Much has been written – but not enough has been done – about the plight of the nation’s estimated 42 million people, almost all untrained family members, who are serving as primary caregivers for a loved one with chronic health problems. Some of these are caring for children with disabilities, but many more are at the bedside of an aging parent or other family member or friend coping with Alzheimer’s or other chronic age-related diseases. Now, thanks in part to a new law signed in January by President Trump – a law that passed with enthusiastic bipartisan support – a coalition of community groups, government agencies and non-profits many finally be stepping up to take some of the load off the shoulders of America’s overworked and underappreciated caregivers.
New Laws Promise Help
We just read this encouraging article on the Kaiser Health News website, titled “Family Caregivers Are Getting A Break — And Extra Coaching.” It describes how the new federal law, called the CARE Act, requires the Department of Health and Human Services “to set up an advisory council and develop a blueprint for government action on financial, workplace, respite care and other caregiver issues.” This name of this law is patterned after similar state laws championed by the AARP, and stands for “Caregiver Advise, Record, Enable” – and while that may sound like a bureaucratic mouthful, all these state and federal efforts seem to be paying off. The CARE Act is “more than just a law,” said Elaine Ryan, AARP vice president of state advocacy and strategy, quoted in the Kaiser Health News article. “It’s a change in the practice of health care.”
According to the article, the CARE Act or similar legislation has now been enacted in 42 states. These rules “require hospitals and other nursing facilities to provide training for caregivers who perform medical tasks, and to record them as the ‘caregiver’ when patients are admitted or released from hospitals or nursing facilities.” In states without that law, “patients can be dismissed from the hospital without family members being told or briefed fully on what care the patient needs.” (At present the list of states with no law on the books requiring training for caregivers includes Alabama, Florida, Georgia, Idaho, South Carolina, South Dakota, Vermont and Wisconsin. A new law in Kansas takes effect this summer.)
The Backbone of Health Care
The Kaiser article recites some of the sobering statistics concerning the adverse consequences that can come from serving for months or years as a caregiver. According to a 2015 Johns Hopkins study, caregivers are almost twice as likely to suffer from emotional and physical problems compared with non-caregivers. They also are three times more likely to have productivity problems at work, which can lead to loss of earnings or failure to advance. Until now, however, some of these problems have been woefully misunderstood and underappreciated, just as many fail to appreciate the vital role caregivers play in health care. In the words of the Kaiser Health News analysis, “A study by AARP found that 46 percent of family caregivers perform medical/nursing tasks, 78 percent of family caregivers manage medications, and 53 percent of family caregivers serve as care coordinators. The majority said they received no training.”
One Texas gerontologist calls caregivers “the backbone of our health system.” He adds, “If caregivers go away, we have a problem.” An AARP study has found that caregivers, mostly women, are presently providing an estimated 37 billion hours in unpaid care to relatives or close friends. The estimated cost of this care if someone were paying for it is a staggering $470 billion. That’s why serving the needs of caregivers is absolutely essential.
Coaches Offer Training and Support
The Kaiser article describes several examples of how this idea works. In Denver, caregiver coaches, usually social workers or nurses, are trained to help caregivers transition their patient to home care. They meet with caregivers before patients are discharged from a hospital, then have a one-hour coaching session at the patient’s home, plus three follow-up phone calls. Studies have shown that having transition coaches can drop hospital readmission rates dramatically, by up to 50 percent. These coaches also help interpret medical advice, because, as the article days, “when doctors give instructions, the medical talk can go right over their heads.” A similar program in California has trained thousands of in-home caregivers, treating them as “a partner in the health team,” in the words of one hospital executive. The caregivers are trained in their role and receive the support they need when the burden of care becomes overwhelming.
Part of that support comes in the form of recreation and fun, says Kaiser. Community groups are starting to get more intentional in organizing events and outings designed to give caregivers a respite, such as an innovative program described in the article that takes place at the National Gallery of Art in Washington, DC. Who knows? Perhaps this article might spur some of our AgingOptions blog readers to contact local arts organizations and other groups to prompt them to come up with new ways to get caregivers and those they love out of the confines of the home, even for a few hours. If you hear of similar programs here in the Pacific Northwest, let us know about them.
Planning is Essential
No matter what your family situation, as you look ahead to retirement it is absolutely essential that you adopt a comprehensive retirement strategy – one that goes far beyond the basics of financial planning or picking the right insurance policy. Our approach to retirement planning, called LifePlanning, is the most comprehensive planning strategy we know of, weaving together financial and medical planning with a critical look at your housing options and choices plus a well-crafted legal plan to make certain you and your estate are protected. Finally, LifePlanning includes tools to ensure that your family is aware of and supportive of your wishes. If this sounds like a definition of “retirement peace of mind,” it is!
So the next step is up to you, and it’s a simple one. Please invest a few hours and join Rajiv Nagaich from AgingOptions at an upcoming LifePlanning Seminar, at no cost. Come with your retirement questions and see whether you don’t agree that an AgingOptions LifePlan is the retirement plan you’ve been searching for! You’ll find details here on our Live Events page, where you can register online for the event of your choice (or contact us for assistance).
It will be our pleasure to meet you at a LifePlanning Seminar soon.
(originally reported at www.khn.org)