By Terry Frangiosa and Meryl Comer

The personal and collective fear of “What If I Get Sick with COVID-19?” continues to dominate headlines and affect the mindset of people across the nation and much of the world. To bring it closer to home and into our own (immediate and extended) families, we all feel the angst that we could potentially infect a loved one. Compounding that angst is the stress, felt by care partners of people with Alzheimer’s disease or another dementia, who balance that apprehension 24/7, even as their loved one’s dementia continues to progress.

Five UsAgainstAlzheimer’s A-LIST monthly surveys since March have captured a “slice of life” portrait of the Alzheimer’s community throughout the coronavirus crisis. The data documented and reported high areas of concern from Alzheimer’s and dementia caregivers, who are unsure what would happen to their loved one if they (the caregiver) became sick with coronavirus.

The “unsure” level was above 70 percent in the first four surveys, and 58 percent in the July survey. In addition, more than a third (35 percent) were unsure what they would do if their loved one with Alzheimer’s became sick.

“I honestly don’t know what would happen if I become sick; we would just have to struggle through as best we can,” one caregiver wrote.

“I once was suddenly hospitalized while my husband and sister were both traveling. Thankfully, I was able to call my neighbor to care for my mother until my family could return back to the area,” a second caregiver wrote.

“I cannot even allow myself to consider that at this moment,” a third caregiver wrote.

These ‘real world’ comments offer blunt insights into the Alzheimer’s journey itself. Caregivers steel themselves and manage stoically, as best they can. Many cannot effectively plan ahead because the additional stress is overwhelming.

To learn more about what was behind these high numbers (of caregivers who were unsure what would happen if they became sick), the July A-LIST COVID-19 survey contained a series of questions about preparation steps that caregivers had taken.

Nearly three in 10 (28 percent) said they had nothing in place for their loved one’s care in the event that the caregiver became sick with the virus. Half (51 percent) had discussed plans with family or friends, and 21 percent had a written plan (informal or legal) in place.

“Instructions have been given to family members for the care of my spouse,” one caregiver wrote. “We both have long-term care policies and can afford to pay for assistance and have family who can help.”

Some caregivers admit that they understood the need to be better prepared in the event that COVID-19 affected their family, but didn’t know where to start, how to plan, or how to find the time.

“Would need help making a plan,” one wrote, adding “overwhelmed and just not knowing how to begin.”

Tips and Resources to Make a Plan

There’s little wonder that some people feel too inundated to even think about finding time in the midst of the pandemic to develop a contingency care plan for a loved one.

But the alternative is worse: imagine an unexpected, serious illness or hospitalization, with no back-up plan for the care of your loved one with Alzheimer’s or another dementia. The best time to develop a plan is now.

It is incredibly important to plan ahead and prepare BEFORE getting sick to avoid more significant stress later on. Here are three areas of planning that can create more certainty and reduce stress levels for loved ones.

• Financial planning—It’s especially valuable to prepare financial plans early, as there is a five-year retrospective review of finances to assess one’s eligibility to invoke Medicaid.
• Legal planning—Family disputes and misunderstandings can figure prominently into later stages of planning, to the dismay of many family members. Speak with an attorney as early as possible in the process to develop and communicate plans to other family members, in order to help identify and resolve concerns.
• Emergency planning—While it’s impossible to conceive of every possible emergency situation, it is vital to consider a variety of ‘what if’ situations.

There’s also a real need to prepare for the possibility that the person in your care becomes sick. What should other caregivers know? Are there specific times of the day or evening that are more challenging? Have you discovered ways to manage certain behaviors that an alternative caregiver would need to know? These kinds of details should be explicitly written in a note, for health care providers or alternate caregivers, in the event that your loved one becomes ill. A “Healthcare Person-Centered Profile” (link below) is an excellent tool to help prepare such directives.

Generally, the theme of ‘early preparation’ applies to us all, whether or not we are currently, or will someday be a caregiver. None of us knows when or if we will become ill, and it is vitally important to make your own plans and/or wishes known.

Resources to help with planning:

• Medicare / Medicaid: https://www.cms.gov/Research-Statistics-Data-and-Systems/Research/MCBS

• Health Care Person-Centered Profile: https://ncapps.acl.gov/covid-19-resources.html

• Nursing Home care resources: https://www.medicare.gov/nursinghomecompare/search.html?

• COVID-19, Dementia and caregiving resources: https://www.resourcesforintegratedcare.com/Older_Adults/2020_Webinar/COVID-19_Supporting_Individuals_with_Dementia_and_Caregivers

• Webinar on support of caregivers of older persons in times of stress: https://acl.gov/news-and-events/announcements/ric-panel-discussion-supporting-family-caregivers-older-adults

• Advanced care planning support: https://www.cms.gov/outreach-and-education/medicare-learning-network-mln/mlnproducts/downloads/advancecareplanning.pdf

The coronavirus pandemic has served to remind us of just how fragile we all may be when faced with the unknown. Those of us on the Alzheimer’s journey, either as a patient or caregiver, came to terms with that fact long ago as both a way of life, and a measure of our own resilience.

Terry Frangiosa is the lead A-LIST Survey Investigator and a former caregiver. Meryl Comer, a co-founder of UsAgainstAlzheimer’s, is a long-time caregiver and advocate.