Who Becomes a Caregiver

Who Becomes A Caregiver?

Who Becomes a Caregiver?

Statistics related to the number and types of caregivers in the United States in 2020


53 Million Caregivers In US 

     A recent survey by the National Alliance for Caregiving and AARP found that in 2020, 53.0 million adults in the United States provided care to an adult or child with special needs during the previous twelve months. That number increased by almost seventeen percent in the past five years. With that increase, one in five American adults now serves at least part-time as caregivers.

     What did the survey find out about who becomes a caregiver in the United States? Do middle-school kids pick caregiving as a career path? Are individuals promoted or advanced through experience in the roles? The report tells us a lot about who caregivers are and what they do.  It also confirms that most caregivers are family members who assume the duties associated with their role in the family. Each of the following panels tells us a little more about who becomes a caregiver and why.  As one caregiver “living the life” to another, it’s not surprising information. 

Caregiver starting IV on Mother at home

Who Are Caregivers?

  • Man = 39% Women = 61%
  • 61% White, 17% Hispanic, 14% Black, 5% Asian, 3% all other
  • 74% of caregiver age 75 or older take care of someone that age or older
  • 81% of caregivers age 18-49 take care of someone age 50 or older
  • 14% are under the age of 18 (there may be 3.4 million children caregivers in the US)

What Does This Tell Us?

     Looking at these statistics, it seems that the majority of caregivers are white females. This information also implies that spouses or older relatives tend to care for one another, and the grown children take care of older relatives or friends. It is also interesting to note how many children are caregivers for family members.  Based on this data, a child could become a caregiver and continue in the role for most of their life if they had a parent unable to care for themselves.



What They Do

  • 99% assist the person receiving care with instrumental activities of daily living
  • 60% help with activities of daily living
  • 26% have difficulty coordinating treatment and appointments
  • 58% help with medical/nursing tasks
  • 40% provide complex, high-intensity nursing care tasks

What Does This Say About Caregiving?

    The survey shows that care recipients need care that is more complex.  Often the type of care needed is similar to that received in a hospital setting but delegated to the caregiver. The caregiver is responsible not only for the complex nursing or medial task but also for the activities of daily living and instrumental activities. Therefore, the unpaid caregiver has a 24-hour shift where he or she is (1) helping a person do everything they need to do to care for their personal needs and entertainment for the day (2) conduct and coordinate all of this person’s personal affairs, (3) do the upkeep for their home and personal belongings, (4) keep up with their multiple medical appointments and treatments in addition to taking care of themselves, their own families, their own homes, maybe a job, and maybe their health concerns. 


   The unfortunate facts in many rural areas are that resources to support these individuals do not exist. In rural areas, the distance to travel prohibits access.  In municipalities, the systems are over-burdened. Too much need and not enough resources. 


Impact on Employment

  • 61% of caregivers work outside the home
  • 61% say they have experienced a work-related impact). Fifty-three percent report being late, leaving early or needing accommodations with time off to deal with family matters
  • 21% provide unpaid care (up from 18% in 2015)
  • 10% need to stop working outside the home entirely or retire early

What We Know

     Most caregivers must work to pay the bills to care for their families. While the Family Medical Leave Act (FMLA) exists to allow them time off to take family members to appointments, there is no pay.  Therefore, the loss in pay prevents them from having the option to follow through on medical appointments. While it is also illegal to threaten someone who uses their Family Medical Leave Act rights to take time off to care for their family, the supervisor not so subtly communicates that taking time off is not appreciated.  Once someone starts to use the benefit regularly, close attention to other aspects of their work begins, and problems develop at work.


     There are no discrimination protections for caregivers. Discrimination rights apply to the person with the disability. The only time discrimination rights apply to the caregiver is when they treat you as if you have a disability because of your association with someone who has one.  



Impact on Health

  • 23% report their health has declined in the past five years due to caregiving
  • 21% states their health has been negatively affected
  • 54% expect to be caring for someone in the next five years
  • 44% have made plans regarding health care decisions and living arrangements if something should happen to the person under their care. In contrast, likewise, 45% of the caregivers have done the same for themselves.

What Does This Tell Us About A Caregiver’s Health?

     The above tells me that caregivers don’t stop and take the time necessary to care for themselves. Their focus is on the care receiving care, and they selflessly put themselves out of the picture.  Now, I’m not saying they don’t complain about it, but they put the other person’s needs before their own. If the one needing their care gets sick, and the caregiver has an appointment, they cancel their doctor’s appointment and may never get around to rescheduling. 


     Due to caregiving burdens, many caregivers are isolated and don’t have an opportunity to nurture friendships or even family connections. Twenty-one percent report feeling alone. In 2015, 48% of caregivers reported their health as very good; only 41% do so now.  Instead, those reporting their health as fair to poor went up from seventeen percent to twenty-one percent.  Twenty-three percent say it’s difficult to care for their health, and as many (23%) report caregiving has made their health worse. Many reported that caregiving’s stress made their health conditions worse and increased the speed at which their health declined with age.


   As the health of the caregiver starts to decline, they, too, will need care. Who will take care of the caregiver or the former care recipient then?  The requirement for resources doubles with both needing care. Who will step in for the caregiver?



Impact on Finances

  • 45% states caregiving has a financial impact on their income.
  • 18% report significant financial strain due to caregiving
  • 45% experienced at least one financial impact.
  • 28% have stopped saving
  • 23% are accumulating debt.

What we Know

     Too often, caregivers have to either stop work or cut their hours back to provide the care needed for a care recipient. The amount of time required to provide care for your family member, home, and family leaves very little time for sleep. The lack of sleep makes driving to work dangerous and makes your work less efficient and reliable.   The result is that often caregivers get into trouble at work and either involuntarily lose their jobs or decide on their own that it’s time to leave before they get fired. 


     With either a job loss or a cut in hours, the financial impact is usually significant. Add to that the cost of a relief caregiver when you are away, and life gets expensive. 


     Caregiving isn’t cheap:

  • All the medication copays aren’t covered,
  • the supplies that you need to use that insurance says are not essential,
  • the equipment you need to help you do things you can’t do alone, and
  • what seems like the hundreds of other expenses that eat away your savings.

     Added to that challenge further is that caregivers take on the role without prior training and with limited resources or community support. Furthermore, in many cases, the caregiver cannot access services available in their area due to the failure to meet eligibility criteria or limitations on local resources. In many rural areas, services are unavailable due to small populations not meeting the minimum requirements necessary for the State to provide dedicated resources. While families might otherwise be eligible, the distance for access to the resource prohibits the ability to do so either due to transportation difficulties or cost/time constraints. 



Why So Many Caregivers?

Why So Many Caregivers?

     Fifty-three million adults are a lot of caregivers! Why do we have so many caregivers? Do we have a national crisis featuring a lack of resources available to care for people in hospitals? Are home health services that much better than hospital services?  Why the push for care at home?

Senior African American man and granddaughter

    The baby boomer generation is getting older and developing medical conditions requiring access to services. They do not always need to be in the hospital. Often all they need is assistance from family members. However, many have no immediate family available to provide care, increasing the need for in-home companion assistance and long-distance caregiving skills. A baby boomer, who becomes a caregiver to a spouse or friend, is also likely to one day need care themselves.


     Many healthcare workers, including long-term healthcare workers, belong to the baby boomer generation and are retiring. The generations following them entered fields such as information technology rather than service industries leading to a deficit in the healthcare-related workforce pipeline. Therefore, as baby boomers retire, there are fewer trained replacements to assume their roles.  Knowing this staffing crisis was on the horizon, healthcare’s solution was to begin developing programs promoting early discharges and family care at home. The idea was that families would provide patients with the care they needed at home in an environment where the infection risk was less. The bonus was that it also freed up a room for the next patient.


     States have pushed the responsibility to provide services to low-income and special-needs families to the local governments. Funding did not accompany the additional responsibility resulting in a reduction in service availability. The result is a loss in available resources to many families unable to meet their share of cost or drive the distance required for access. Many companies continue to struggle with finding solutions to this issue.  Consumer-Directed Services is one way Medicaid helps those eligible access care options when services are not readily available. 


Familys can use Consumer Directed Services for care support.

   One explanation for the increase in the percentages reflected in the survey is that caregivers want others to know about their existence. They realized that unless others are aware of the need for resources, the change will not happen.  Therefore, they are participating more in surveys. 

Who Receives Care?

  • 89% provide care for a relative; the other 10% provide care for a friend 
  • 40% live with the person receiving care
  • 24% care for more than one person (up from 18% in 2015)
  • 26% care for someone with dementia or Alzheimer’s (up from 22% in 2015)
  • The average length of time for caregiving in 4-5 years though many (29%) do five years or longer.

What We Know About Who Receives Care

     Most caregivers take care of a relative (89%).  The survey broke that number down further to explain that of the 89%,  parents or parents-in-laws made up 50% of the mix, spouses or partners were another 12%, grandparents/in-laws 8%, an adult child 6%, and non-relatives accounted for the remaining 10%. As you can see, most were older adults.  Older care recipients typically received care from their spouses or siblings; therefore, their caregivers were in the same age group.  The younger caregivers took care of older relatives-parents, grandparents, aunts, and uncles. 

     The trend seems to be that once caregiving begins, the care recipient and caregiver move in together if that was not the case before because 40% live together. Forty percent presents a six percent increase since 2015 when it was 34%. 


Care Recipients Are Sicker

     We also know that those receiving care now compared to those needing caregivers in 2015 have greater health challenges.  63% (up from 59%) have long-term physical conditions, 27% (up from 21%) have emotional or mental health issues, and 32% (up from 26%) have memory problems, including Alzheimer’s or dementia, which is 26% (up from 22%). 



Where do Caregivers Get Their Information?

Where do Caregivers Get Their Information?
  • 55% rely on healthcare professionals as their source for information about providing care but
  • only 29% report having a conversation with them about care needs and
  • only 13% have talked to them about what to do about meeting their own needs as caregivers.
  • 32% go online to search for hands-on help such as aides and facilities.
doctor's officeWhat Does This Mean?

     What I get from the information above confirms what I’ve been saying throughout this website. Caregivers receive minimal information to help them learn what they need that they don’t get for themselves. The survey says 55% of caregivers count on getting their information from a healthcare professional. However, only 29% ever talk about what they need with anyone. If that’s the case, then most caregivers are not receiving what they need. Rather than speak to someone about it, they’re going online to try to find the information themselves. 


Why is that? 

     If their lives are like mine,  it’s because they don’t have the time or the opportunity to leave home to go somewhere to meet with someone to get information.  If they are going to have a break to get information, it will happen at 10:00 at night; not when the doctor’s office is open.

     The other issue is that doctors and nurses are too busy to sit down and spend a lot of time with us going over many details about caregiving. They can hand us some books to read that they have never read, and they can give us a “high-altitude” briefing on a topic, but a detailed account is not likely to happen.  They schedule patients fifteen minutes apart in most physician offices, which does not allow for detailed impromptu training.

group of happy people with disabilities
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