Continuing Severe Stress for Alzheimer’s Caregivers during Pandemic Now Combined with Worries about COVID-19 Effects on Upcoming Holidays
New UsAgainstAlzheimer’s survey finds that 90 percent of caregivers expect that the coronavirus will have negative effects on their holiday plans
Washington, D.C., (October 28, 2020) – A new UsAgainstAlzheimer’s A-LIST® survey of the Alzheimer’s community shows a tough combination of more than six months of severe stress symptoms for Alzheimer’s caregivers coupled with new concerns about the effects of COVID-19 on the upcoming holidays.
In the survey, 90 percent of current Alzheimer’s caregivers – and 84 percent of all of the survey respondents – expect negative impacts to their upcoming holiday plans, such as fewer family interactions, holiday traditions or parties.
“No indoor parties, no big family meals, no sitting in the living room opening presents and no indoor restaurant meals with groups of friends,” one respondent wrote. “It won't be stress as much as sadness. I'll miss entertaining and gifting my kids and grandkids.”
“I believe it is going to be very stressful; we are already discussing Thanksgiving with our children and it doesn't look like we will all be together as is the tradition,” one survey respondent wrote.
This is on top of severe stress, as 86 percent of Alzheimer’s caregivers reported having one or more stress symptoms typically found in people experiencing severe stress. The UsA2 surveys have shown these high severe stress levels on 80 percent or more of caregivers for six consecutive surveys since April. Top stressors include being ‘super alert’, sleep problems, loss of interest in activities and difficulty concentrating.
A respondent said: “Stress on stress on stress on stress is STRESSFUL!”
One in five caregivers (20 percent) say their care of their loved one has been affected by the mental and physical health changes on the caregivers related to the pandemic.
In addition, the latest survey shows that ongoing COVID-19 closures and restrictions continue to have a detrimental effect on the memory and behaviors of people living with Alzheimer’s and dementia.
Specifically, 70 percent of caregivers reported seeing memory and behavior declines in their loved ones with Alzheimer’s or another dementia during the pandemic. In addition, nearly half (47 percent) of the surveys 38 patient respondents – those diagnosed with mild cognitive impairment, Alzheimer’s or dementia –said they believe their cognition has declined.
Survey Methodology: The survey, taken October 8-14, 2020 by the UsAgainstAlzheimer’s ALIST®, had 567 responses overall 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, 523 described their status. Current caregivers were the largest group with 145 responses. Of the 142 caregivers completing the survey, a subset of 24 respondents who said they had a loved one in an assisted living facility. Of caregivers, 10% were care partners to individuals with mild Alzheimer’s disease or dementia, 53% were care partners to those with moderate disease and 34% oversaw severe cases (with only 3% unsure). 38 individuals with Alzheimer’s disease or Mild Cognitive Impairment also took the survey. This research is overseen by an Institutional Review Board (IRB.) The UsAgainstAlzheimer’s COVID-19 survey series is supported in part by the Eisai USA Foundation, naviHealth and Biogen. with research support from Cohen Veterans Bioscience.
UsAgainstAlzheimer’s (UsA2) is a disruptive advocacy and research-focused organization that is pushing for expanding treatments and accelerating towards a cure for Alzheimer’s disease. UsA2’s transformative programming is laser-focused on proactive brain health across the lifespan and understanding what matters most across the lived experiences of those affected by Alzheimer’s in the service of preventing, treating and curing this disease. We are working to ensure that all communities have their voices heard and get a chance to be brain healthy from the earliest years while building resistance against possible cognitive decline.