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Dementia During the Pandemic: Isolation from COVID-19 Increased Symptoms

By Claire SamuelsMay 4, 2022
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Since the beginning of the pandemic, 70% of dementia caregivers have observed a decline in their loved one’s memory or a change in their behaviors, according to a study by UsAgainstAlzheimers (UsA2). While coronavirus restrictions like social distancing, mask wearing, and shuttering of senior centers protected countless older adults, seniors with dementia and their caregivers spent much of 2020 and 2021 reeling from the negative side effects of lack of support and dementia coupled with COVID-19 isolation.

Luckily, the advent of safe, effective coronavirus vaccines has led to increased social opportunities, more available health care, and a more balanced lifestyle for family caregivers now that outside help is readily available. The effects of isolation are beginning to wane, and dementia death statistics are stabilizing from an all-time high during the early pandemic.

While the nature of the pandemic remains uncertain, it’s clear that we can learn from the worst of it as we move forward: COVID-19 has reinforced the importance of socialization and stimulation for dementia patients, as well as self-care for their caregivers.

Learn what’s causing this rapid decline, why more people are dying of dementia, and how supporting a relative with memory loss can affect family caregivers. Plus, learn coping tips and discover resources to help you and your loved one through the pandemic.


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Why did dementia during the pandemic get worse?

Numerous social, emotional, and physical changes have contributed to increased cognitive impairment in seniors with dementia during the pandemic. Here are eight top reasons why dementia symptoms worsened during the pandemic.

  1. Fewer community resources. Before the pandemic, dementia patients and their caregivers often relied on the support of a community. From arts and day programs to paid care aides and visiting friends, seniors with dementia and their caregivers relied on outside resources for interaction, stimulation, and much-needed respite. These resources reduced the dangers of isolation.
  2. Increased stress. Stress speeds up the progression of neurodegenerative diseases like dementia, according to research published in the journal Frontiers in Psychology. Fear of mortality and personal health concerns — both prominent during the pandemic — are two major stressors the study cited.
  3. Lack of stimulation. Regular physical and mental stimulation — from activities and exercises to puzzles and craft projects — slows cognitive decline and memory loss. Daily stimulation also reduces dementia behaviors like wandering, aggression, and restlessness, according to the National Institute on Aging. For seniors with dementia, pandemic restrictions may have limited stimulation.

    In fact, up to 60% of seniors with dementia experienced further decline due to lack of stimulation during the pandemic, according to an article review published in The Lancet.

    Without regular activities, outings, and social connections throughout the pandemic, dementia patients were more likely to spend time passively watching TV or napping than pursuing interactive, brain-stimulating activities.

  4. Reliance on medication. Between working from home and virtual schooling, some family caregivers were less able to constantly interact with elderly loved ones with dementia. The same was true in communities: The number of medications prescribed to treat pandemic dementia behaviors in senior living increased significantly during COVID-19, according to a study of 630 facilities published in the Journal of the American Medical Association.
  5. Increased isolation. With stay-at-home orders and social distancing measures in place throughout 2020 and 2021, the relationship between dementia and COVID-19 isolation increased drastically. Isolation led to loneliness, a key risk factor for cognitive decline, according to a study conducted by the Rush Institute for Healthy Aging. In the study, the risk of Alzheimer’s nearly doubled in lonely adults, and mental decline occurred more quickly in lonely seniors with dementia.

    Isolation also exacerbates chronic conditions, increases anxiety and senior depression, and may lead to early mortality. Sixty-two percent of adult children caring for their parents or elderly relatives say their loved one has suffered physically or mentally from the health risks of isolation during the pandemic, according to a December 2020 survey from A Place for Mom.

  6. Impaired communication. Seniors with middle-to-late stage dementia may have trouble with verbal communication, and mask-wearing can complicate nonverbal interactions and recognition of emotions, according to research published in the journal Frontiers in Psychology. Though mask-wearing is less common post-vaccine, this impaired recognition may last in seniors with pandemic dementia. That’s because continual stimulation is necessary to prevent cognitive decline — if a person with dementia has stopped being able to recognize and interpret facial expressions, that ability may be difficult to relearn.
  7. Higher risk of injury. Without exercise classes at local senior centers or neighborhood walking groups, many older adults have lapsed into inactivity. Others stopped attending physical therapy sessions due to exposure concerns. Underused muscles and limited endurance can lead to falls and other injuries.
  8. Disrupted access to care. Seniors may have avoided nonessential medical appointments and postponed minor surgeries to limit potential coronavirus exposure throughout 2020 and 2021. For seniors with undiagnosed dementia, the pandemic may have delayed medical attention, eliminating valuable opportunities for early treatment. Even now, backlogs at medical practices can make setting appointments difficult.

Pandemic dementia deaths have surged

The coronavirus pandemic and its accompanying hardships caused deaths in seniors with dementia to skyrocket. As the pandemic wanes, death trends are beginning to reverse.

Dementia as a cause of death

Between February 2020 and the end of 2021, there have been over 75,270 “excess” deaths attributed to Alzheimer’s disease and other types of dementia, according to the Centers for Disease Control and Prevention. This statistic exclusively reflects deaths caused by Alzheimer’s and other dementias — not those attributed to COVID-19 or other underlying conditions. Many side effects of pandemic restrictions, like loneliness and changes in care plans, have contributed to this spike in pandemic dementia deaths.

In a ranking of the top 13 non-injury-related causes of death in the U.S., deaths from Alzheimer’s disease were the most elevated of any mortality group since February 2020.

The pandemic and dementia contributed to other deaths

The number of seniors with dementia who have died during the coronavirus pandemic is greater than the number of seniors who have died of dementia during this period.

Some deaths are directly attributed to COVID-19 infections, while others are from comorbidities, like heart disease, diabetes, or obesity. More can be linked to disrupted care access: With hospitals across the country at capacity, ER visits for minor concerns were often discouraged. This may have led to pneumonia that wasn’t caught in time, a wound that became infected, or a sprained ankle that led to a life-threatening fall.

Now that the pandemic is waning, mortality rates are beginning to stabilize. It’s vital for caregivers to ensure their senior loved ones receive preventive health care to treat potential underlying conditions.

Caring for someone with dementia during the pandemic: Protect yourself while supporting your loved one

Dementia caregivers have struggled throughout the pandemic, too. Seventy-seven percent of family caregivers said their stress level was elevated when coronavirus restrictions were put in place, according to the UsA2 survey. This sharp increase was often attributed to limited resources, fear, and uncertainty.

In 2022, that number has dropped drastically to only 22%, but caregiver stress is still higher than it was pre-pandemic, according to the survey.

Health risks of dementia caregiving during COVID-19 persist

Even in the best of times, dementia caregiving can lead to significant health risks. During the coronavirus pandemic, it’s been more important than ever to focus on your physical and mental well-being.

With stay-at-home orders and mask mandates lifted, it’s still important to prioritize health in the “new normal.” But for caregivers, the enormous decrease in cases and hospitalizations is a light at the end of the tunnel.

  • Caregivers have felt the effects of isolation, too. As of 2021, three-quarters of family caregivers felt more isolated or lonely than they did before the pandemic, according to UsA2. Now, even though caregivers are able to spend more time with friends and family, they may still feel the residual effects of isolation.
  • Elevated stress can cause sleep problems, constant vigilance, anxiety, or irritable/angry behavior. Over time, it can lead to depression, high blood pressure, and other chronic conditions.
  • Negative emotions surface. Eighty-one percent of respondents to the most recent UsA2 study felt negative toward their caregiving role during the pandemic. Of these, many claimed it was difficult for either them or a family member to be close to a loved one with dementia 24-hours a day.
  • Levels of support have fluctuated. Reduced family support, combined with the closure of senior centers and adult daycares, left many caregivers feeling burdened during the height of COVID-19. With reopenings and additional resources, caregivers are beginning to rebuild a support network.
  • Caregivers have experienced physical decline. Twenty-nine percent of caregivers felt their health was “poor” as a result of pandemic stress and reduced access to health care, according to a study published in the International Journal of Environmental Research and Public Health in January 2022.

5 coping tips for dementia caregivers during COVID-19

Caring for a loved one with dementia can be incredibly challenging. If you’re experiencing difficulty coping, consider these five expert tips from LeighAnne French, a professional home care aide based in Kansas City, Missouri.

  1. Find virtual or in-person support. “When I come in to help a family care for a loved one and I can tell the caregiver is burnt out, the first thing I do is suggest [that they] get support,” French says. She recommends searching online for dementia support groups, or using the Alzheimer’s Association’s database to find meetings near you.
  2. Perform self check-ins. Ask yourself how you’re doing as you wake up each morning. If you’re up and going, that’s great. If you’re in a bad place, think of the tools you have to help yourself. Is there someone you can reach out to? Do you meditate, exercise, or watch a favorite TV show to reduce your anxiety?
  3. Plan your day — but know it may change. “Dementia really isn’t predictable, but it can still help to have a structure and schedule so you don’t get overwhelmed,” French says. Be sure to build in time for yourself, whether it’s a phone call with a friend or even just a walk around the block.
  4. Learn how to communicate with someone with dementia. Knowing the right techniques — like patience, limited distraction, and nonverbal cues — can help. “It seems really obvious, but if you can have a good communication system, your loved one is more likely to respond and understand,” French says.
  5. Determine your comfort zone. Dementia is unpredictable, as is the coronavirus pandemic. It’s important to know what you’re comfortable with and plan accordingly. “Mask mandates are lifted now, but I still wear my mask in clients’ homes. Family caregivers can set these boundaries. Even with the pandemic going away, it can be dangerous for older people, especially with dementia,” French says.

Memory care for dementia during the pandemic

Household dynamics have changed dramatically since the onset of the pandemic. While most schools are back to in-person learning, many still have hybrid schedules, and some activities or sports may be canceled. Sandwich generation caregivers are still struggling to balance their children’s schedules with caring for their aging parents with dementia.

Caregivers of adults were nearly twice as likely to lose their jobs during the pandemic than non-caregivers, according to a community impact survey conducted by the Massachusetts Department of Public Health. This is primarily due to missed work from full-time caregiving.

The right memory care community can help keep your loved one safe while offering stability for you and your family.

How memory care communities can help with pandemic dementia care

Memory care alleviates stress for family caregivers: Overall, family members have been 20% less stressed about the health and safety of loved ones in senior living, according to Us2A. Older adults with dementia in senior living have benefited from the continued stimulation of socially distanced activities, nutrition-focused dining programs, and access to on-site health care.

As of January 2022, almost all communities are allowing new residents to move in during COVID-19. Heightened safety measures and precautions are in place, but, over time, communities have learned to adapt their services to account for both coronavirus prevention and the need for seniors to be social and stimulated. Stay up to date on how A Place for Mom’s network of over 17,000 communities are responding to ever-changing COVID safety guidelines.

If you think memory care may be right for your loved one, reach out to one of our free, local Senior Living Advisors. They can help you navigate options and have the knowledge your family needs about communities’ pandemic responses.

Other resources help family caregivers with loved ones with dementia during the pandemic

If you and your loved one aren’t ready for memory care, explore these online resources for help and support:

Sources

Biggar, V. (2020, December 2). COVID-19 and dementia: What people have learned about themselves. UsAgainstAlzheimers.

Campitelli, M.A., Bronskill, S.E., & Maclagan, L. C. Comparison of medication prescribing before and after the COVID-19 pandemic among nursing home residents in Ontario, CanadaJournal of the American Medical Association Network Open4(8).

CDC. Excess deaths associated with COVID-19

Del Río-Lozano, M., García-Calvente, M., Elizalde-Sagardia, B., & Maroto-Navarro, G. (2022, January 31). Caregiving and caregiver health 1 year into the COVID-19 pandemic: A gender analysisInternational Journal of Environmental Research and Public Health, 19(3).

Dementia Friendly America. Resources.

Justice, N. (2018, February 8). The relationship between stress and Alzheimer’s diseaseNeurobiology of Stress, 8, 127-133.

French, L. (2022, April 19). Personal communication. [Personal Interview].

Massachusetts Department of Public Health. (2022, January 12). COVID-19 community impact survey.

Rush University Medical Center. Loneliness associated with increased risk of Alzheimer’s disease. ScienceDaily.

Schroeter M. L., Kynast, J., Villringer, A., & Baron-Cohen, S. (2021, August 13). Face masks protect from infection but may impair social cognition in older adults and people with dementiaFrontiers in Psychology, 12.

UsAgainstAlzheimers. Survey #7 on COVID-19 and Alzheimer’s community summary of findings October 2020.

Woolf, S. H., Chapman, D. A., Sabo, R. T., & Zimmerman, E. B. (2021, April 2). Excess deaths from COVID-19 and other causes in the US, March 1, 2020, to January 2, 2021Journal of the American Medical Association, 325(17), 1786–1789.

The information contained in this article is for informational purposes only and is not intended to constitute medical, legal, or financial advice or to create a professional relationship between A Place for Mom and the reader. Always seek the advice of your health care provider, attorney or financial advisor with respect to any particular matter, and do not act or refrain from acting on the basis of anything you have read on this site. Links to third-party websites are only for the convenience of the reader; A Place for Mom does not endorse the contents of the third-party sites.

Author
Claire Samuels

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