Who Are Caregivers?


 According to the National Data on Caregivers, Who are Caregivers?

According to the “National Data on Caregivers,” family caregivers represent every type of person imaginable – young, old, every ethnic group, trained and untrained.  At some point, most people experience the need to care for someone else either temporarily or longer.   

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

Looking at these statistics, it seems that most caregivers fall into the category of white females. However, the information also implies that spouses or older relatives tend to care for one another and that grown children probably care for older relatives or friends.

 It is also interesting to note, however, how many children are caregivers for family members.  Based on the survey data, a child could become a caregiver early in life and continue in the role as an adult, spending their lifetime caring for a parent or sibling.

Where do Caregivers get Help and Information?
  • 55% rely on healthcare professionals as their source for information about providing care according to the “National Data on Caregiver,” however,
  • only 29% report having a conversation with their healthcare provider 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.
So Where Do They Really Get Their Information?

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 National Data on Caregivers 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. However, if they have questions about what they read, they have no one to ask for clarification.

Research Takes Time

Researching information takes a lot of time that most caregivers don’t have. When they have time, it’s often late at night when medical offices are closed; therefore, they cannot call someone to ask questions. Furthermore, searching online for something you are unsure how to find is difficult, especially when you are tired and your brain is mush.

Healthcare Professionals are Busy

If you do decide to ask your doctor, we all realize how busy they are. Many walk out the door as they answer our questions or tell us they will get back to us – some do, and some don’t. The point is that most don’t have time for long discussions. They can hand us some articles to read and a broad summary on the topic, but a detailed account is not likely to happen.  They schedule patients fifteen minutes apart in most physician offices, which does not allow detailed impromptu training.

What Tasks Do Caregivers Perform?
  • 99% assist the person receiving care with instrumental activities of daily living (shopping, cleaning the house, transportation, etc.)
  • 60% help with activities of daily living (bathing, eating, toileting, etc.)
  • 26% coordinate treatment and appointments
  • 58% help with medical/nursing tasks
  • 40% provide complex, high-intensity nursing care tasks
Increase In Complex Care At Home

Of particular interest is the amount of complex care required by caregivers when providing care to family members.  Often, the care needed is like that received in a hospital setting but delivered by untrained caregivers. The healthcare systems have delegated responsibility to the family caregiver for complex nursing or medical task to reduce overall healthcare costs and increase hospital bed availability.

Caregivers Work 24-Hours

As a result, the unpaid family caregiver has a 24-hour shift where they are (1) helping their family member with all of their personal and medical needs, (2) conducting and coordinating all of their business affairs, and (3) helping with the upkeep of the home and personal belongings, (4) keep up with family member’s multiple medical appointments and treatments.  In addition, the caregiver must take care of themselves, their own families, their own homes, maybe a job, and maybe their health concerns. 

Limited Resources Available

The unfortunate fact is that in many rural areas, resources to support family caregivers do not exist. In rural areas, the distance to travel prohibits access.  In municipalities, the issue is just as bad with systems being present but over-burdened. The problem boils down to too much need and not enough resources. 

Caregiving Data were taken from the “Caregiving In the U.S. 2020” Survey

“Caregiving in the U.S. 2020” was conducted by Greenwald & Associates using a nationally representative, probability-based online panel. More than 1,700 caregivers who were age 18 or older participated in the survey in 2019. First conducted in 1997, with follow-up surveys in 2004, 2009, and 2015, the Caregiving in the U.S. studies are one of the most comprehensive resources describing the American caregiver. The 2020 study was funded by AARPBest Buy Health Inc. d/b/a GreatCallEMD Serono Inc.Home Instead Senior Care®The Gordon and Betty Moore FoundationThe John A. Hartford FoundationTechWerksTransamerica Institute, and UnitedHealthcare.”

Caregiving in the U.S. 2020 



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