Taking Care of the Caretakers

It’s been six years since the last comprehensive study of caregivers in the US. A lot has happened since then—America is getting grayer, people are living longer, and the safety net, which was never terribly large, is fraying. A new report, just released, shines light on caregivers at a crucial moment: America is getting older, people are living longer, and Congress just launched a bipartisan caucus, “Assist Caregivers Today,” that’s supposed to come up with policy recommendations. 

The big picture hasn’t changed much over the past few years, though the study’s authors at the AARP Public Policy Institute and the National Alliance for Caregiving hasten to remind us that we can’t really compare the numbers because the methodology has changed. The change reflects the discovery that since 43% of adults rely exclusively on cell phones for communication and don’t have a landline—and another 17% have a landline but rarely use it—it was time to stop doing surveys by randomly selecting numbers from a telephone book. The current study uses a complex process of both cell and landline phone numbers along with residential addresses for the initial screening and on-line interviews (with a laptop and WIFI connection supplied if needed) for the final survey.

Whether or not the results are new, they continue to be startling. All told, just over 39 million Americans over the age of 18 report providing hands on care to another adult in the previous twelve months. Their average age is 49, but 10% are over 75. The vast majority of care is for a relative (85%), usually for a parent or parent-in-law. And these caregivers spend an average of 24.4 hours on care every week. One quarter of caregivers spend over 40 hours a week attending to their caregiving responsibilities.

I was particularly interested in reading about what caregivers actually do. Two out of three attend to health care issues, with 57% of this effort devoted to complex medical or nursing tasks such as catheter and colostomy care, tube feeding, or injections. Most of the caregivers engaged in this kind of technical assistance have no prior experience with anything medical.

What was also striking was what caregivers said when the were asked about the kinds of information they felt they needed to do a good job. The main areas were keeping the recipient safe at home (42%) and managing caregiver stress (42%), though almost everyone said that they wanted more information about one or more of the domains suggested, including making end of life decisions (22%), managing behaviors (12%) and managing incontinence (11%). And interestingly, only one third of the respondents report that a clinician ever asked them about what kind of help they needed as a caregiver.

Where do we go from here? You can join a new organization, the Caregivercorps, that is devoted to persuading both political parties to adopt a plank on family caregiving in their party platform. You can write to the members of ACT, the Assist Caregivers Today caucus chaired by Senator Michael Bennet, with your suggestions about legislative support for caregivers. And you can recommend re-introducing the National CareCorps Act, a bill that would have established a national service dedicated to helping older individuals modeled on the Peace Corps. For "you are not obligated to complete the work, but neither are you free to desist from it."