New UsAgainstAlzheimer’s survey shows continuing severe stress for caregivers

Washington, D.C., (July 31, 2020) — The ongoing COVID-19 closures and restrictions, which have stretched nearly five months, appear to be having a detrimental effect on the memory and behaviors of people living with Alzheimer’s and dementia, according to a new UsAgainstAlzheimer’s A-LIST® survey.

Two-thirds (67 percent) of the 167 Alzheimer’s caregivers in the survey said they observed a decline in their loved ones’ memory or behaviors since the coronavirus-related restrictions, closures, and isolation have been in place. Nearly a quarter of these – 23 percent – said the decline had been significant. Another 28 percent of caregivers said there had been no change in the memory or behaviors of the person living with the disease.

Many of the survey’s 40 patient respondents saw a decline too, as 40 percent said their cognition had declined somewhat and another 2 percent reported significant declines. The other patient respondents – those diagnosed with mild cognitive impairment, Alzheimer’s or another dementia there had been no change.

The virus-related closures and restrictions have disrupted lives across the nation, with significant effects on people living with Alzheimer’s and related dementias. Adult day services are often closed, home health aide visits have been curtailed, and daily travels and interactions have been severely limited in the efforts to stop the spread of the disease.

“Since my mother has not seen me since February, she has forgotten who I am,” one caregiver wrote. “Isolating dementia patients has been the worst thing for them.”

“I cannot see or touch him; he is in a home and has deteriorated severely,” another caregiver wrote.

Dr. Angela M. Allen, Clinical Instructor and Barrett Honors Faculty in the Hartford Center of Gerontological Nursing Excellence at Arizona State University’s College of Nursing, noted the effects on both patients and caregivers. “Many of our patients and their caregivers are experiencing social uncertainty due to this novel pandemic, coronavirus, and the stages of dementia,” said Allen, an expert in cognitive impairment and caregiving. “We as clinicians have to be prepared to meet the needs of both the patient and the caregiver.”

Caregiver Physical and Emotional Stress Affecting Care

More than 8 in 10 (83 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 four UsAgainstAlzheimer’s monthly surveys. The top reported stress symptoms in July included: sleep problems (38 percent), difficulty concentrating (31 percent), vigilance/being ‘super alert’ (36 percent), trouble experiencing positive feelings (29 percent), loss of interest in activities (37 percent), and irritable/angry behavior (27 percent). The level of respondents reporting these symptoms is largely unchanged from the June survey.

The continuing high stress is having an effect on care. More than a quarter (27 percent) of caregivers said physical or mental health changes related to the COVID-19 pandemic and isolation have affected their ability to care for their loved one. The July survey was the third month in a row where at least 25 percent of caregivers said their stress was affecting care.

“Higher stress leads to increased impatience and depression on my part,” a caregiver wrote.

“I am being the nurse, caregiver, housekeeper, food service provider, activity director, PT, etc. for my spouse,” one caregiver wrote. “It is so much for just me.”

“I do not feel I am giving my loved one the positive attitude all the time,” a caregiver said. “Sometimes I let things go longer than I should because I feel drained.”

The July survey found that 30 percent of caregivers said they needed more access to outside support groups – but were unable to get it. In addition, 17 percent of caregivers have been unable to get the home health aide support they need.

Visitation Limits Loosening in Long-Term Care Communities

A smaller set of 31 respondents, who reported having a loved one with Alzheimer’s or another dementia in a long-term care community, had higher stress because of visitation restrictions and challenges getting information about their loved one. The July survey showed that more people were able to visit their loved ones in a long-term care community, growing numbers of COVID-19 tests, and more cases of COVID-19 in the communities where their loved one lived.

· More than two-third (68 percent) were unable to see their loved one because of virus-related visitation restrictions, a decline of 23 points from the June survey.

· Nearly all (94 percent) supported required COVID-19 testing of all nursing home residents and staff, with the remainder unsure or having no opinion.

· More than 7 in 10 (71 percent) said one of their top stressors was the inability to know or accurately assess the health status of their loved one in a facility.

· Caregivers were willing to consider a range of safeguards when visiting their loved one in a long-term care community: wearing personal protective equipment (94 percent), socially distanced visiting (90 percent), getting tested for COVID-19 before visiting (65 percent), video visiting as an alternative to in-person visiting (58 percent), and paying for COVID-19 testing before visiting (32 percent).

· 58 percent said they had heard of cases of COVID-19 in the long-term care community at the time of this survey (July 16-21), up 8 points since the June survey, 27 points since the May survey, and 41 points higher than the April survey.

· Nearly three-quarters of caregivers (71 percent) said their loved one had been tested for COVID-19 (up from 47 percent in June). Another 19 percent said their loved one had not been tested, and 10 percent didn’t know.

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Survey Methodology: The survey, taken July 16-21, 2020 by the UsAgainstAlzheimer’s A-LIST®, had 739 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, 667 described their status. Current caregivers were the largest group with 167 responses. Of the 166 caregivers completing the survey, a subset of 31 respondents said they had a loved one in an assisted living facility. 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 CaringKind and Cohen Veterans Bioscience.

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.