COVID-19 restrictions on visitors in long-term care and assisted living in B.C., lauded for avoiding the thousands of  resident deaths seen in Ontario and Quebec, have devastated the mental,  physical and emotional well-being of residents and their families,  according to a new report from B.C.’s seniors advocate.

Nearly half of family  members say their loved one’s physical functioning has worsened during  the pandemic, with 58 per cent reported deteriorating cognitive function  and the same proportion noting worsened mood and emotional states, the  advocate found.

The report, based on a survey of more than  15,000 residents and their family members conducted between late August  and the end of September, highlights the essential roles family and  friends play in the physical and mental health of loved ones in care.

But after almost nine months of lockdown  restrictions and only marginal loosening of rules to allow for one  social visitor per resident, seniors’ advocate Isobel Mackenzie is  calling on the Health Ministry and provincial health officer to allow  more visitors and increase family and resident input in decisions about  the sector.

“The relief many family members thought was coming has not materialized for so many,” Mackenzie said.

The use of antipsychotic  and anti-depressant medication for residents has also increased by seven  and three per cent respectively since the start of the pandemic.

“My sense is that it indicates a high level  of moral distress among residents,” added Dr. Joanie Sims-Gould, an  associate professor in the department of family practice at the  University of British Columbia.

Mackenzie says these troubling trends underline the urgency of keeping people connected with and supported by family.

“We imposed restrictions on visits because  we cared very deeply about protecting our seniors,” Mackenzie said  today. But residents “are more concerned about being separated from  family members than they are about COVID-19.”

B.C. recorded its first COVID-19 outbreak  at the Lynn Valley Care Centre in North Vancouver in March and Canada’s  first virus-related death soon after.

Since then, 151 residents have died due to COVID-19, while more than 4,500 have died for unrelated reasons while in care.

Sims-Gould noted that many of these deaths  may be related to the strain the virus has placed on already overworked  care workers and the toll stress has taken on residents’ physical  health.

“Maybe 4,500 is consistent with numbers  from other years, but what we don’t know is if those deaths were  untimely, sooner than expected or inconsistent with theirs and their  family’s wishes,” she said.

Mackenzie said there is not yet any  indication of excess deaths, but that future data could reveal that and  other troubling trends.

Already, half of respondents who lost a  loved one said they did not get to spend as much time with them as they  would have liked.

“We aren’t protecting these people from  dying,” said Mackenzie, noting that the average stay in long-term care  is between 12 and 18 months.

Orders in March barred all social visits to  limit the spread of COVID-19, and since then care home operators have  been responsible for designating each resident’s sole eligible essential  visitor and arranging their visits to carry out care work like helping  with meals, personal care and emotional support.

Before the pandemic, a  majority of residents’ visitors carried out these essential tasks in  addition to care provided by the facility, according to the survey.

But only 48 per cent of survey respondents  knew it was possible to apply to be an essential visitor, and just 42  per cent applied. Of these applications, 45 per cent were denied.

The majority of visits by approved  essential visitors are now less than 30 minutes once a week and  supervised in common areas, while they often lasted more than one hour  in a resident’s own room pre-pandemic.

“We need to recognize that the long-term  care system is really stretched and overburdened and that family members  are an essential component of that care,” said Sims-Gould. “And in many  cases family members are the voices of their loved ones who are  residents.

“So you don’t just eliminate an essential part of the system, you find a way to make it work.”

Mackenzie said facilities should allow  essential visitors to come more frequently and for longer, meeting in  the resident’s room if possible.

Around 75 per cent of residents have  individual rooms, and she added not having to supervise and arrange  visits in common areas would release a “huge pressure valve” on care  staff.

But while essential visitor changes can  happen without provincial intervention, provincial health officer Dr.  Bonnie Henry would need to issue a new order to allow for the  recommended increase in social visitors.

One designated social visitor has also been  allowed since June, but the rollout has varied across facilities, with  some visits not beginning until September.

And with many spouses and children having  to make agonizing decisions about who can visit a family member,  Mackenzie wants to see the number and frequency of allowed visitors  expanded by the provincial health officer.

Noting new high case counts in Fraser  Health, she suggested the province might diverge from its uniform  approach and take a region-specific strategy to restarting as many  visits as possible.

In an emailed statement to The Tyee, a  Ministry of Health spokesperson thanked those who participated in the  survey and said Mackenzie’s recommendations would be considered by the  province.

“Protecting residents, while balancing the  desire for connection, is an incredibly difficult balance that our  health leaders wrestle with every day,” read the statement. “The  Seniors’ Advocate recommendations help inform these ongoing  deliberations.”

The report described also the heartbreaking  personal experiences of the residents and loved ones mostly barred from  seeing each other for the last nine months, with many noting residents  with dementia or Alzheimer’s still have difficulty understanding the  separation and why they can’t touch or visit more often.

“My reason for moving here was to be close  to him and support him in our journey with dementia. It has been very  hard on him to be separated from me, our daughters and grown  grandchildren,” wrote the wife of a long-term care resident, who lives  in an apartment attached to his facility. “It has been six months since I  was up to his room. I realize how hard everyone has worked to protect  us, but time is not on our side and staff, who are excellent, come and  go from the building. I live here and just want to support my husband.”

Mackenzie called on the government to pass  legislation to establish an association to represent residents and  families of those in long-term care and assisted living and require  consultation on decisions that affect them.

“We need that, and we needed that way  before this. This survey demonstrates the frustration that these  families and residents feel for not being heard is almost as harmful as  the separation of residents and family members…. They feel powerless,”  said Mackenzie.

Family councils do exist at some  facilities, but they are not legally required and only have a  relationship with the care provider, not the province.

“We need to knit that together and bring  that collective experience up to the health authority level and the  provincial level,” said Mackenzie.

While the risk of COVID-19 transmission in  homes can never be zero, Mackenzie said that the last nine months have  brought much learning about how to prevent the transmission of the  virus.

And family are ready and willing to take every precaution possible to keep their loved ones safe.

“This survey has told us that the capacity  for family to care for one another is boundless,” said Mackenzie. “And  that when we know our time is limited, we focus on what matters most.”

“This knowledge must guide us as we focus on the ultimate goal of managing this pandemic.”

Sims-Gould echoed Mackenzie’s urgency,  noting long-term care “has been chronically understaffed and  overburdened for more than a decade [and] the demand for complex care  for residents has only increased.”

“People are entitled to live their life out  in a humane and well cared-for way, and the way the system has been  functioning hasn’t enabled that in many cases,” she said. “We have an  opportunity to be better, and residents and families need to be a part  of that.”