Studying caregiving of spouses with dementia during the COVID-19 pandemic

Toni Calasanti was conducting a study on older adults who care for spouses or partners with Alzheimer’s disease or dementia when the COVID-19 pandemic took hold in the United States.

The Virginia Tech sociology professor saw the changes and challenges of the pandemic as a new opportunity for insights. So she applied for supplemental funding to augment the National Institute on Aging grant she received in 2019. Working with her on both grants is Brian de Vries, a San Francisco State University professor emeritus who is serving as a consultant.

The National Institute on Aging allows current grantees the opportunity to extend their project research, but they have to apply for each extension as a separate, competitive grant. With support from the Virginia Tech Institute for Society, Culture, and Environment, she applied for this.

Calasanti received the additional funding and the team will begin its yearlong research this month. The original grant was for a qualitative study on the differences of same-sex and heterosexual older adults who care for their spouses or partners with Alzheimer’s disease or dementia. 

Calasanti said the original grant research seeks to understand how caregivers draw from their skillsets and resources, learned over the course of a lifetime based on their sexual orientation and perceived gender identity, when taking care of their spouses or partners. How does the perception affect the division of labor in their relationship? What areas are problematic? What strategies are more effective for them and help them perform their work?

Amid the pandemic, caregiving has changed, and Calasanti and de Vries will study the impact of COVID-19 and social or physical distancing across time and caregiving groups. They will re-interview participants from the original study to identify similarities and differences in caregiving, along with the challenges and the strategies the caregivers now face.

In addition, for participants not interviewed during the original grant, the team is incorporating questions from the original study. This will extend the researchers’ ability to compare data across groups.

“The point of the grant is to see how the COVID-19 crisis affects caregiving because it’s going to impact two ways, on the caregiver and the care receiver,” Calasanti said. “Established routines are important for people with dementia, and when those routines change, all kinds of issues arise for care receivers. And there’s some belief that the lack of stimulation will accelerate the dementia.”

Calasanti gives the example of a couple who enjoy a daily meal at the same restaurant, ordering the same dishes day after day. Suddenly, the couple can no longer follow their routine because of a shelter-in-place order or because the need for physical distancing has become a concern. The care receiver may understand the explanation for the change in routine when first told, but then he or she may forget that information. This can lead to behavioral responses such as anger or paranoia — why are they not being allowed outside of their home? Why are they being kept from friends and family? 

“As for caregivers, they’re not only dealing with those new responses, but a lack of support,” Calasanti said. “They may not have their adult day program anymore because so many facilities have closed. No support groups are available. Sometimes they don’t even have family to help. One person I interviewed had said in March, right before everything shut down, that as a couple, they would visit his wife’s sisters on weekends. A group of friends would also take her out to lunch. That all disappeared.”

But Calasanti has heard other examples offering an opposite viewpoint. One couple’s lives are improving because of changes caused by the pandemic.

“For the caregiver, it was such a strain to get her wife ready to go out,” she said. “It took so long to get her dressed and into the car. And the person I interviewed had a disability, so it was hard for her. Now other people get groceries for them, and there is more of a natural flow to their day. The pandemic made things much easier.”

These are examples of experiences that the researchers will collect and analyze. Calasanti said knowledge gained from the study will have implications for both policymakers and practitioners who seek to develop effective interventions to support caregivers and prevent negative physical and mental health outcomes.

For those who no longer have access to adult day services, for instance, the research may provide examples of what caregivers now need in their home environments, from outside services to equipment. Since the pandemic occurred in the middle of Calasanti’s original grant, the team will now have a comparison of before and after results that were not available when their research began in 2019. 

In addition, the researchers will look at how income disparities affect Alzheimer’s and dementia caregiving in heterosexual and same-sex households.

For both the original and supplemental grants, the team is still recruiting for same-sex couples where one is a caregiver for the other who has Alzheimer’s disease or dementia. Interviews last about an hour and a half. As conditions permit, the researchers may conduct these in person, by phone, or through Zoom or Skype. As a small token of appreciation, participants will receive a $30 gift card. Contact Calasanti at toni@vt.edu for more information. 

Written by Leslie King