that care flows only in one direction.

Caretaker
Baxter and Wighton consider caretaker a pejorative term. It implies the person with dementia is simply a recipient of maintenance.