The COVID-19 pandemic and closures have had disproportionate and dangerous effects throughout the Alzheimer’s community as the coronavirus crisis is well into its third month in the United States.

The impacts are widespread and significant. Many people living with Alzheimer’s disease or other dementias are feeling more anxious and lonely. Caregivers are seeing more agitation, suspicions and marked declines in their loved ones with the disease. Visitor bans in nursing homes and other facilities make assessing the health of a family member with dementia much harder – as more facilities report coronavirus cases.

Closures, stay-at-home orders, and fear of COVID-19 infection mean little help for family caregivers from home health aides or daycare programs, and the 24/7 care needs are stressful and exhausting. What will happen to their loved one if the caregiver gets the coronavirus? Where can they get a break? The physical and emotional impacts are taking a toll on caregivers – and on the care they provide their loved one.

The COVID-19 pandemic’s widespread effects are seen through a series of surveys conducted by the UsAgainstAlzheimer’s A-LIST® of the Alzheimer’s community – people living with the disease, caregivers with loved ones at home, and those with loved ones in nursing homes.

“These survey findings speak to the abandonment felt by those affected by Alzheimer's disease and related disorders and how it is unconscionable to have been this ill-prepared," said Terry Fulmer, PhD, RN, FAAN and President of the John A. Hartford Foundation. "We have already seen the devastating effects of Hurricane Katrina, Superstorm Sandy and now COVID-19 as examples where those with Alzheimer's and other dementias and their caregivers are left to fend for themselves in the early days of catastrophes. There will be another crisis. Will we be ready? There can only be one answer and this heart wrenching survey data tell us all why.”

The surveys include written comments by people living with the disease and caregivers that describe the isolation, worries and frustrations.

“My husband, who has Alzheimer’s, has lost a significant amount of ground cognitively,” one caregiver wrote in early May. “He requires my constant attention 24/7. He has not been able to go to daycare for 8 weeks now, which gave me some respite. I need a break.”

She is just one of many caregivers dealing with these challenges.

“At CaringKind in New York City, we are hearing from increasingly desperate caregivers who are now providing care, without relief, 24 hours a day for their relative with dementia,” said Jed A. Levine, President and CEO of CaringKind. “The COVID-19 pandemic has added to their anxiety, exhaustion and feelings of uncertainty. Callers to our Helpline, our support group members and attendees at our education programs and cultural events – all offered virtually – are so grateful for the opportunity for support, connection, the realization that they are not alone, and to learn ways to manage this new and challenging reality."

People Living with the Disease – Stressed and Isolated

The UsA2 surveys include respondents living with a diagnosis of Mild Cognitive Impairment (MCI), Alzheimer’s, or another dementia. In the latest survey, taken May 8-13, 52 respondents living with a diagnosis report having more stress (65 percent) and feel more isolated (60 percent) since the COVID-19 restrictions went into place in March.

More than four in 10 (42 percent) of these respondents with a diagnosis also believed that their care partner’s stress level is higher (as a result of the coronavirus outbreak.

More than a third (37 percent) of respondents living with dementia or MCI had concerns about their own health since the coronavirus crisis started. In addition to the survey responses, written comments to open-ended survey questions survey show increased anxiety and loneliness among people with a diagnosis.

In their written comments, people living with the disease used words such as “depressed” and “anxious” to describe themselves during the COVID-19 closures.

“Extreme anxiety about leaving the house. Dementia causes me to get lost sometimes while walking, driving, etc., and there are very few people out that might help me,” one man said.

“I feel like I’m hanging on by a thread mentally,” one woman wrote.

“No relationships with family and friends; I keep wondering when this virus will end,” one man wrote.

“I prefer time to myself, but being forced to isolate and inability to have some time with others has affected my mental state very adversely,” another woman said.

“The little social contact I had before has now almost entirely diminished,” said one man. “Seem to be more forgetful and harder to say what I mean,” another wrote.

Caregivers Seeing Increased Confusion, Accelerated Decline in Loved Ones

Caregivers say their loved ones with dementia are deteriorating more quickly as a result of shutdowns and isolation. Loved ones are more confused and agitated, and their dementia symptoms are getting worse, caregivers reported in written comments to survey questions. And caregivers feel they can’t manage alone without outside help, which is made more challenging with social distancing.

“My loved one with Alzheimer’s has stopped initiating conversation; when prompted she says little. It’s a marked decrease and very disheartening,” one caregiver wrote, adding: “My loved one has become suspicious of us and depressed believing her friends have abandoned her and the daughter living outside the home doesn’t care for her.”

“Without outside means to entertain and divert him, it is harder to keep my patience with having to explain why we cannot go places every five minutes; he is more confused and needs constant supervision,” one wrote.

“The isolation is infecting my wife who has dementia,” one man wrote. “What's the disease of lack of social stimulation?”

“My loved one is suspicious that I’m being cruel by not taking her shopping; it makes her increasingly argumentative,” a caregiver wrote. “Adult child got laid off and is now living at home. That’s just an added stress.” She added: “I’m more angry and short-tempered. Not a good trait when dealing with a person who has dementia.”

At the same time, others have seen moments to be grateful for. “There has been a huge adjustment that I (we) have had to compromise to support mental hygiene and physical health,” one caregiver wrote. “The effects have made us appreciate time and gratitude for moments that are available to care for ourselves and our loved one with Alzheimer’s. It’s been a balancing act.”

Highest Stress and Burdens on Caregivers During COVID-19 Shutdowns

The UsAgainstAlzheimer’s surveys show significant levels of stress and isolation for caregivers. In the May survey, 81 percent of caregivers reported higher stress because of the COVID-19 pandemic and shutdowns. In addition, nearly three in four (72 percent) of those 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 COVID-19, and 43 percent of caregivers are unsure what to do if their loved one with Alzheimer’s became sick.

“If I get sick, there is no one to take care of husband with dementia,” one caregiver wrote.

Nearly 9 in 10 (88 percent) of caregivers reported having one or more stress symptoms typically found in people experiencing severe stress – an 8-point jump from April. The top reported stress symptoms included: sleep problems (38 percent); difficulty concentrating (34 percent); trouble experiencing positive feelings (31 percent); loss of interest in activities (31 percent); vigilance/being ‘super alert’ (29 percent); and irritable/angry behavior (25 percent).

Importantly, in a new question in the May survey, 25 percent of dementia caregivers said physical or mental changes related to the COVID-19 pandemic and isolation are affecting their ability to care for their loved ones. That survey also found that 26 percent say they need more access to outside support groups – but are unable to get it. Another one in six (16 percent) caregivers say they need, but can’t get, home health aides because of the COVID-19 coronavirus and closures.

“Closed the day care my husband was attending; now I am with him 24/7 and it does get to be a bit much, but we are making it work,” another said.

“As her dementia becomes worse, my inability to do everything that needs to be done weighs heavily,” another caregiver wrote.

“I am much more on edge, snappy,” one wrote. “It's not her fault, I'm tired.”

“I feel I lack my prior levels of patience,” one caregiver wrote. “I’m dealing with the stress of knowledge of the world outside my home and impacts on our family, friends and community and shouldering my fears alone as my loved one is unaware of these impacts. I am still providing the care he needs, but I’ve hurt my back during this crisis and have to bathe and dress him so I’m not only in pain but I’m exhausted because the pain doesn’t allow me to sleep soundly.” She added, “His ability to communicate has declined, his dependence on me has increased.”

“I am much more irritable, less patient and becoming depressed because I am so worried about the future and how I will continue to care for my mom,” one wrote.

“I try to keep myself as busy as I can in order to not think about too much; otherwise I’ll go nuts,” a caregiver wrote. “It is better to have a positive attitude as best as you can for your own sake and the well-being of your loved one. I must admit though that it has affected my sleeping patterns.”

“I have more days when I'm feeling low; more days when I am irritable,” wrote a caregiver.

As the closures continued well into May and some states began lifting restrictions, some caregivers noted that a return to life before the coronavirus was not in sight.

“The adult day care that provided my loved one with stimulating actives and much needed socialization is now closed due to COVID-19; reopening date TBD,” one caregiver wrote.

“I miss seeing and spending time with friends and family,” one caregiver said. “I'm bored and ready for this to be over, although I'm worried that it never will be over.”

In the first UsA2 survey in March on the COVID-19 coronavirus crisis, caregivers shared advice on how to manage stresses and anxiety during this deeply uncertain time. Their advice can be found in this blog post.

Widespread Visitation Restrictions in Nursing Homes

A smaller set of 36 survey caregiver respondents who have loved ones with Alzheimer’s or another dementia in assisted living facilities are experiencing high stress levels because of visitation restrictions and challenges getting information about their loved one at a time when COVID-19 outbreaks are growing. The survey found that 31 percent said they had heard of cases of COVID-19 in the assisted living facility at the time of this survey (May 8-13), nearly double the rate in the April survey.

Media outlets analyzing state data report that almost a third of coronavirus deaths come from nursing homes. And, with nearly half of all long-term care facility residents living with Alzheimer's or another dementia, individuals with the disease have become one of the most disproportionately vulnerable groups from COVID-19 in the country. The May survey results showed that 100 percent of the 36 respondents with loved ones in facilities supported requiring COVID-19 testing of all nursing home residents and staff.

And many of these nursing home patients with dementia are no longer able to have families or caregivers visit them and assess their health.

The May survey found that 92 percent were unable to see their loved one because of virus-related visitation restrictions, and nearly three quarters (72 percent) said their stress levels were higher. Top stressors of caregivers with loved ones in assisted living facilities included the inability to know/accurately assess health status (64 percent); concern about facility’s ability to manage the situation (44 percent) and concern about facility’s ability to adequately care for their loved one (42 percent). More than a third (36 percent) say they are less confident about the level of care for their loved one.

“I'm not allowed to go visit my mom at all in the assisted living facility,” one caregiver wrote. “I have not seen her since the beginning of March. She wonders why I have not been able to visit. Dementia is nobody's friend.”

“Mother in assisted living home with one COVID-19 case and little contact with her, and the fact she’s shut in her room with nowhere to walk/get exercise and very little human contact is very scary!” one caregiver said. “No end in sight for Alzheimer’s people such as her.”

“My mother is in Memory Care so she is well cared for, but my family has been unable to see her in quarantine and we feel her cognitive abilities have declined,” a family member said.

“The heartache of not being able to visit my husband; will probably be at least until August,” a spouse wrote. “I stay away from others to make sure I don't get sick so I will be able to visit as soon as I can.”

“I cannot physically visit my husband who is in a memory care facility. I can only have ‘window visits’ with him. It allows me to see him, but no physical contact...I can't hold his hand, give him a hug, etc.,” a woman caregiver wrote. “We've been married 58 years, this is extremely hard and stressful.”

“My mother is in a memory care assisted living. It pains me not to be able to go visit her. A nurse at the community has shared that she is declining cognitively. Being so isolated in her room instead of the usual stimulation and community she shares with the other residents has truly affected her,” one family caregiver wrote. “I feel very much stress worrying that the COVID-19 safety measures have caused her to decline in the Alzheimer's progression and that brings a measure of guilt to me, wondering if I should have taken her out of that memory care and into my home.”

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Survey Methodology: The IRB survey, taken May 8-13, 2020 by the UsAgainstAlzheimer’s A-LIST®, had 650 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; however 640 of them described their status.  Current caregivers were the largest group with 176 responses, with a subset of 36 respondents who said they had a loved one in an assisted living facility.  In some questions, respondents could provide more than one answer.

Roger Lowe is chief communications officer at UsAgainstAlzheimer’s.