Informal Caregiving? Free Caregiving? Seriously?

In a nice blog post the other day, AARP’s Lynn Friss Feinberg reminded me of one of my great pet peeves: The way some so-called experts describe the help family and friends provide loved ones with care needs. Lynn called them out for using the phrase “informal caregiving,” as if this were merely some sort of casual relationship. You know, something like old pals getting together every couple of weeks for tennis.

The phrase itself acknowledges how people misunderstand what family caregivers do, or their connection to those they are helping. Can you imagine describing a parent’s care of a child as informal? It would be beyond bizarre. Yet somehow, it is a widely accepted way to label an adult child helping a parent, or a wife assisting her husband. As Lynn asks, “Is there anything casual about an adult daughter helping her father use the toilet?”

In part, the phrase is a clumsy attempt to distinguish between family support and paid aides. But it is also reflection of how little some value the role family members play in supporting relatives with chronic conditions or disabilities. But language that dismisses family caregiving also helps frame in unhelpful ways the policy debate over how we deliver and pay for long-term supports and services.

“Informal caregiving” isn’t even the worst of these descriptions. That award goes to “free caregiving.” The implication: There is no cost to the support that child gives to her parent, or a wife provides for her frail husband.

The cost, in fact, is enormous. Anybody who has done it (and both Lynn and I have) knows about the price they pay—physically, emotionally, and financially.

Take just the financial cost. One survey reports typical caregivers spend $5,500-a-year out of pocket to assist a family member.

And that is just the tip of the iceberg. A 50-something woman who quits her job to care for a parent will forego more than $300,000 in lifetime income. Not only will she reduce her current wages, but she’ll also give up retirement income by contributing less to her 401(k), losing her employer match, and diminishing her future Social Security benefits.

People who talk about “free” or “informal” care really mean is that no money changes hands for family care. Nobody is paying for home health aides, assisted living, or a nursing home. Specifically, neither government nor private insurance is paying. Families just do it and somehow absorb the cost. Lynn and her colleagues at AARP estimate that economic value of family caregiving topped $450 bill in 2009.

And that’s why this language really matters.

If family caregiving becomes widely described for what it really is–rewarding for sure, but also very hard–people might demand help. That’s what happened in Japan.

Working women who were also caring for their mothers and mothers-in-law gave their own label to what they were doing: Caregiver hell. That’s a long way from “informal caregiving.” And it had a powerful effect, driving the government to create a national social insurance program for long-term care.

Here, policymakers live in mortal fear that family caregivers will similarly demand help. If, for instance, everyone eligible for Medicaid benefits took them, the cost of the program would explode. But people don’t, since it often means moving to a nursing home.

Make the program too good and people will use it. They even have a name for the phenomenon: The woodwork effect. Like cockroaches, people will come out of the woodwork to apply for benefits. Offended yet?

Similarly, private insurers understand that many families will continue to care for their aging parents without paid help, even if they have long-term care insurance. This phenomenon is so widespread, it is built into rates. Without it, already-high premiums would increase even more.

So, we blithely talk about informal care and free care. Makes it sound so easy. As if the issue will just float away.

By | 2014-05-14T17:26:20+00:00 May 14th, 2014|Aging, aging in place, family caregivers|4 Comments


  1. Sharon w. May 16, 2014 at 9:00 pm - Reply

    In reference of ‘tip of the iceberg’ is familiar. Although there wasn’t an opportunity to assist a Parent as they live in another state.. recently lost my Father…

    Retired then pursued College to develop on a desire of helping others..
    .(the elder population is @ 3x that of the 25-30 year old).

    Tom Brokaw wrote of the ‘Greatest Generation’, hence your, mine and others Parents…
    fighting, struggling to make ends meet with 3-5 children they adore and raise with
    Honor, Gratitude….Respect…

    Understand fully now how it is going away. Sad that Offspring work 7 days a week trying to emulate what had been taught, perhaps the reason is that Corporation no longer value the Employee..providing a ‘HUGE’ bonus in return w/o
    benefits, 401K…a building block for Economic reason into ‘the’ future.

    America is a society of Desire, Affluenza—hey it worked in a Court of Law…sorry you
    weren’t born with that SILVER SPOON….no thanks…would rather have Honor, Respect and Gratitude…and go peacefully and conscience.

  2. Steve Schoonveld May 21, 2014 at 3:18 pm - Reply

    What we are talking, basic symantics now? Would you rather call it unprofessional care?

    Not every family has your calculated financial costs associated with caring for a loved one. Many family members take this as a badge of honor to care for their loved ones. In fact a majority of families take care of 2+ of 6 ADL dependent family members every day without looking for a government program to pay for it. It’s called having a baby!

    I am offended by your characterization that private insurers build into the rates a “phenomenon” of informal care. In fact many insurers support informal or family caregivers through traning and relief well before the policyholder is benefit eligible. This is to assist the policyholder to save the policy for more intense care needs or in the hybrid case, the death benefit or return of premium.

    To not embrace the presence of informal care and to try to pay for it with a one size fits all program that cannot meet the unique needs of families is very self defeating for any robust LTC financing program.


  3. Steve Schoonveld May 22, 2014 at 9:06 am - Reply

    in·for·mal/ɪnˈfɔrməl/ Show Spelled [in-fawr-muhl] Show IPA
    1. without formality or ceremony; casual: an informal visit.
    2. not according to the prescribed, official, or customary way or manner; irregular; unofficial: informal proceedings.
    3. suitable to or characteristic of casual and familiar, but educated, speech or writing.

    • Ann Twomey May 28, 2015 at 1:42 pm - Reply

      Thank you Howard. Experts are so focused on their “expertise” they are incapable of seeing the wood for the trees. “Informal Carers” is an insult to the family member, be they spouse, son, daughter, sibling, niece or nephew, who out of love and respect for their loved one take care of them in their hour of need. That is what family is all about. “Loving Carers”

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