Dementia in the days of COVID-19: The B.C. Seniors Advocate’s perspective

British Columbia

People living with dementia in care homes and their care partners are among those who have suffered the most since the outset of the COVID-19 pandemic. British Columbia’s Seniors Advocate Isobel Mackenzie has been a leading voice in sharing the reality of what life has been like for people living in care homes and their care partners since the beginning.

B.C. Seniors Advocate Isobel Mackenzie

In November, Mackenzie released the results of a province-wide survey on the impact of visitor restrictions at care homes, completed by more than 13,000 respondents. Staying apart to stay safe also detailed recommendations to allow all residents an essential care partner, allow social visitors by balancing the risk of COVID-19 with the risk to a resident’s health from long-term family separations and create a provincial association of care home resident and family councils.

She recently shared some of her insights.

A public education

While COVID-19 revealed many of the gaps in long-term care to the public, family members of people living in care homes have long known they have an essential role in proving care. It has been an education for everyone else about the importance of these family members, B.C. Seniors Advocate Isobel Mackenzie says.

“That’s where you saw this friction in long-term care, between the system saying, ‘It’s our job to care for your loved one; it’s your job to love your loved one,’” she says. “I think we failed to recognize the degree to which some loved ones are actually caring for their families in long-term care.”

Mackenzie says many family members assist with daily living and personal care activities for those living in care like bathing, eating and going for walks.

When care homes were closed to visitors in March 2020, and strict distancing measures put in place, the biggest impact on people living with dementia was the upset to routine.

“Family members that came every day suddenly didn’t come for months. Staff started wearing masks, looking different. In some care homes residents were isolated in their rooms and activities like common dining were suspended.”

Routines were upended and families who were locked out began contacting the Office of the Seniors Advocate with concerns that dementia was progressing or accelerating. Many caregivers were concerned that as the pandemic wore on, people living with dementia in care were losing the capacity to recognize and enjoy their family members, or that their absence was misconstrued as disinterest. Video or telephone calls became the only ways to connect.

“It worked for some people,” she says. “But I would say, certainly not for people with moderate or advanced dementia.”

At the same time, there was more strain put on an already-strained staffing situation. Safety protocols were time consuming, staff with suspected COVID symptoms were absent and the provincial single-site order meant reduced access to casual staff pools. Care home operators were more likely than ever before to be short staffed and with the loss of support from family caregivers, many resident needs went unmet.

“So, you had this confluence of events, where suddenly care homes no longer had that extra pair of hands that family members offered.”

The use of antipsychotics also concerns Mackenzie. In 2020, B.C. recorded the highest increase on record in the use of antipsychotic medication in long-term care: up 10 per cent over 2019.

“Use has increased more than we’ve ever seen in the entirety of measuring antipsychotic use in long-term care,” she says. “The long-term consequences of that, we don’t know yet because we’re still using them in a much higher proportion of our residents than before.”

Mackenzie continues to monitor antipsychotic use and hopes it returns to normal levels by September.  

Moving forward

The full impact of the pandemic won’t be known until it’s further behind us, Mackenzie says.

While family caregivers generally have more access to loved ones in care once again, life inside B.C. care homes is still not what it was before the pandemic. If family caregivers are uncomfortable with decisions being made about a person’s care, especially when faced with added distance of COVID-19 restrictions, Mackenzie’s advice is to understand what your rights are and enforce them.

One example she points to is the decision to administer medication. Mackenzie says residents retain the right, either directly or through their representative, to refuse medications, even if they previously signed something that gives the doctor the authority to make decisions.

“If they sign a piece of paper that says, ‘I agree to let the doctor decide what’s best’ because they’re not there all the time and they don’t want to hold something up if they can’t be reached on the phone, that is a piece of paper they can revoke and reverse.”

Mackenzie says the same applies to visiting.

“Be sure the care home is following the spirit and the letter of the regulations and the public health orders and to find out what appeal processes there are for family members who don’t think that they or their loved one are receiving the care or the visitation access that they think they should be.”

Anti-psychotic medication and health-care decision-making rights

The inappropriate use of medication, including overuse of antipsychotic medication on people living with dementia, particularly in care homes, has been a concern and focus of reports from the Seniors Advocate, B.C. Ministry of Health and the Canadian Centre for Elder Law (CCEL), among others. In 2020, the CCEL released a set of tools to help people living with dementia and their care partners understand and exercise their health-care decision-making rights. Access them here. The tools followed the CCEL’s 2019 exhaustive report on health-care consent for people living with dementia.