New Survey Shows Warning Signs with High Stress Levels for Alzheimer’s Caregivers during COVID-19 Shutdowns

Stress-related issues include sleep problems, difficulty concentrating, irritable behavior

Washington, D.C. (May 1, 2020) – Caregiving for loved ones with Alzheimer’s and other forms of dementia during the COVID-19 coronavirus closures is leading to high levels of symptoms often found in people exposed to severe stress, according to a new survey by the UsAgainstAlzheimer’s A-LIST®.

The new survey on the effects of the COVID-19 coronavirus on the Alzheimer’s community found that 92 percent of Alzheimer’s caregivers say their stress is higher now because of the coronavirus – a 10-point increase since a similar survey in late March.

In addition, 80 percent of these Alzheimer’s caregivers reported having one or more symptoms that are typically found in individuals experiencing severe stress. The top reported symptoms of caregivers include sleep problems (36 percent), vigilance/being ‘super alert’ (34 percent), difficulty concentrating (29 percent), irritable/angry behavior (25 percent) and trouble experiencing positive feelings (23 percent).

“Even before COVID-19, stress, isolation, and the intensity of 24/7 care are unrelenting for dementia caregivers,” said Meryl Comer, a former longtime Alzheimer’s caregiver for her husband and mother, and a founding board member for UsAgainstAlzheimer’s. “These results are a warning sign to the mental healthcare community that the unpaid workforce of millions of family caregivers may soon be their next patients from COVID-19, if we aren’t already.”

“These reported findings raise concerns about the impact that a chronic exposure to this unprecedented level of stress from the coronavirus and social isolation has on these caregivers,” said Dr. Magali Haas, CEO of Cohen Veterans Bioscience, which works on tests and treatments for veterans and civilians dealing with trauma-related and other brain disorders. “Further research to evaluate potential long-term consequences of this kind of caregiver stress is warranted.”

“The COVID-19 crisis is traumatic broadly and with caregivers, these survey results become clinically meaningful because they accentuate the constant “microtraumas” they encounter throughout the day,” said Dr. Dale Atkins, an author and psychologist who focuses on family relationships, aging well, and maintaining balance in life. “With the added stress factors of increased isolation, worry, fear, and financial concerns, associated with COVID-19, their ability to stay connected with support services in particular can put them too close to the edge.” 

Concerns about the often-serious illness from the coronavirus also impacted Alzheimer’s caregivers worried about their own health and what would happen to their loved one. Nearly three-quarters (73 percent) of those taking care of people with Alzheimer’s disease at home are unsure what would happen to their loved one if they got sick with the COVID-19 coronavirus. Four in 10 (42 percent) of caregivers are unsure what to do if their loved one with Alzheimer’s becomes sick.

The new survey, taken April 17-21, found that 29 percent of Alzheimer’s caregivers said the shelter-in-place for their family was creating additional tension about keeping their loved one at home, and 34 percent said it was hard for them or another family member to be close to a loved one with Alzheimer’s 24 hours a day.

Caregiver respondents wrote of their challenges with COVID-19 closures in the survey:

  • “I am a care partner for my sister who has been diagnosed with cognitive impairment,” one caregiver wrote. “Heading into week 6, 24/7, with her has been challenging for both of us. She does not go to the Senior Center and engage with the people there and I have lost some ‘my time.’”
  • “As my spouse’s caregiver, I do not get a break from his confusion and repeating questions. Working to stay patient with him. Also keeping him occupied is a challenge,” another wrote.

 Concerns about Care of Loved Ones in Assisted Living Facilities

A smaller set of 46 survey respondents whose loved ones with dementia are in assisted living facilities were concerned about visitation restrictions and challenges getting information about their loved one. More than nine in 10 (91 percent) are unable to see their loved one because of virus-related visitation restrictions.

“Not being able to see my husband, not knowing if he will still know me when finally I can see him is so depressing,” a survey respondent wrote. “Phone nor video talking will work since he is in late stages. My days [before coronavirus] were visiting him and my only communication was with the staff - now I have no one.”

Top concerns of caregivers with loved ones in assisted living facilities were:

  • their inability to know/accurately assess health status (74 percent)
  • the facility’s ability to adequately care for the loved one (46 percent)
  • the facility’s ability to manage the situation (41 percent)

More than two in five (41 percent) said they are less confident about the level of care for their loved one at this time. Despite these circumstances, just 15 percent of caregivers said they were concerned enough to consider removing their loved one from the facility.

About one in six (17 percent) said they had heard of cases of COVID-19 in the assisted living facility at the time of this survey (April 17-21).

A summary of the April survey results can be seen here.

Survey Methodology: The IRB survey, taken April 17-21, 2020 by the UsAgainstAlzheimer’s A-LIST®, had 750 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 197 responses, with a subset of 46 respondents who said they had a loved one in an assisted living facility. In some questions, such as a list of a range of effects of the virus, respondents could select more than one response.

The UsAgainstAlzheimer’s COVID-19 survey series is supported in part by the Eisai USA Foundation, and input on survey design and analysis was provided by Cohen Veterans Bioscience, a non-profit research biotech dedicated to fast-tracking the development of diagnostic tests and personalized therapeutics for the millions of veterans and civilians who suffer the devastating effects of trauma-related and other brain disorders.

About UsAgainstAlzheimer’s

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.