Vulnerable Caregivers Keep On, Part 1

This article is the first in a 3-part series on caregiving.

Pandemic or no pandemic, a caregiver’s work never ends. November is National Family Caregivers Month. This is a time to put the spotlight on the millions of caregivers across the country, and to support them in their caregiving efforts.

No matter the reason why, caregivers dedicate hours of unpaid work to help their loved ones through hospitalization and rehabilitation, or at home helping their loved one manage as well as they can. On average, this caregiving phase lasts about 4.5 years, although over the past few years, this period is increasing to 5 years or longer. A lot depends on the reason for the care. Someone with dementia will need longer term care, but someone recovering from an acute illness, like sepsis, may become independent again.

But who takes care of the caregiver? Who notices if the caregiver needs help or a break? Who can they turn to if they are burning out?

Vulnerable Caregivers

Who are the vulnerable caregivers? They are the caregivers who have a higher chance of developing their own problems as they care for someone else.

A study, done several years ago, found that people at risk often were:

• Over age 65
• In fair-to-poor health
• Sole caregivers
• Providing high-intensity care

Another risk factor is education – it seems that those who did not complete high school were also vulnerable.

But sometimes vulnerability is the result of the stage of life, even without some of the risk factors listed. “I find that probably the most vulnerable caregivers are the ones who find themselves in the sandwich generation,” Chris Chimenti, MSPT, told Sepsis Alliance. People in this situation juggle their own family’s needs with a parent’s or older relative’s care, “They are most at risk of caregiver burnout.” Chimenti is Senior Director of Clinical Innovation at HCR Home Care in Rochester, NY.

A 2020 Report on Caregiving in the U.S.

A report from the National Alliance for Caregiving and the AARP stated that not only are there more caregivers now than there were only five years ago, but 24% of caregivers are looking after two or more people. In addition, the loved ones receiving care need a higher level of care than just five years ago:

“Compared to 2015, caregivers are more likely to report their adult care recipient needs care because of long-term physical conditions (63% up from 59% in 2015), emotional or mental health issues (27%, up from 21%), and memory problems (32%, up from 26%) … [This] suggests that not only are more American adults taking on the role of unpaid caregiver, but they are doing so for adult recipients who may have increasingly complex medical or support needs.”

“Caregiver burnout is such a difficult element because people find themselves in these unforeseen situations. Whether it’s physical, mental, emotional, they find themselves in a situation where they’re pulling their hair out.” This burnout and stress may lead the caregivers to behave in ways they wouldn’t normally. “They kind of step out of character because of the circumstances,” Chimenti added.

Aging Caregivers

Age is another factor that adds to vulnerability. Many caregivers are seniors themselves. They may have their own medical conditions or limitations, making it harder to provide care. A study published earlier this year found a 30% increase in depression symptoms among the partners of people who have dementia.

According to the researchers, there was a 27% increase in depression symptoms among caregivers whose partners were diagnosed with dementia in the previous two years. This rose to 33% if their partners were diagnosed more than two years earlier. The researchers also pointed out that caregivers who are depressed are at risk for falls, 30% more likely, which causes another whole set of problems.

Add the Pandemic to the Mix

As if it wasn’t tough enough for caregivers, throw the pandemic into the picture.  Caregivers don’t have to contract COVID-19 to feel its effects. They might not be able to enjoy some free time outside the house, even if it’s just to go shopping. Outside activities for their loved ones, like going to a day center or respite care, are also canceled. Even walks outside may be impacted. Depending on the disability, loved ones may not understand why they can’t go inside a store or place where they usually visit. As dire as the statistics may seem, there is room for hope because there is room for improvement. In Part 2, we discuss the effects caregiving can have on the caregiver. Part 3 will be how to get help or how to help someone who is a caregiver. Part 3 discusses how to help the caregiver.

To learn more about sepsis and resources for caregivers and others, visit the Sepsis Alliance Patients & Families section.