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We Are Not Caring for Our Family Caregivers

Relatives do hard, scary tasks and deserve support, this expert says


I was fortunate to be able to attend the American Society on Aging’s massive Aging in America 2015 conference in Chicago, Ill. last month. One of the most interesting and well-researched presentations I heard was by Lynn Friss Feinberg, senior strategic policy advisor for the AARP Public Policy Institute.

Feinberg has done policy analysis and applied research on family caregiving and long-term services and supports for more than three decades, according to AARP. The following are excerpts from her talk. She began by discussing how caregiving is different today than it was in the past.

Lynn Friss Feinberg:

There is greater complexity today in the caregiving role. Older people have multiple chronic conditions. Families serve as both care coordinators and service providers. They serve as social workers and nurses, without adequate training — many feeling very scared about their role because they don’t know what they’re supposed to be doing to do it right.
 
People are discharged quicker and sicker from hospitals today, so nearly one-half of family caregivers of adults are carrying out health-related tasks in the home. This is a huge shift from the old days.
 
So what are these tasks that are so scary?
 
Managing complex medication schedules is one. Imagine if you are working at your job, but your grandmother came home from the hospital with prescriptions for 16 different medications that had to be taken. And you can’t afford to hire help in the home, so you have to run home periodically during the day to administer those medications.

(MORE: Why the U.S. Must Care for Its Elders Better)
 
There is also bandaging and wound care, tube feedings, managing catheters, giving injections and operating medical equipment in the home. As Susan Reinhardt from AARP Public Policy Institute has said, these are tasks that would make nursing students tremble. It’s really scary, and we are not trained to do that.
 
More Women Working and Caregiving
 
There are more women in the workplace, especially older women, and women today define the provider role as not only taking care of their families but also supporting their families economically. Among 55- to 64-year-olds, women’s labor force participation increased from 41 percent in 1980 to 59 percent in 2012 and is projected to reach 67 percent by 2020.
 
Another difference is the changing composition of families and households. There is more long-distance caregiving. When I grew up, my grandparents lived right down the street from me. My granddaughters live in California, I live in Maryland; things are not the same. There is increasing diversity, delayed marriage and childbirth, high rates of divorce. The divorce rate of the population 50 and older doubled between 1990 and 2010.
 
Fewer Adult Children to Help
 
In addition, there are fewer adult children. The percent of those 85 and older with no adult children is projected to increase from 16 percent today to 21 percent by 2040. So even if you have one of those three great daughters that we all wish for, there’s no guarantee that they’re going to be there when you’re in old-old age.

(MORE: America's Family Caregivers Need Assistance)
 
So who will be caring for whom?
 
On Changing the Language of Caregiving
 
If I can do anything in my career now, I would like to change our terminology.
 
We should definitely retire the term “informal caregiver” from our vocabulary in referring to the care of frail older people by family caregivers and friends. Because family members are traditionally not paid for the help they provide to their loved one, they’re sometimes described as informal. In contrast, health care professionals and social service professionals, as well as direct care workers like home care aides, are generally described as formal caregivers because they’re paid for their services and they’ve also received training.
 
But the jargon of “informal” devalues the complexity of what family caregivers are doing today — suggesting that the tasks the families undertake are casual, relaxed, easygoing and simple.
 
Now let me ask you: Is there anything simple and easygoing about providing care to a grandparent with Alzheimer’s disease who has escalating needs and more costly care? Anything casual about an adult daughter having to take her father to use the toilet? The term “informal” disrespects family caregivers by creating an impression that the efforts of family members and friends play only a minor role in long term services and supports and health care.
 
In reality, it is families that do almost all the coordination, and provide that care, too.
 
America's Care Gap
 
The U.S. is facing a care gap. The future looks unlike the past. We are facing rising demand as our population ages and shrinking families to provide supportive services.
 
No longer do we have what my grandparents and great grandparents have, which was seven, eight, nine siblings in their families to share the care. Although the family has historically been the major provider of care for older people with long-term services and support needs, the number of potential family caregivers has begun to inch downward.

(MORE: Building a Wishlist for Caregivers and Their Families)
 
Today, the caregiver support ratio has begun what will be a steep decline. We’re at the apex right now, then it’s going to go drastically down. In 2010, the support ratio was at its highest; there were 7.2 potential family caregivers for every person over the age of 80. But by now, in 2015, it has started the decline to 6.8 potential family caregivers for every person in the high-risk years of 80 and over.
 
By 2030, in just 15 years, as the boomers transition from family caregivers themselves into old age, the ratio is projected to decline even more sharply to 4 to 1. And by 2050 when all the boomers are in old age and will need help themselves, it will fall to less than 3 to 1.
 
These are really worrisome statistics, which brings me to my last point.
 
Facing Caregiving With Urgency
 
We need to treat family caregiving with new urgency and make it a priority on the national health care and long-term care agenda, in workplaces too. Family caregiving is one of the least appreciated, but most important, issues our country faces as we all age. But family caregiving is typically viewed as a private family issue and the responsibility of women in particular, and largely overlooked in public policy.
 
With the looming care gap, it’s time to ask this question: Are we asking families and close friends to do too much?
 
In my view, the debate should focus less on whether family or the public sector should be responsible for providing care and we should focus more on how family caregivers can be better recognized and supported if they choose to be a caregiver to keep them from burning out. And we should ensure that the choice that a family member makes does not have negative consequences for the individual or the family.
 
The current heavy reliance on family and friends as I’ve just described is just unsustainable in long-term care.
 
I want to leave with a quote from a colleague, Jonathan Rauch, who wrote an article in The Atlantic magazine called Letting Go of My Father in April 2010. He wrote that what we need “is for our nameless problem to be plucked out of the realm of the personal and brought into full public view, where help can find us.”

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