Caregivers Deserve and Need Care Too

July 9, 2020 Lisa Freeman

What qualifies you as a caregiver? If you are raising a fur baby, does that make you a caregiver? Does nagging at your spouse to go to the doctor, but then deciding to make the appointment for him or her, make you a caregiver? Or do you have to be taking care of someone that is sick or elderly to get that title?

I often ponder this question and wonder when, and if, I will officially fall into a caregiving role. Right now, I am lucky — my parents, although in their mid-70s, are still willing and able to live on their own. I don’t have any children, unless my cat counts. And well…like I mentioned, I do have a husband who sometimes needs a little “extra attention.”

So how do I know if I’ve earned the title of caregiver? According to a quick Google search, all of the above apply and I am already a caregiver in some capacity. But for the sake of this post, we’re going to focus on this definition — as defined by The Family Caregiver Alliance:

“A caregiver — sometimes called an informal caregiver — is an unpaid individual (for example, a spouse, partner, family member, friend or neighbor) involved in assisting others with activities of daily living and/or medical tasks.” 

So what does a caregiver look like?

Believe it or not, about 50% of people who are caregivers don’t identify as one. To give you a better idea of what a typical caregiver looks like, consider the following statistics from an AARP study:

  • Over half of caregivers (60%) are female.
  • On average, caregivers are 49 years old.
  • Over three quarters of caregivers (85%) provide care for a relative, with 49% caring for a parent or parent-in-law.
  • On average, caregivers spend 24.4 hours a week providing care to their loved ones.

It’s important to keep in mind that some of these numbers may actually be higher, due to non-reports.

What sorts of tasks do caregivers handle? Most work with providers and are part of the care team for their loved one. They play an instrumental role in ensuring that their friend or family member receives the best care possible. Caregivers advocate for that person when needed. A majority of their time is spent helping individuals with at least one activity of daily living or ADL. Examples of common ADLs include helping people in and out beds and chairs, or assisting with personal hygiene and restroom use. Caregivers also provide transportation, take care of the grocery shopping and do housework.

Caregiver burnout is real

There’s no question that caregivers are busy helping others, but who is looking out for them? Very likely — no one. In the AARP study cited earlier in this post, one third of caregivers (32%) said that a healthcare provider, such as a doctor, nurse, or social worker, has asked about what was needed to care for their loved one. While that’s good news, here’s the bad news — only 16% of caregivers say a healthcare provider has asked what they need to take care of themselves.

What makes this is worse is that caregivers are more likely to develop chronic conditions themselves, such as high blood pressure, high cholesterol or stress related health concerns. When asked, close to 17% of caregivers rated their health as fair or poor. And 22% of those caring for someone else felt that their health had gotten worse as a result of caregiving. To make matters worse, just about 72% of family caregivers report not visiting the doctor as often as they should. More than half (55%) say they skip medical appointments for themselves.

The AARP’s robust and well-documented study contains compelling statistics, but perhaps you are not convinced yet that caregiver burnout is a serious problem. Let’s look at some data that we uncovered when partnering with health plans to run health risk assessment programs:

  • Many people need at-home care. 28% of people admitted that they need help caring for themselves at home, and furthermore, 31% of those people don’t have a caregiver or support person to help them.
  • Caregivers don’t have time to get the care they need. When asked if their responsibilities as a caregiver prevented them from getting the care they need, more than 3,000 people said yes and are struggling to take care of themselves while caring for others.
  • Cultural background plays a role too. Approximately 20% of caregivers in the United States are Asian-American. In many traditional Asian cultures, families often expect that sons and daughters take on the responsibility of caring for older adults, including parents and grandparents. During our outreach to Chinese speakers, 20% indicated that their caregiver responsibilities kept them from getting the care they needed. In addition, 100% of males aged 18 to 49 reported that they were caregivers.
  • Care recipients acknowledge that caregiving is demanding. We asked care recipients whether they thought their caregiver has a hard time giving them the help they need. Approximately 3,500 respondents (16% of those asked) replied yes to this question.

What can we do to help our caregivers?

If care recipients are worried about their caregivers and caregivers themselves are saying that their work is a burden, what can we do to support them? At the end of the day, it’s important to acknowledge caregivers’ hard work and dedication to their loved ones. At the same time, caregivers must accept that their lives can’t always take a back seat to others’ needs — that may be okay once in a while, but it can’t be the norm. Individuals and healthcare organizations need to recognize that caregiving isn’t always a choice. In some cases, no other options exist and people must assume the caregiving role — sometimes reluctantly. Caring for a close relative, like a spouse or parent, is often more emotionally stressful than caring for another relative.

Fortunately, health plans have the opportunity to serve both care recipients and caregivers. Outreach programs targeted at caregivers are an effective way to engage with this group and to provide them with helpful information. Sometimes all a caregiver wants and needs is more information on how to manage their own stress.


Health engagement solutions like HMS’ Eliza can help. To learn how HMS can help your organization effectively communicate and check-in on your caregiver populations, schedule a conversation today.

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