Who are caregivers and what do they do?

Date:

May 6, 2022
Reading Time: 5 minutes

You might be surprised to learn more than 1 in 5 Americans identify as caregivers/informal caregivers/family caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. This totals an estimated 53 million adults in the United States, up from the estimated 43.5 million caregivers in 2015. Caregiving remains an activity that occurs among all generations, racial/ethnic groups, income or educational levels, family types, gender identities, and sexual orientations. The shifts in caregiver demographics reflect general changes in the demographic composition of the U.S. population.

Most caregivers of adults are caring for relatives, with only 10 percent caring for friends or neighbors:

In addition, 40 percent of caregivers live together, older caregivers tend to take care of similar-aged recipients, with 74 percent of caregivers ages 75 and older caring for a recipient age 75 or older, while younger caregivers tend to take care of someone older than themselves (81 percent of caregivers ages 18 to 49 care for someone age 50 or older).

A greater proportion of caregivers of adults are providing care to multiple people now, with 24 percent caring for two or more recipients (up from 18 percent in 2015). This finding, in combination with the increased prevalence of caregiving, suggests a nation of Americans who continue to step up to provide unpaid care to family, friends, and neighbors who might need assistance due to health or functional needs. This increase in prevalence may be due to any of the following:

  • The increasingly aging baby boomer population requiring more care.
  • Limitations or workforce shortages in the health care or long-term services and supports (LTSS) formal care systems.
  • Increased efforts by states to facilitate home- and community-based services.
  • Increasing numbers of Americans who are self-identifying that their daily activities, in support of their family members and friends with health or functional limitations, are caregiving.
  • The confluence of all of these trends.

The impact of disease or disability can ripple beyond the caregiver and recipient. Other members of the family or community, such as children in the home, may be called upon to carry out care tasks. About half of caregivers say there are others who provide unpaid help to their care recipient. Among those who report the presence of other unpaid help, 14 percent say at least one of those unpaid caregivers is a child under age 18—so out of all caregivers of adults, 7 percent report the presence of a child caregiver. Beyond the estimated 48 million caregivers of adults in the United States, an additional 3.4 million child caregivers may be standing in their shadow.

What do Caregivers do?

Today’s family caregivers provide an average of 24 hours of care each week for loved ones, including: 

  • Instrumental Activities of Daily Living (IADLs) – 99%
    • Activities that allow an individual to live independently in a community. Although not necessary for functional living, the ability to perform IADLs can significantly improve the quality of life. Examples of IADLs include cooking, cleaning, transportation, laundry, and managing finances.
  • Activities of Daily Living (ADLs) – 60%
    • In contrast with IADLs, ADLs are necessary for basic functional living. Examples of ADLs are feeding, dressing, bathing, and walking. Deficits in performing ADLs may indicate the need for home healthcare or placement in a skilled nursing facility.
  • Medical/nursing tasks – 58%
  • High-Intensity Care situation – 40%

Caregivers report that the adults who receive care (the “care recipient”) have greater health and functional needs than was reported by caregivers in 2015. Compared to 2015, caregivers are more likely to report their adult care recipient needs care because of:

  • long-term physical conditions (63 percent, up from 59 percent in 2015)
  • emotional or mental health issues (27 percent, up from 21 percent)
  • memory problems (32 percent, up from 26 percent)
    • including Alzheimer’s or dementia (26 percent, up from 22 percent in 2015).

This increasing comorbidity of conditions that require care, with caregivers reporting their recipient has 1.7 conditions categories on average (up from 1.5 in 2015), 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. Many caregivers may be taking on this role without adequate and affordable services and supports in place; about one in four report it is difficult to get affordable services in their recipient’s area. 

The Impact of Caregiving

While many caregivers feel their role has given them a sense of purpose or meaning (51 percent), these positive emotions often coexist with feelings of stress or strain. Caregivers report physical, emotional, and financial strain, with 2 in 10 reporting they feel alone. Fewer caregivers report their health status as excellent or very good (41 percent, down from 48 percent in 2015) and a greater proportion report being in fair or poor health (21 percent, up from 17 percent in 2015). One in 4 find it difficult to take care of their own health (23 percent) and a similar proportion report caregiving has made their own health worse (23 percent).

This decline in caregiver self-reported health is concerning, as the stress associated with caregiving may exacerbate declines in health that occur with age. This means that supports for caregivers and their recipients will be even more critical if this trend in declining caregiver health continues to hold. From a policy perspective, the strain of disease or disability on a family unit can endanger larger system goals to improve health care and reduce overall costs in an increasingly strained system. Caregivers who cannot care for themselves may become unavailable to care for others; likewise, caregivers have their own financial, health, and wellness needs, which begs the question, “Who will care for the caregivers?

The economic effects of family caregiving can result in financial strain with substantial financial consequences. One in 5 caregivers report high financial strain as a result of caregiving (18 percent). Four in 10 have experienced at least one financial impact as a result of their caregiving (45 percent). Most commonly, 3 in 10 have stopped saving (28 percent) and 1 in 4 have taken on more debt (23 percent), both of which could have longer-term repercussions on caregivers’ financial security into the future, especially if the caregiving situation lasts a long time. Caregivers of adults find themselves providing care for 4.5 years, on average, and an increasing proportion have been providing care for 5 years or longer (29 percent, up from 24 percent in 2015).

Family and friends comprise the most basic unit of any society. For individuals who take on the responsibility of caring for another person through sickness or disability, it can often be challenging to see beyond the individual experience. Yet in the aggregate, family caregivers—whether they be families of kin or families of choice—are woven into the fabric of America’s health, social, economic, and long-term services and supports (LTSS) systems. As the country continues to age, the need to support caregivers as the cornerstone of society will only become more and more important.

Source: Caregiving in the US – an AARP Research Report


We hope this information is helpful to you in the important work you do as a family caregiver.
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