Dementia patients stressed by pandemic, survey finds

The year-long pandemic has left people with dementia and their caregivers more stressed, lonelier and more isolated, according to a new UBC study, raising concerns about the impact of public health measures such as social distancing and care-home visitation limits on this segment of the population.

The study, published in the Journal of Alzheimer's disease, analyzed the survey responses of 417 British Columbians, including 22 people with dementia and 395 caregivers of people with dementia. Participants ranged in age from their 20s to 80s, with the majority in their 70s.

“What we've heard is that they're experiencing high levels of stress and much more loneliness than before the pandemic,” said Dr. Julie Robillard, senior author and assistant professor of neurology at the University of B.C.

Participants said they tried to address these issues using stress-reduction techniques or activities to support their mental health, but “in a lot of cases, those were not sufficient,” added Robillard.

The survey, conducted between June and August 2020, found that 81 per cent of people with dementia reported sometimes or often feeling left out and isolated, while 76 per cent reported they lacked companionship. About 83 per cent reported feeling more isolated compared to before the pandemic.

Public health orders to keep COVID-19 at bay, such as social distancing, limiting public gatherings, and restricting visits to long-term care homes, meant families and caregivers were limited from visiting or were unable to be physically close to people with dementia.

Those responses were implemented rapidly because of the pandemic, said Robillard.

“But now we've had more time to experience the pandemic ... it's important to involve people with dementia and care partners in that discussion on how we go about managing events like this as a society to make sure their needs and concerns are addressed.”

Limits on visits were a major cause for concern for people with dementia and their caregivers, she said, not simply because people want to spend time with each other but because representation and advocacy are crucial for people living with dementia.

“It's important that we are in touch with what is going on with their lives and can provide support when needed,” said Robillard. “Not being able to advocate for loved ones was very distressing to our participants.”

Other concerns included worry the person they cared for would get infected from COVID-19 and access to therapy or a vaccine in the future, both from a practical standpoint, such as how to leave the house and get to the vaccination site, which can be a challenge for people living with dementia, as well as concerns over stigma or discrimination against them.

One silver lining the study found was that 95 per cent of people with dementia and 86 per cent of caregivers reported they had been able to connect with friends and family during the pandemic, whether through a cellphone, laptops and tablets or home phones, even though the majority reported the virtual meetups were not the same as a face-to-face interaction.