Jennifer Lyle: For those living with dementia, families are essential to care

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Amid rising cases of the Omicron variant of COVID-19, BC reinstated visitation restrictions for long-term care homes early in the new year. Under the current restrictions, residents are theoretically eligible to designate someone as their essential visitor, someone who can see them in the care home and provide much-needed support. However, the reality is completely different: each care home is responsible for determining who should receive essential visitor status, and much of the support provided by kinship carers is not recognized as essential in provincial guidelines.

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Across Canada, January is recognized as Alzheimer’s Awareness Month. The Alzheimer’s Society of BC is running a campaign that says, “Don’t change. Even if they do. The campaign aims to inspire British Columbians to reflect on how they will continue to show up to the people in their lives who are living with the disease after two years of isolation and turmoil. Unfortunately, many people in BC are unable to do this because their loved one lives in a long-term care facility and care provided by family members is not considered essential.

In recent days, the media has shared harrowing stories of people directly affected by these visitation guidelines. But for every person who shares their experiences publicly, there are many more who are also affected. According to the Office of the Ombudsman for the Elderly, more than half of all applications for essential visitor status were denied in 2021, and less than 25 percent of all long-term care residents have an essential visitor.

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The BC Alzheimer’s Society connects with families across the province every day. We’ve heard about the impact isolation has had on residents living with dementia – deteriorating their mental, physical and emotional health, much of which can never be reversed. We’ve heard of the guilt, pain, and anxiety people have experienced from not being able to provide the care and love they know their loved one needs: a smile, a kind word, a reassuring touch. We have heard about the limitations of technology, such as tablets and video calls, for people in the later stages of dementia.

Members of our community have told us about the incredible challenges they’ve faced trying to gain essential visitor status: people who applied and were denied, were granted only temporary status, or were told they won’t have access to unless your loved one is nearing the end of life. In light of this, some members of the community have made the difficult decision to remove their loved one from care, regardless of the valid reasons they transitioned in the first place.

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We cannot ignore the realities of the current pandemic. But we must balance protecting against COVID-19 with protecting the overall health and quality of life for residents. At this time in the pandemic, we have several layers of protection in place to slow the spread of COVID-19: vaccination mandates, rapid testing, and masks significantly reduce the risk of outbreaks due to the presence of a family member.

Recently, the province of BC indicated that it is working to introduce social visitors in nursing homes. But this is not enough. Social visitation stops in the event of an outbreak, even though residents’ need for ongoing support does not. We already know that the Omicron variant has caused more outbreaks and put even more pressure on healthcare workers. Ensuring that every person in long-term care has an essential visitor means staff don’t have to play the role of family and friends in their absence.

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In an ideal world, someone in care would automatically be asked to designate an essential visitor, who would always be welcome to see them, regardless of future outbreaks of COVID-19 or otherwise. It doesn’t matter who that person is: a partner, an adult child, a friend, a paid support worker, they shouldn’t need to prove they’re “essential.”

As we approach January 18, when current restrictions are due to be reassessed, all eyes must be on this issue. On January 27, I will be discussing the essential role families play with Isobel Mackenzie, an advocate for BC seniors, in a virtual event called “Opening the Door: Why Families are Essential to Care” and I invite all British Columbians who care about this. topic to join the conversation. If you would like to register for the event or learn more about how you can advocate for people living with dementia, please visit alzbc.org/AAM2022.

Jen Lyle is the Executive Director of the Alzheimer’s Society of BC Before joining the Alzheimer’s Society of BC, she was the founding Executive Director of BC’s continuing care workplace safety association, SafeCare BC.