‘You’re kind of in limbo’: Study examines pandemic burden for caregivers of those with dementia

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Since 2015, Calgarian Daniel Gaetano has been a full-time caregiver for his wife, Janet, who lives with dementia.

Janet moved to a long-term care site in 2019, but Gaetano continued to visit her twice-daily, helping with meals, going on walks and providing company.

The most difficult experience for Gaetano, however came last March, when the COVID-19 pandemic began, shuttering access to care facilities vulnerable to viral spread.

“It was a void, for those months, in terms of long-term care where you had a complete lockdown,” he said.

“It was tough, because now you were lost. Your reason for what you are doing was no longer there. You’re kind of in limbo.”

Gaetano is one Albertan now working with University of Calgary researchers to help understand the impact the pandemic has had on family caregivers of those living with dementia.

Leading the study is Dr. Gwen McGhan, an assistant professor in the school’s Faculty of Nursing. Her team recently concluded a pilot survey for the project of 230 Calgary-area residents who look after someone with dementia, either at home or in a continuing-care site.


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The preliminary results found caregivers have faced increased levels of responsibility and burden of care through the pandemic, while also experiencing a decline in their own wellness. Their access to needed support systems was also inhibited.

“Caregivers were having troubles with getting supports set up as well as getting the resources they need to provide everyday care,” McGhan said.

“COVID-19 really highlighted some of the issues that were existing pre-pandemic, but it really brought forward to us the opportunities to address some gaps in the system that were there before.”

The survey and the pandemic also underlined the essential role of family caregivers in society, McGhan said.

She noted these caregivers are often inadequately supported.

“A family caregiver is really anyone — a family member, a friend, a neighbour — who provides help or assistance with everyday care that the person wouldn’t be able to provide for themselves. That includes emotional support, physical support, financial support,” McGhan said.

“They’re prevalent, they’re everywhere. They’re found in all different situations across the care continuum and they provide such an essential role. They need to be supported so they can stay healthy in their role and provide the best care to the person who has dementia.”

Of respondents, 69 per cent said they feel more socially isolated during the pandemic. Two-thirds said they’ve experienced increased strain, and 55 per cent reported a reduced quality of life.


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Being apart from his wife of nearly 33 years due to public-health restrictions also led to a considerable amount of anxiety for Gaetano.

“There’s also worry, because now you don’t see the person. Janet is not very verbal, so being able to sit in front of her, watching her movement, her emotions, her smiles, you knew how she was feeling. Now you don’t have any of that,” he said, adding video calls proved to be an insufficient solution.

“These issues need to be documented and they need to be heard by everybody so there can be some opportunities to make improvements.”

Researchers are now expanding their study after receiving additional funding, recruiting caregivers across Alberta to share how their experience changed as the pandemic progressed, and how caregivers in different areas of the province have been impacted.

The survey, open to adults caring for someone with dementia, can be found at bit.ly/FCGSurvey.

Dementia impacts 7.1 per cent of Canadians over the age of 65.


Twitter: @jasonfherring


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