Pandemic’s impact on dementia caregivers

Photo by Steven HWG

COVID-19 sent the lives of every Albertan into upheaval.

But a recent study performed by the University of Calgary has revealed the extra burden that was placed on those caregiving for people living with dementia.

The findings report a significant increase in the responsibility of caregivers, alongside a decline in the wellness of people living with dementia.

A total of 230 family caregivers were polled as to their experiences over the summer of 2020, and the respondents ranged from those caring for a person with dementia at home, at assisted living facilities or at long-term facilities.

The average age of a family caregiver was 59 and they were overwhelmingly women with 77 per cent of the respondents. Almost half — 46 per cent — were the spouse of those for whom they care and 27 per cent reported they spent more than 40 hours a week on caregiving responsibilities.

The policies implemented by federal, provincial and local governments to stop the spread of COVID-19 led to unintended consequences for family caregivers and the people living with dementia for whom they care. Of the caregivers surveyed who care for a person living with dementia in a long-term care facility, 46 per cent responded they believed the restrictions in long-term care facilities went beyond what was needed.

In addition, 84 per cent of them responded that they were willing to take additional training with personal protective equipment (PPE) and infection procedures if it meant ensuring continued access to the person for whom they are caring.

However, 13 per cent raised a concern over whether the use of PPE such as masks might confused or disorient those for whom their caring, or create communication issues if the individual is reliant on lip reading.

“I believe that if I were to wear a mask of any kind over my face, it would scare my mom if not confuse her even more as to who I am,” one respondent answered.

“I would like to wear a face shield rather than a mask so that my mother (who has dementia and is profoundly deaf) can see my face and mouth,” another said.

Moreover from just visitation and access, the respondents stated that the COVID-19 policies greatly impacted their abilities to maintain a level of care due to reduced access to supports and resources.

These resources include items like transportation, day programs, legal services and support groups.

“I’m not sure that the system evolved quick enough to help support caregivers, so I think there are more innovative ways that they could have pivoted,” one respondent stated. “We have these people in homes, in the community, we need to figure out how do we continue to offer support at a low risk kind of a way.”

While those who were giving care to an individual residing in a long-term facility had dramatically reduced time spent together, those who were providing care at home had the opposite — yet just as devastating — experience.

Family caregivers without access to resources such as day programs stated they had no respite or had it severely reduced, with many of them saying they were struggling to cope.

“It’s a hard struggle all by yourself here, sometimes I just, I just want to run away and not do anything anymore,” one respondent said.

“it’s been hard, I mean at least I had my work to go… I mean “If you don’t come and help, I’m done, I cannot do this anymore.” Said another. “The only time I was ever alone was driving to [work] and driving back, and that’s 12 minutes each way. Now I don’t even have 12 minutes, and yeah it’s very hard.”

Overall, the respondents reported higher levels of strain due to COVID-19 measures: 69 per cent said they were feeling more socially isolated, 55 per cent experienced a reduced quality of life and 78 per cent said they experienced a noticeable increase in one or more of the responsive behaviours associated with dementia in those they were caring for, such as agitation or depression.

The report ends by making three recommendations to the provincial government: ensuring caregiver support is consistently available, making sure there is clear and correct information available and that there can be continued access to care recipients in supportive living facilities.