When Mario Gregorio was diagnosed with dementia 12 years ago, he was determined to continue to live a full life for as long as he could.
As a volunteer for the Alzheimer Society of Canada, Mario, who lives in Burnaby, BC, has educated thousands of people about the condition, and helped write the Canadian Charter of Rights for People with Dementia in collaboration with the Society’s Advisory Group of people living with dementia.
So, when the COVID-19 pandemic erupted and news started coming 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’re put on the bottom of the list.”
Gregorio lives independently, like so many others who maintain a good quality of life for years after a dementia diagnosis. But he knew that in a pandemic, when scarce resources had to be rationed, doctors might not take that into account and not even consider people with dementia for critical care.
“I thought, ‘Oh, we better start thinking about it and talk about it because we don’t want that to happen,’” he says.
Creating Alzhemier’s resources in unprecedented times
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.
- 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 to make sure they would 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,” he says. “To determine who might be offered critical care, including mechanical ventilation, versus which patients may not be able to receive that kind of care.”
Guidelines for health care workers
The team came up with a set of guidelines for doctors that fit into three categories:
Treat each person who has dementia as an individual, without making assumptions about their degree of ability or their quality of life.
This means recognizing that many people with dementia are living with good quality of life and should not be dismissed just because of their dementia diagnosis.
People living with dementia have “A wide range of different abilities,” says Dr. Smith. “Health care professionals should not assume that just because someone has dementia, they are either very disabled or suffering from poor quality of life.”
Treat each person living with dementia with respect, be honest with them, and provide the best care you can.
In other words, “If someone with dementia needs care but is not able to receive it because the health system is overwhelmed, that person deserves an explanation — an honest explanation — and they deserve the best alternative care, which could be palliative care,” says Dr. Smith.
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.
Dr. Smith explains, “It’s important to think through advance medical directives and wishes before someone becomes critically ill, so that their wishes can be known.”
Speaking up for the dementia community
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.
“We want to make sure that people with dementia are not left out,” he says. “Most of the articles I’ve read in the media assume that people with dementia are going to be excluded from medical care. 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.”