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Caring for caregivers

Al Waller: According to Former First Lady, Rosalyn Carter, and I quote….

"There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers." End quote.

Well, today’s episode of ClearPath – Your Roadmap to Health and WealthSM is dedicated to recognizing November as “National Family Caregivers Month,” an annual celebration that recognizes and honors family caregivers across the country. Caregivers put their hearts and souls into caring for their loved ones, an invaluable service that often comes without a paycheck.

Joining me is Catherine Collinson, head of nonprofit Transamerica Institute® and its Transamerica Center for Retirement Studies® to discuss family caregiving, how it can impact a caregiver’s own health and financial well-being, as well as recommendations for helping caregivers. I’m your host, Al Waller.

Now Catherine, the number of family caregivers has increased dramatically in recent years and with the aging of a significant segment of the baby boomer population. I suspect that number is only going to accelerate, right?

So, what can you tell us about this trend?

Catherine Collinson: The National Alliance for Caregiving and AARP estimate that the number of U.S. adults who are family caregivers – and these can be families of kin or families of choice – the number of family caregivers increased from 43.5 million in 2015 to 53 million in 2020 – and I’ll note the 2020 estimate was formulated prior to the onset of the pandemic.

Looking towards the future, as the Baby Boomer generation ages, long-term care costs continue to increase, and workforce shortages intensify, especially in the health care and long term care sectors. We can only expect that the number of family caregivers will continue to increase.

Al: Catherine, I know you and your team at Transamerica Institute conducted some research about caregivers, so tell us what you have discovered to date.

Catherine: I’d like to share some findings from a report coming out next month by Transamerica Center for Retirement Studies. It’s based on a survey of workers that we conducted in late 2020. At the time of the survey, we found that at some point during their working careers, nearly four in ten workers – 39 percent, indicated they had served as a caregiver for a relative or friend, including 24 percent who were currently caregivers and 17 percent who had been a caregiver in the past.

And what is so noteworthy, balancing a full-time job and providing care is really hard work and a really difficult thing to juggle. We found that almost nine in 10 caregivers had made one or more adjustments to their work situation because of becoming a caregiver, ranging from missing days of work and reducing work hours to some even taking unpaid leave and others even quitting their jobs altogether.

Al: Depending on the nature of the work you do, holding down a job is about as much as can be expected. But throwing caregiving on top of it is an unbelievable strain. As I’ve mentioned, in my experience as an HR manager and consultant, I worked with a broad cross section of employees, many who were caregivers in the workforce.

As a matter of fact, many were a part of what we call the “sandwich generation”, who had children with special needs that needed extra time from the parent, as well as having their parents above them that were aging and perhaps experiencing the early stages of dementia.

In an HR function and capacity, we wanted to make some accommodations but had to walk a very thin line and be careful of setting precedents because what you do for one, you have to do for the other.

I saw two cases where employees had great careers, were full of energy, and were ready to continue to pursue them. And because of an early onset of Alzheimer’s with their spouses, they had to retire.

Now, I understand you’ve also found striking differences between the experiences of caregivers versus non-caregivers in the workforce.

Catherine: Yes, indeed we did. Although we cannot prove the extent of the causality, the differences in our survey findings among caregivers and non-caregivers were quite striking. The survey findings really helped to illustrate the stress and strain that caregivers are experiencing. I’ll give you a few examples:

  • 46 percent of caregivers often feel anxious and depressed compared with only 36 percent of non-caregivers.
  • 62 percent of caregivers were negatively financially impacted by the pandemic, compared with just 42 percent of non-caregivers.
  • 55 percent of caregivers personally experienced one or more employment impacts as a result of the pandemic, compared with just 36 percent of non-caregivers. When I reference employment impacts, one or more employment impacts ranging from things like reduced hours and pay to layoffs, furloughs, and some even early retirement.

Al: While I find this data sobering, I can’t exactly say that I’m totally surprised.

From a personal perspective, 6 years ago my dad, after enjoying 85 years of great health, robust and playing tennis three times a week with men 30 years his junior, was tragically diagnosed with pancreatic cancer. Then three months later, on top of that, my mother falls and breaks her hip. Good grief!

But “fortunately” (and I use that term relatively), I had two siblings living locally, as well as a consulting gig that provided me some flexibility to work remotely. Those factors combined with the matrix scheduling we were able to put together and having the financial resources for some outside care enabled us to take care of my folks on a day to day and night-care basis.

We were the lucky ones, even though it was a grueling period. I know there are a lot of people out there – I’ve worked with them – that have limited financial resources trying to accommodate their caregiving and I might add “flying solo” at the same time too. It’s a really tough situation to be between.

So Catherine, what are some other ways that we can help others ease this heavy lift?

Catherine: Easing the load on caregivers is what I call an “everyone opportunity”. Everyone can help/pitch-in and help make the lives of caregivers easier.

I’ll break them into 3 groups: policymakers, employers, and those who I like to refer to as “everyday people” (individuals and families).

I’ll start with policymakers. Policymakers pave the way. They can encourage employers to offer flexible work arrangements so caregiving employees can more easily balance their employment and their caregiving responsibilities. Policy makers can offer financial assistance, for example, a proposed tax credit to help offset the out-of-pocket costs associated with caregiving.

Importantly, policymakers could provide Social Security credits to help caregivers who forego their employment altogether in order to provide care. So, for Social Security…[this would mean] to recognize their contribution in the work force as an unpaid caregiver, and they would still be able to accrue benefits, which right now, they cannot.

Al: Well, I’m on board with all the above and I’ll also add that employers can and should step up to the plate by supporting their caregiving employees in meaningful ways.

This could include offering flexible work arrangements, as I was fortunate enough to have, telecommuting and also offering an employee assistance program with caregiver resources such as referrals, backup care and counseling.

And I’ll add, it’s encouraging to note that some employers are now beginning to offer paid time off or paid leave for caregivers. I mean, let’s face it, all of these things can help caregivers. They can help employers attract, as well as retain, valuable employees as well. I think in this day and age, we have all become aware this has become absolutely critical.

Catherine: Al, I couldn’t have said it better myself. Speaking from my own experience, many years ago, when I was a caregiver, I was just so fortunate. My employer accommodated flexible work arrangements and the ability to work remotely.

By doing so, they enabled me to stay on the job. Without that support, I would have faced an extremely difficult decision of whether to give up my employment – which would have meant giving up my income and my benefits. That type of decision, had I gone down that path, could have undermined my own long-term financial security.

Al: It’s incredible how fortunate you were. Back in the day, not many employers were broad-minded and open to that.

Now, based on your team’s research as well as your own experience as a caregiver, what are some tips that you can offer caregivers to make their lives more manageable?

Catherine: One thing for everyone to keep in mind, and especially caregivers, it is so easy to become fully engrossed in the needs of the care recipient that you as the caregiver lose sight of your own health and your own financial well-being. It’s so important you take care of yourself in addition to taking care of the care recipient. I’m going to offer you tips for listeners to consider:

  • Take care of your own health and wellness. This includes the basics…eating right, exercising, getting plenty of sleep, managing stress, and getting your routine check-ups and screenings. Without your own health, you cannot help care for others. It’s so important you focus on that, and don’t feel guilty about it.
  • Ask for help and accept help from others to share the caregiving responsibilities or help you with non-caregiving responsibilities. This is hard for a lot of people to do. But by enlisting the support of others in your caregiving responsibilities or in families where there are multiple family members that can help out, it really helps ease a disproportionate burden that might otherwise fall on a single family member.
  • If you are employed, research what types of programs your employer offers to caregiving employees. It’s been an increasing trend in recent years. Employers are doing more to support their caregiving employees.
  • In addition to flexible work arrangements, many employers also offer an employee assistance program that may include referrals or discounts to back-up care when you need it. 
  • Learn about the Family and Medical Leave Act (FMLA) which is the federal law that requires covered employers to provide their employees with protected, unpaid leave for qualified medical and family reasons. The FMLA allows up to 12 weeks of unpaid leave from an employer in a 12-month time period. To learn more about FMLA and whether you are eligible, check with your company’s human resources department or visit the Department of Labor’s website at dol.gov.
  • Explore programs that provide financial assistance to caregivers. There are some programs out there. Some states have programs for Medicare recipients that the care recipient can use to pay non-professional caregivers, which means they could presumably pay a caregiving family member. Another avenue potentially, if the care recipient has long term care insurance, check whether that long term care insurance coverage may pay for a family caregiver versus a hired caregiver. Lastly, if you’re incurring a lot of expenses on behalf of the care recipient, check to see if you might be able to claim them as a dependent for tax purposes.

Al: It’s comforting to note that there actually are a lot of caregiver resources out there that our listeners may quite frankly not be aware of.

So, where can they go to learn more about what’s available?

Catherine: Great question, Al. There are lots of terrific organizations, so I’ll name just a few:

And, lastly, since this podcast began with a quote from Former First Lady Rosalynn Carter, I’d like to end by highlighting the outstanding work of the Rosalynn Carter Institute for Caregivers.

Al: Briefly, before we sign off, where can our listeners find your team’s research?

Catherine: You can find our 21stAnnual Retirement Survey of Workers on our website at transamericainstitute.org. Follow us on Twitter at @TI_insights and @TCRStudies to stay up to date with our latest publications, including our forthcoming report that has a chapter on caregivers.

Al: Well Catherine, many thanks for this impressive body of work.

And thank you all for listening to ClearPath—Your Roadmap to Health & Wealth.

I’m your host Al Waller…and please join us next week when we delve into those important details about employer benefits and health care enrollment season.

ClearPath: Your Roadmap to Health & Wealth is brought to you by Transamerica Institute, a nonprofit private foundation dedicated to identifying, researching, and educating the public about retirement security and the intersections of health and financial well-being. You can find our weekly podcast on WYPR’s Podcast Central and mobile app, wherever you get your podcasts, and at transamericainstitute.org/podcasts.

This podcast is produced by Transamerica Institute with assistance from WYPR.

Al Waller is a long-time Baltimore native and employment expert with a 30-year career in leading and advising locally and globally based corporations on matters including: Talent Acquisition and Retention, Employee Relations, Training and Development.
Catherine Collinson is the founding president and CEO of nonprofit Transamerica Institute and its Transamerica Center for Retirement Studies, and she is a champion for Americans who are at risk of not achieving a financially secure retirement. With two decades of retirement industry-related experience, Catherine is a nationally recognized voice on workforce, aging, and retirement trends. She was named a 2018 Influencer in Aging by PBS’ Next Avenue. In 2016, she was honored with a Hero Award from Women’s Institute for a Secure Retirement (WISER) for her tireless efforts in helping improve retirement security among women.