Caregiving in Uncertain Times

Families that support their loved ones with dementia face increased challenges during COVID-19

Family care partners of people living with dementia in the community often rely on programs and services that offer recreation, connection and respite. Since the outbreak of COVID-19, the focus has been mainly on hospitals and long-term care homes. But the outbreak and its resulting mandatory lockdowns, social isolation and disruption of programs and services have created escalating challenges for family care partners that continue to go largely unrecognized.

For Sheena Bates, a family care partner to both her mother, Rita, and her husband, Paul, the “before times” — as in what life was like before the pandemic seized the world — were very different.

Rita is 98 years old, lives with late-stage Alzheimer’s in a long-term care home and uses a wheelchair. Paul, who is 63, lives with early-onset dementia. Before COVID-19, the family calendar was filled with visits to see Rita, as well as Paul’s weekly day programs with the Alzheimer Society of Calgary’s Club 36 and YouQuest. Both are programs that foster community and support for people living with dementia. Sheena and Paul also enjoyed regular meetings with a care partner social group called Memory P.L.U.S, run by Alberta Health Services. On top of it all, Sheena worked part-time in the field of environmental monitoring.

But in March 2020, escalating cases of the virus resulted in province-wide lockdowns, meaning in-person connection and support ceased almost overnight.

“COVID-19 changed our schedule dramatically. There was huge isolation,” says Sheena.

COVID-19’s Impact

Along with the cancellation of face-to-face events and recreation programs, Sheena and Paul were isolated at home. Both Rita and Paul were considered high-risk for COVID-19, which made visits impossible.

The couple had previously tried video-calling Rita at her care home, but she had trouble focusing on the screen so they knew this was not an option. Sheena became concerned about the effects of isolation on cognitive health for both her mother and husband.

Meanwhile, Paul increasingly needed more emotional support and help with daily tasks. With day programs unavailable and faced with the demands of caring for Paul full-time at home, Sheena decided to step away from her job.

Later, when the rules around visitations lessened, in-person outdoor visits continued to be challenging. Rita had a hard time recognizing Sheena with her mask on in an unfamiliar environment and, to Sheena’s dismay, her mother seemed to be deteriorating.

Supports Needed

Sheena’s experience echoes many other family care partners’ challenges in Calgary, says Gwen McGhan, an assistant professor in the Faculty of Nursing at the University of Calgary.

McGhan and a colleague, Deirdre McCaughey, an associate professor in the Cumming School of Medicine at the University of Calgary, have been researching the impact of COVID-19 on family care partners since the outbreak began. This summer, they surveyed 230 family care partners, from Calgary and surrounding areas, about their experiences.

“Overall, they’re absolutely struggling. The social isolation piece is huge for those in the community, as well as in long-term care,” McGhan says.

While challenges vary, especially if the person with dementia is at home or in long-term care, McGhan says there are common concerns. Responses from study participants revealed that 69 per cent of care partners are feeling more isolated overall, and 58 per cent reported an increase in time spent caregiving since the pandemic began.

“Family caregivers are finding that their family member with dementia is really deteriorating because they haven’t been able to have that engagement piece,” she says.

As for family care partners, the lack of access to respite programs means care is often 24/7, which can lead to burnout. The fact there is no clear idea of when programs will be up and running again only adds to that stress.

“A big thing that we’ve been hearing is just frustration across the continuum [of care],” she says.

Currently, McGhan and her colleague are continuing to gather input from families across the province. They aim to develop meaningful recommendations for decision and policymakers based on direct feedback from family care partners to help improve their situation.

“Family caregivers are really critical to our health-care system, and they need to be supported,” says McGhan.

A New Normal

As for Sheena, she is still figuring out what works for her, Paul and Rita in their new normal. Spending time outside, including walks, backyard visits and gardening, have all helped. But like all family care partners, Sheena needs more support and is trying to line up respite care again.

“I just keep reaching out, learning more and trying to stay engaged,” she says. [ ]