Guidelines for Care

The Alzheimer Society of Canada’s COVID-19 and Dementia Task Force supports medical professionals to treat people with dementia with respect and fairness

When Mario Gregorio was diagnosed with dementia 12 years ago, he was determined to continue to live his life fully. 

As a volunteer for the Alzheimer Society of Canada, Mario, who lives in Burnaby, B.C., has educated thousands of people about the condition, and helped write the Canadian Charter of Rights for People with Dementia. 

So, when the COVID-19 pandemic erupted, and news started coming in from Italy about doctors having to choose who got an ICU bed and who didn’t, he got concerned.

“People with dementia are lumped in together with seniors in long-term care,” he says. “So you are put on the bottom of the list.” 

Gregorio lives independently, like so many others who maintain a good quality of life after a dementia diagnosis. But he knew that in a pandemic, when scarce resources had to be rationed, doctors might not even consider people with dementia for critical care.

Unsurprisingly, the Alzheimer Society of Canada had the same idea. To help the medical community answer questions about how to treat people with dementia, the Society convened the COVID-19 and Dementia Task Force, a team of leading researchers, clinicians, and dementia specialists from across the country. Its goals: 

• to advocate for better care for Canadians living with dementia

• to reduce the stigma and discrimination against people living with dementia.

The task force broke into teams that tackled different topics, including the question of how to allocate scarce resources in a pandemic. The objective was to help medical professionals make decisions in a crisis, and make sure they treat people with dementia with respect and fairness.

With the rapid spread of COVID-19, doctors and hospital administrators needed help with contingency planning, says Dr. Eric Smith, Professor of Neurology at the University of Calgary and Hotchkiss Brain Institute, who chaired the team that looked at the question of allocation of resources.

“We thought through how you would evaluate someone with dementia, along with people with other health problems to determine who might be offered critical care, including mechanical ventilation, versus which patients may not,” he says.

The committee came up with a set of guidelines for doctors about allocating health-care resources that fit into three categories:

1. Treat each person who has dementia as an individual, without making assumptions about their degree of ability or their quality of life. 

2. Treat each person living with dementia with respect, be honest with them about what care is available, and provide the best care you can.

3. Encourage people with
   dementia to let their doctors and caregivers know what kind of medical intervention they would like if they become seriously ill: whether or not they want to be resuscitated, put on a ventilator, etc.

Gregorio is also a member of the COVID-19 and Dementia Task Force. He says it’s crucial for people living with dementia to speak up for themselves. 

“Most of the articles I’ve read in the media assume that people with dementia are going to be excluded from medical care,” he says. “This should not happen. Our rights are the same as those of any other citizens of Canada. We should not be put at the bottom of the list for treatment just because of our diagnosis.” [ ]

Find out more about the Alzheimer Society of Canada’s COVID-19 and Dementia Task Force and its recommendations at alzheimer.ca/covid19-taskforce.