Joseph E. Gaugler, Ph.D.; Image credit: University of Minnesota
Joseph E. Gaugler, Ph.D.; Image credit: University of Minnesota

A new survey offers plenty of ideas for getting long-term care providers on the same page as family caregivers during the COVID-19 pandemic, investigators say.

Investigators surveyed family caregivers of long-stay residents with dementia living in LTC facilities between June 2020 and June 2021. The open-ended surveys included 125 caregivers supplemented with interviews with 20 of those participants.

Family caregivers expressed concerns about COVID-19 infection. They also reported key challenges, such as:

  • Difficulty maintaining contact with relatives because of visiting restrictions; 
  • A lack of information about relatives’ health and well-being;
  • Worries about overburdened LTC staff;
  • The impossibility of returning relatives home from the LTC facility;
  • And fears about relatives dying alone. 

They also identified the resources, strategies and practices that they perceived as helpful. These included effective infection prevention within the LTC facility, good communication with LTC staff, and creative strategies for connecting with their relatives, Joseph E. Gaugler, Ph.D., of the University of Minnesota, reported.

For example, survey respondents advocated for vaccination and testing protocols that maximize family caregivers’ opportunities for in-person contact with relatives, as the alternative visiting modalities were often unsatisfactory or unfeasible. The majority (79%) of survey participants said that visiting restrictions were a key stressor, and only 21% highlighted the alternative visiting modalities provided by the LTC facility as a helpful strategy. 

“Instead of focusing on communication workarounds, maximizing opportunities to visit in-person with the help of consistently-enforced vaccination and testing may be more helpful to family caregivers,” Gaugler and colleagues suggested.

Caregivers also wished to be informed regularly about individual residents’ needs and status, and that bereavement supports for family members would address complicated grief and feelings of loss.

The study results — especially the finding of discrepancies between caregivers’ and experts’ perspectives — highlight the need to create more robust, family-centered models of LTC where caregivers are effectively integrated into policy development and care,” Gaugler and colleagues concluded. 

“Such models would help avoid adverse consequences not only in the current crisis, but also beyond the pandemic when caregivers’ perspectives are potentially neglected in LTC,” they said.

Full findings were published in the December issue of JAMDA.