THE STATE OF UNPAID FAMILY CAREGIVING IN THE U.S.

June 15, 2021

Caregiving is an important topic that directly impacts the lives of millions of Americans. Approximately every five years, the National Alliance for Caregiving (NAC) and AARP conduct a survey to look at family caregiving in our nation. They have released their most recent research report, Caregiving in the U.S. 2020, and some of their findings are quite surprising.

An overall increase in unpaid family caregiving

From 2015 to 2020, the number of unpaid family caregivers in the United States increased by nearly 10 million people, jumping from 43.5 million to 53 million. That number represents more than one in five Americans (21 percent of the adult population) who are acting as a caregiver to a loved one. This includes those who have provided care to an adult or a child with special needs at some point in the past 12 months.

If we break out those only providing care to adults, that number has risen from 39.8 million American caregivers (16.6 percent of the adult population) in 2015 to 47.9 million (19.2 percent) in 2020. That’s an increase of over 8 million American adults who are providing care to a family member or friend age 18 or older. This jump is primarily the result of a marked rise in the number of people who are caring for a loved one who is age 50 or older, which grew from 34.2 million to 41.8 million in five years.

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More are caring for multiple people

According to the 2020 survey, more people who are providing unpaid care to an adult are now providing care to multiple people. Nearly a quarter (24 percent) of caregivers are caring for two or more people — a figure that has increased from 18 percent in 2015.

When considering this statistic in combination with the overall increased prevalence of family caregiving, we can see a picture emerge of Americans who are increasingly offering unpaid care to love ones in need of assistance.

The 2020 NAC/AARP report attributes this phenomenon to a “confluence of trends” including the growing number of aging Baby Boomers who require care, worker shortages in the long-term care services field, and an increasing trend of states that facilitate home-based care. But another contributing factor of these numbers is an increase in the number of people who acknowledge and self-identify that the activities they are doing are “caregiving.”

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The care recipients

Of those providing unpaid family caregiving to other adults, nearly nine out of 10 people (89 percent) are caring for a relative — most often a parent or parent-in-law (50 percent), spouse or partner (12 percent), grandparent or grandparent-in-law (8 percent), or adult child (6 percent). Ten percent of caregivers are helping a friend or neighbor. Many people live with their care recipient (40 percent); that number has increased 6 percent since the 2015 survey.

More or less unchanged since 2015 is the fact that older caregivers are usually taking care of older care recipient. Nearly three-quarters of caregivers age 75 and older are taking care of someone who is also age 75 or older. Younger caregivers — those ages 18 to 49 — are most often taking care of someone older than themselves with 81 percent caring for someone who is 50 or older.

But the overall health of care recipients appears to have declined in the five years since the last survey.

  • Sixty-three percent of today’s caregivers report their adult care recipient requires care because of a long-term physical condition, a figure that is up from 59 percent in 2015.
  • More caregivers today (27 percent) also say their loved one requires care because of emotional or mental health issues (up from 21 percent in 2015).
  • There was also a marked increase in those who require caregiving because of memory problems, a number that rose from 26 percent in 2015 to 32 percent in 2020. This includes care recipients with Alzheimer’s disease or dementia (26 percent, up from 22 percent in 2015).

Overall, caregivers in 2020 reported that their care recipient had 1.7 health conditions on average, which is up from 1.5 in 2015. According to the report, this increase in comorbid conditions “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.”

How the caregivers are helping

Caregivers today are providing similar types and quantities of assistance to their loved one as they were in 2015.

Caregivers are still offering around 24 hours of unpaid care per week, and nearly all (99 percent) help with Instrumental Activities of Daily Living (IADLs), which can include things like cooking, cleaning, transportation, shopping, and more. Sixty percent of caregivers are helping their care recipient with Activities of Daily Living (ADLs), which includes things like bathing, dressing, eating, and using the toilet. Nearly six out of 10 caregivers (58 percent) are also assisting with medical/nursing tasks.

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The health and financial toll on the caregiver

I’ve written before about the impact that caregiving can have on the caregiver. While about half report feeling a sense of purpose or meaning in their caregiving tasks, there also are increasing numbers of caregivers who feel stressed (physically, emotionally, and/or financially) and believe their own health is suffering as a result of their role.

Fewer caregivers in 2020 report their health status as “excellent” or “very good” as compared to 2015. That number went from 48 percent in 2015 down to 41 percent this year. Additionally, more caregivers today (21 percent) report being in “fair” or “poor” health, an increase from 17 percent in 2015.

Overall, almost a quarter (23 percent) of caregivers today say they find it difficult to take care of their own health. That same number say that caregiving has made their own health worse. And one in five say they feel alone.

And there are financial ramifications for caregivers too. A few examples:

  • 18 percent report high financial strain as a result of their caregiver role.
  • 45 percent have experienced at least one financial impact as a result of their caregiving.
  • 28 percent have stopped saving.
  • 23 percent have taken on more debt.
  • 22 percent have used up personal short-term savings.
  • 12 percent have used up long-term savings.

As for the caregivers paying job, there are big impacts too. Three out of five caregivers (61 percent) are still working while also providing unpaid care to a loved one, which can create challenges like going in late, needing to leave early, or having to take time off. In fact, 10 percent of unpaid caregivers say they have had to give up work entirely or retire early in order to accommodate their caregiving responsibilities. This can of course have long-term ramifications for their income, retirement savings, and Social Security benefits.

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The future of unpaid family caregiving

The average length of time a caregiver provides unpaid care to a loved one is 4.5 years. However, the number of people providing caregiving for five years or longer is rising — increasing from 24 percent in 2015 to 29 percent in 2020.

With this average going up, as well as the increase in the overall number of unpaid caregivers, it is imperative that we as a society find innovative solutions to help those who require care as well as those who provide care for a loved one. Technology and assistive devices are helpful for some, but as any caregiver will tell you, nothing can replace human care and contact.