Ongoing COVID-19 Pandemic Causing Severe Stress for Alzheimer’s Caregivers and Affecting Care for People with the Disease
Washington, D.C., (June 26, 2020) The COVID-19 pandemic and restrictions, now in their fourth month, have created severe stress for Alzheimer’s caregivers that is increasingly affecting care for their loved ones, according to findings from the fourth UsAgainstAlzheimer’s A-LIST® survey.
Closures, stay-at-home orders, and fear of COVID-19 infection means family caregivers are caring for their loved ones at home 24/7, with little or no help from home health aides or day services.
More than 8 in 10 (82 percent) of caregivers reported having one or more stress symptoms typically found in people experiencing severe stress. These severe stress findings have been at 80 percent or above for the past three surveys. The top reported stress symptoms in June included: sleep problems (41 percent), difficulty concentrating (36 percent), vigilance/being ‘super alert’ (33 percent), trouble experiencing positive feelings (31 percent), loss of interest in activities (31 percent), and irritable/angry behavior (25 percent).
The survey findings point to a perfect storm of stress.
“Never has the convergence of major economic losses, dramatically higher vulnerability of health status for both care partner and patient, and devastating social isolation, come together so rapidly as a perfect storm – causing unpredictability and stress on a large scale," said Dr. Sandra Bond Chapman, Founder and Chief Director of the Center for BrainHealth® at The University of Texas at Dallas and author of Make Your Brain Smarter. “Making matters even worse, there is no end in sight – yet.”
Caregiver Physical and Emotional Stress Affecting Care
The physical and emotional impacts are taking a toll on caregivers – and on the care they provide their loved one. Nearly one in three (31 percent) of dementia caregivers said physical or mental health changes related to the COVID-19 pandemic and isolation are affecting their ability to care for their loved ones. This is a five-point increase over the May survey.
“At the same time as my dad is rapidly declining, my husband is struggling with depression and memory issues to the point of losing his job after exhausting FMLA (Family and Medical Leave Act),” one caregiver wrote. “I am stretched very thin and feel drained and overwhelmed.”
The June survey found that 28 percent of caregivers said they need more access to outside support groups – but say they are unable to get it. In addition, 18 percent of caregivers have been unable to get the home health aide support they need.
“On a daily basis, I feel more stress,” one caregiver wrote. “This mental condition sometimes manifests in less sleep; more eating; more crying; and more muscular pains.”
Chapman said, "When you feel overwhelmed, your brain’s natural stress response depletes your ability to think clearly and calmly.”
What would happen if someone in a home became sick with the COVID-19 coronavirus has been a consistently high area of concern throughout the four UsAgainstAlzheimer’s surveys. Nearly three in four (71 percent) of Alzheimer’s caregivers were unsure what would happen to their loved one if the caregiver became sick with COVID-19, and 38 percent of caregivers are unsure what to do if their loved one with Alzheimer’s became sick.
People Living with the Disease – Higher Stress, Isolated and Signs of Advancing Decline
The UsA2 survey included 50 respondents living with a diagnosis of Mild Cognitive Impairment (MCI), Alzheimer’s, or another dementia and 52 percent reported having more stress since the COVID-19 restrictions went into place in March.
A third (34 percent) of respondents living with dementia or MCI said they wanted support services but are unable to get them since the COVID-19 shutdowns began, including pastoral care or religious services (13 percent), support groups (11 percent), or family support (11 percent.)
Caregivers reported in survey comments that they are seeing loved ones with dementia deteriorating more quickly as a result of the shutdowns and isolation.
“My father is very lonely and depressed, in turn it makes me depressed,” a caregiver wrote in a comment on the survey. “I see a greater health decline in him in a short period of time.”
Another wrote: “Mom's isolation has caused her to have delusions...it's the lack of people contact and the constant news talking about the virus.”
Survey Methodology: The survey, taken June 9-14, 2020 by the UsAgainstAlzheimer’s A-LIST®, had 682 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 or Alzheimer’s advocacy. Current caregivers were the largest group with 190 responses, with a subset of 34 respondents who said they had a loved one in an assisted living facility. In some questions, respondents could provide more than one answer.
The UsAgainstAlzheimer’s COVID-19 survey series is supported in part by the Eisai USA Foundation, naviHealth and Biogen, with research support from Home Instead Senior Care and 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.