Caregiver Trends In The U.S. Indicate Grave Concern: Figuratively Speaking

October 24, 2021 /

1 Day 1 Week is two months old this weekend and it will be the first time we get to experience November’s National Family Caregiver’s Month with you. This is a perfect time to review the U.S. caregiving landscape. Before doing so, I want to share with you some exciting news.

As I’ve mentioned in previous email updates and weekly blog posts such as last week’s Music: Uplifting Caregivers & Patient Advocates, One Song At A Time, two new features are being developed. Well, we’re ahead of schedule with the first one! We’ve pushed to make that happen and it will appropriately launch during National Family Caregiver’s Month. This new feature is an ongoing podcast series focused on anything and everything, related to caregiving and patient advocacy. From thought leaders to everyday caregiver/patient advocates, we will bring you viewpoints, standpoints, outlooks, perceptions, angles, takes, evaluations, assessments and more.

Often supplementing the written blog entries, each month there will be between two and four podcast episodes. These conversations between me and our guests will be posted as a video link, with possibly an audio session here and there – if for whatever reason it’s the only way to have an amazing guest participate.

Regarding the second of the new features, I had a great meeting this week with my lead partner on the project. It is a big undertaking and we’re in the process of scoping out all initial aspects. The launch is anticipated for the second half of 2022, with possibly a beta in the first half. I know, that’s far off…but since what we’re planning has never been done before for caregivers and patient advocates, we believe it’ll be worth the wait. 🙂

So…back to reviewing the caregiving landscape with National Family Caregiver’s Month a week away. Let’s look at some of the extensive key findings from the AARP Caregiving in the U.S. (2020) report. If you click on the report link, you’ll see that “extensive” may be an understatement. By breaking it down into separate mini-sections below, my goal is to bring forth information from the report in a relatively brief and poignant big picture view.

30,000 Foot View

1 in 5 Americans (21.3 percent) are caregivers to some extent of an adult or child with special needs. That’s 53 million adults, up from 43.5 million in 2015. Reflective within this number is an increase of 8 million adults providing care to a family member or friend who is age 18 or older. Quite significant increases!

As you may have already thought, the increase in aging Baby Boomers (born 1946 to 1964) that require more care is a big (if not the most significant) reason for these increases. Consider: the oldest boomers turned 74 in 2020 and by 2030 all will be at least 65. With just that in mind, you can imagine the exponential numbers of caregivers moving forward and what the AARP Caregiving in the U.S. report will likely say in 2030!

There are other factors for the increase in caregivers, which are noted in the AARP 2020 report. Those include limitations or workforce shortages in health care or long-term services and supports, increased efforts by states to facilitate home- and community-based services, and increased numbers of Americans self-identifying as caregivers to some extent.

All of this of course brings along so many challenges for individuals, families, communities, and the country. I will continue to weave these throughout my blog posts and in the upcoming podcast series.

Caregiving By Family & Friends

Of all caregivers for adults, 89% are for a relative. This includes 50% of those being for a parent or parent-in-law, 12% a spouse/partner, 8% a grandparent or grandparent-in-law, and 6% an adult child. Also, interestingly, and wonderfully touching, 10% provide care to a friend or neighbor. Whether you identify with any of these caregiving situations, and especially if not, please pause for a minute…close your eyes, and visualize…the humanity of it all.

It’s quite heartwarming…to think that 53 million American adults are caregiving for another human being, whether family or otherwise.

Reasons Adult Care Recipients Need Care

There’s been an increase since 2015 in some key areas:

  • long-term physical conditions, up 4% to 63%
  • emotional or mental health issues, up 6% to 27%
  • memory problems, up 6% to 32%, which includes Alzheimer’s or dementia, up 4% to 26%

This, along with other reported factors such as an increase from 1.5 to 1.7 conditions of care recipients, indicates increasing complexities and support needs.

Physical Responsibilities

Related to Activities of Daily Living (ADLs), such as bathing/showering, dressing, feeding, personal hygiene, toileting, and functional mobility, 6 out of 10 caregivers provide help. Approximately the same number report helping with medical/nursing tasks. These figures are effectively the same as 2015, which suggests that although the numbers of caregivers have significantly increased, the responsibilities of each new one haven’t been lessened. This also likely means additional help for caregivers continues to be elusive.

Purpose/Meaning Compared To Stress/Health Impact

When we think about the 51% of caregivers who feel their role has given them a sense of purpose/meaning, it’s important not to lose sight of the fact that 21% of caregivers overall report they feel alone. It stands to reason that this is often brought on or accompanied by physical, emotional, and financial stressors. Likely related, caregivers reporting their health status as excellent or very good diminished from 48% in 2015 to 41% in 2020 – yielding a direct, if not completely proportional, increase of those reporting fair or poor health from 17% to 21%. This is a challenge for caregivers because stressors may expedite their natural aging process. That not only has a huge impact on them individually, but also on families, communities, and the country as a whole.

Financial Impact

These often are significant. 18% of caregivers report high financial strain and 45% experience at least one financial impact: almost 30% stopped saving, and 23% have taken on more debt. While this has short-term impact on the lives of caregivers, the long-term effects are most concerning – especially if the caregiving situations last a long time.

Looking at this further, 22% used up personal short-term savings and 12% used up long-term savings, such as for retirement and education. Even further, 19% have left bills unpaid/paid late, with another 15% of caregivers borrowing from family or friends. Maybe worst of all, 11% have been unable to afford basic expenses such as food.

Length Of Caregiving Situations

For those caring for adults, caregivers provide care on average for 4.5 years. In light of that, it’s important to note that there’s an increasing proportion providing care for 5 or more years – up to 29% from 24% in 2015.

The Work / Caregiving Mix

While there’s certainly a wide range of responsibilities that caregivers can/do take on, it’s reported that 61% of them work simultaneously and the same percentage (though not necessarily the same people) experienced at least one work-related impact. For those working, 53% report going in late, leaving early or taking time off to meet their caregiving responsibilities, with 10% having to give up work completely or retire early.

Employer Support

There’s been an uptick since 2015, with 39% of caregivers reporting some workplace benefits such as paid family leave (up from 32%) and 58% reporting paid sick days (up from 52%.) It’s very likely there are various reasons for these policy changes, related and unrelated to the caregiving needs of employees. So, while there is some progress by employers and governments, 61% of caregivers still report having no workplace paid family leave. There’s a lot of work to be done in this respect, both from a numbers and comprehensiveness standpoint!

Caregiver Needs And Financial Assistance

Although caregivers recognize the need for services and support, actual use remains low. Only 14% report taking a respite, with 38% feeling it would be helpful (up from 33% in 2015.)  I personally know there are various reasons for that, which include a fear that certain/all things won’t get done well or at all, in an emergency situation we are best situated to manage it, and other reasons.

The most common support needs that caregivers report are:

  • 26% keeping their care recipient safe at home
  • 26% managing their (caregiver’s) stress
  • 25% navigating forms, paperwork, and eligibility for services

From a financial assistance standpoint, to help offset financial burdens, 68% of caregivers would like an income tax credit and 65% a program to pay caregivers.

Looking Forward

It’s apparent from respondents within the AARP Caregiving in the U.S. (2020) report, that there’s a serious lack of planning and preparation. While 54% expect to be caring for someone in the next five years, only 44% of those report their recipient have some semblance of plans in place and only 45% of caregivers have their own future care plans in place.

With the significant increase in unpaid caregiving, along with a population that continues to age and live longer with more challenging chronic situations, there’s a growing systemic challenge in the U.S. Can the country move quickly enough to support these ever-growing populations of caregivers and the cared-for?

It’s an incredibly complex question with an exponentially multifaceted answer.

I don’t know and time will tell.

What I do know…

1 Day 1 Week will be looking further at components of this in future blog posts and in the upcoming podcast series.

And…

No matter who we are, we all will benefit from a caregiver (most likely a family member) to some extent before we leave this earth!

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Caregiver/Advocate Takeaways

  • Considering it’s already 2021 and all Baby Boomers will be at least 65 by the year 2030:
    • there are a lot of caregiver support issues that need to be expeditiously addressed at federal and state levels.
    • there are significant opportunities for the private sector to help caregivers directly or indirectly. As an example, companies can continue developing technology to assist caregivers and patient advocates manage various aspects of care, in both hands on and hands off ways.
    • it’s important that employers step up with meaningful policies, or they risk significantly reduced productivity and employees leaving – the latter of which typically costs them more money when factoring in finding new candidates, onboarding, training, and reaching productivity levels of those that resigned or were let go.
    • without effective changes throughout the caregiver support and services chain, the negative financial impact of caregiving on individuals, families, and society will continue to grow exponentially.
      • 10,000 Baby Boomers reach age 65 each day!
  • For the love of our families, country, and humanity…individually, and collectively, it’s important we advocate for the caregiver/advocate – to help alleviate at least some of the growing systemic stress and burdens!
  • As always, regardless of what is written in a post, it is important…to read and understand the American Hospital Association’s Patient’s Bill of Rights.

Thanks for reading Caregiver Trends In The U.S. Indicate Grave Concern: Figuratively Speaking. As with other 1 Day 1 Week posts, you’re welcome to share your thoughts below and/or share a story as a full blog post of your own. Whether you’re a caregiver, patient advocate, or involved in caregiving/patient advocacy in some way, the worldwide community of caregivers and patient advocates can benefit individually and collectively from “hearing” what you share about your experiences.