UsAgainstAlzheimer’s Survey Finds Significant Coronavirus Impacts on Alzheimer’s Caregivers

More Isolation, Higher Stress and Increased Concerns about COVID-19 Infections

Washington, D.C. (April 8, 2020) – Nearly three-quarters of those who are taking care of people with Alzheimer’s disease at home are unsure what would happen to their loved one if the caregiver got sick with the COVID-19 coronavirus, according to a new survey by UsAgainstAlzheimer’s A-LIST®.

In addition to the 71% of caregivers unsure of what would happen if they became infected, 33% said they were unsure what to do if their loved one with Alzheimer’s becomes sick. The survey also found that coronavirus restrictions at assisted living facilities have meant that many family members are unable to see or assess the health status of their loved one.

The UsAgainstAlzheimer's (UsA2) survey results give insights into the challenges and concerns of the broad Alzheimer’s community of patients, caregivers and others from the COVID-19 coronavirus, which has resulted in widespread social distancing, isolation and quarantine orders, business closings and growing numbers of cases throughout the United States.

“Alzheimer’s family caregivers are frontline healthcare workers in their home, and if they get sick, what happens to the patient?” said Meryl Comer, a long-time caregiver for her husband and mother and UsA2 founding Board member.  “Family caregivers already had higher levels of loneliness and isolation, and the coronavirus restrictions have made them even more isolated from family and friends, more stressed and more concerned about their future financial health.”

Greatest Impacts Felt by Current Caregivers

The key survey findings for caregivers include:

  • 82% percent of caregivers say their stress is higher now because of the coronavirus.
  • 74% of caregivers are more concerned about their financial health and their family’s finances than before the coronavirus.
  • 37% said the shelter-in-place for their family was creating additional tension about keeping the loved one at home, and 24% said it was hard for them or another family member to be close to a loved one with Alzheimer’s 24 hours a day.
  • 32% of caregivers want additional government support for their caregiving and 18% want help with Medicare, Medicaid or other insurance benefits.
  • 31% of caregivers say they are getting less information than they need to provide care and support to a loved one, with 64% getting the information they need.

Comments in the survey show the coronavirus effects on caregiving and daily family routines, with one writing: “No adult day care for my husband, difficult getting food, and no break from 24/7 care for husband with Alzheimer’s,”

“The isolation, at times, has been a black hole of sorts,” wrote one survey respondent. Another said: “Spouse has dementia and cannot understand why we can no longer go to places (library, restaurants, etc). Constantly asking to go somewhere and having same conversations over and over and over.”

Heightened Stress about Care of Loved Ones in Assisted Living Facilities

A smaller set of survey respondents who have loved ones with Alzheimer’s or dementia in assisted living facilities have higher stress because of visitation restrictions at the facilities.

  • 74% are unable to see their loved one because of virus-related visitation restrictions.
  • 75% say their stress levels are significantly higher.
  • 67% say they are unable to assess the health status of their loved one.
  • 35% are less confident about the level of care for their loved one.
  • One the other hand, 33% say they are more confident about care of their loved one and 37% are relieved because they do not believe they could have managed the care for their loved one at home.

“I can't visit either of my Dementia affected parents. I've had difficulty contacting their providers to order medicine and make changes to their meds,” a survey respondent wrote.

“I can only visit my husband standing at window in all sorts of weather, kneeling on concrete to get in his line of vision,” another wrote.

Key Findings from the Entire Group of UsAgainstAlzheimer’s Survey Respondents

While the effects of the coronavirus were highest among caregivers, the survey found more stress, isolation and financial concerns for the future among the entire group of respondents, which also included people living with the disease, former caregivers, people at significant likelihood of developing Alzheimer’s, and those interested in brain health and advocacy.

  • 76% say their stress is higher, including 18% saying it is significantly higher.
  • 57% feel more isolated.
  • 72% are more concerned about their finances and their family’s finances, including 27% who are much more concerned.

So far, nearly 8 in 10 (79%) respondents were not reporting many current effects of the COVID-19 isolation orders on their ability to work and provide financially for their families.  In large part, people living with Alzheimer’s and their caregivers are older and retirement-eligible, which could account for the low job impacts among survey participants. About 8% of the overall survey respondents reported reduced hours of work, 6% said they had to take forced unpaid time off, and 2% said they were required to take vacation.

The respondents say they are getting information about the coronavirus from television (62%) news sites (34%), state and local government sites (33%), non-government health sites (21%), and federal government sites (20%).

The full survey results can be seen here.

Survey Methodology: The survey, taken March 25-30 by the UsAgainstAlzheimer’s A-LIST, had 807 responses overall from people living with Alzheimer’s or dementia, current or 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 198 responses, with a subset of 52 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.


About UsAgainstAlzheimer’s (UsA2)

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.