Continuing Care under COVID: Addressing caregiver distress, anxiety, and other unintended consequences of pandemic response

Dr. Matthias Hoben studies how the pandemic is impacting family/friend caregivers of older adults in Designated Supportive Living settings.

COVID-19 has had a devastating impact on older adults living in continuing care settings and on their family/friend caregivers. Given the risks of COVID-19 among older adults living in these settings, safety measures implemented during the pandemic (e.g., visitor and activity restrictions), were critical to prevent and manage outbreaks. 

However, these measures may have also had unintended consequences for the health and well-being of residents and their family or friend caregivers. As a result, the immediate and longer-term impact of COVID-19 on the involvement of family/friend caregivers in supporting the health and social care of clients in Designated Supported Living (DSL) or Assisted Living (AL) settings needs to be investigated. 

Faculty of Nursing Assistant Professor and Researcher Dr. Matthias Hoben is leading a study with co-lead Dr. Colleen Maxwell from the University of Waterloo to understand the impact of these measures on DSL/AL residents and their family/friend caregivers — and the consequences of changes in this care on the health and well-being of both family/friend caregivers and DSL/AL residents.

“Over 80% of all COVID-19-related deaths in Canada occurred among older adults living in nursing homes or DSL/AL sites. Therefore, health authorities had to act fast and rigorously, which they did. But not allowing families and friends to visit their loved ones had severe unintended consequences, such as loneliness and social isolation of clients, lack of advocacy and support provided by family members, even missed care and related consequences,” explained Hoben. “Therefore, family members experienced stress and anxiety, missing and worrying about their loved ones. So, the most immediate impact will be showing the extent of the problem — the types and amount of these kinds of unintended consequences.”

Hoben’s research has focused on improving the health and well-being of older adults in need of continuing care and their family/friend caregivers long before the pandemic hit. Prior to COVID-19, Hoben researched quality of care and quality of life in nursing homes and on the impact of healthcare policies on continuing care settings, people in need of care, their family/friend caregivers, and paid care staff. 

“When COVID-19 hit these populations so incredibly hard, it was almost inevitable to address these issues in my research,” he explained. 

The study — funded by Alberta Innovates — will start in September 2020 and finish in August of 2021. Hoben explains the work will take place in DSL homes in Alberta and in AL homes in British Columbia and will include 1000 family/friend caregivers from publicly supported DSL/AL homes between the two provinces. 

The team will conduct a survey with family/friend caregivers to assess the impact of COVID-19 and related safety measures on the health and well-being of DSL/AL residents and their family/friend caregivers. They will also link family/friend caregiver survey responses to family/friend caregivers' administrative healthcare data and to a facility survey assessing the facility's response to the pandemic.

“Further down the road, we will use our findings to help to identify improvements in COVID-19-related policies and practices," said Hoben. 

With better research, Hoben hopes to increase effective communication and engagement with caregivers and also to enhance staffing and services in future crises. 

"The goal is to strike the right balance between preventing and controlling future outbreaks while maintaining the health and well-being of clients and that of their family/friend caregivers."

Since they have policy makers and family caregiver advocates as members of their study team, Hoben is confident they’ll be able to implement their findings into critical improvements.