Survey Spotlights Effects of Pandemic on Alzheimer’s Patients, Caregivers

A Year of Stress, Isolation, Decline

A new UsAgainstAlzheimer’s survey shows the coronavirus pandemic and related closures over the past year led to declines in people living with Alzheimer’s disease, disrupted daily routines, and caused severe and chronic stress on caregivers left isolated without relief or support.

The survey was conducted in March, as the U.S. approached the one-year mark of the widespread coronavirus-related shutdowns across the nation. It offers a snapshot of the devastating effects of COVID-19 and the resulting closures on people living with the disease, their caregivers, and their families. This is the eighth COVID-19 survey by UsAgainstAlzheimer’s over the past year.

Since coronavirus restrictions, closures, and isolation have been in place, both caregivers and people living with the disease have seen notable declines.

“I am taking my anger and frustration out on my mother way too much. It’s very hard to not react or get angry with a dementia patient.”

Nearly three-quarters (72%) of caregivers observed a decline in their loved ones’ memory or behaviors, with nearly 31% reporting a significant decline. In addition, nearly half (47%) of the 38 respondents diagnosed with mild cognitive impairment, Alzheimer’s, or dementia said they believe their cognition has declined.

Caring for the Caregivers

Eighty-four percent of caregivers reported having one or more stress symptoms typically found in people experiencing severe stress. Top-reported caregiver symptoms associated with stress include vigilance or being ‘super alert’ (44%), loss of interest in activities (40%), trouble experiencing positive feelings (31%), sleep problems (30%), difficulty concentrating (27%), and irritable/angry behavior (21%).

These high levels of severe stress for caregivers have been seen in the surveys throughout much of the past year.

“I’ve had no respite for a year, and my anger and stress has skyrocketed,” one caregiver wrote. “The toll is more on me than him because I’m still being the caregiver of my FTD [frontotemporal dementia] husband.”

Another caregiver wrote, “I am taking my anger and frustration out on my mother way too much. It’s very hard to not react or get angry with a dementia patient.”

The effects of severe stress over such a long period raise concerns for caregiver support groups.

“These results from UsAgainstAlzheimers regarding caregiver stress are disturbing, but not surprising,” said Dr. Jennifer Olsen, CEO of the Rosalynn Carter Institute for Caregivers. “This research should serve as a call to action that we have a community of caregivers that have been struggling with the combined stress of caregiving and COVID-19, and we cannot develop plans to reopen society without considering caregivers as a population at risk. Caregiver health and well-being should not be an afterthought in building the programs and policies needed in a post-pandemic world.”

Petra Niles, senior manager of African American Services, Education, and Dementia Care Networks at Alzheimer’s LA, noted that “many continue to view taking care of their loved ones as a privilege accompanied by many challenges, and the additional weight of COVID-19 may be seen by some as yet another challenge to be managed one day at a time, and self-care is neglected. These survey findings clearly identified the need for increased support for caregivers. More attention and effort need to be placed on the types of support that fits the individual caregiving experience. One size does not fit all, as culturally specific resources must be considered.”

Among the other survey findings, 81% of caregivers felt more isolated than before coronavirus restrictions, and 57% felt more lonely than before coronavirus restrictions. Current caregivers say they need and cannot get access to support groups (24%) and home health aides (18%). Finally, 22% of caregivers say physical or mental-health changes related to the COVID-19 pandemic have affected their ability to care for their loved one.

Strong Interest in the Vaccine

More than half (56%) of survey respondents had already had a COVID-19 vaccine, a much higher percentage than the national vaccine rate. This likely is due to the fact that more than 60% of the respondents were over age 65, which puts them in a higher-priority category for vaccinations.

Most of the remaining survey respondents were trying to get a vaccine appointment or were not yet eligible. Only 6% of the respondents said they were not planning to get the vaccine, and about 2% were unsure. By comparison, a national survey in mid-February by the Kaiser Family Foundation found that 55% had already had or planned to get a vaccine, 22% were waiting for more information, 15% were definitely not getting a vaccine; and 7% said they would get one only if required to do so for work or school.

Getting the vaccine offers hope for many survey respondents they will be able to visit loved ones in long-term-care communities with less fear of transmitting the coronavirus. One respondent described the vaccine as offering “freedom.”

“I hope I have a better chance of being able to visit my elderly mum who is withering from loneliness,” another survey respondent wrote.

But for others, the vaccine has come too late. “Life as we knew it before March 2020 will no longer be, because the people that were once in our lives that died from COVID-19 will not come back,” one wrote. “And we still need to be on our guard for other viruses since not everyone was careful enough before the vaccine was available.”

The UsAgainstAlzheimer’s survey received 647 responses from people living with Alzheimer’s or another dementia, current and former caregivers, people with a significant likelihood of developing the disease, and those interested in brain health. Of the total respondents, 599 described their status. Former caregivers were the largest group with 153 responses, followed by current caregivers with 147 responses. Of the 143 caregivers completing the survey, a subset of 27 respondents who said they had a loved one in an assisted-living facility. Thirty-eight individuals with Alzheimer’s disease or mild cognitive impairment also took the survey.