Americans largely associate the month of May with Mother’s Day, but few are aware that May is also Older Americans Month. As May is approaching, I am reminded of not only the many older adults living with chronic mental illness or some type of dementia but also their family caregivers.
In over three decades as a geropsychiatric visiting nurse, I vividly remember many of the families I have closely worked with, like the couple in their 80s caring for their only daughter who lived her entire adult life with schizophrenia or the husband who was dedicating the last few years of his over fifty-year marriage to caring for his wife diagnosed with advanced Alzheimer’s disease.
According to the 2016 American Community Survey one-year data, 49.2 million Americans are 65 years of age or older. By 2035, the older adult population in the U.S. is estimated to increase to 78 million, for the first time surpassing the projected number of children under the age of 18.
These facts are startling, as cognitive abilities, self-care and the overall ability to function independently diminish with age progression and many older adults will need to be cared for by family members every step of the way, even after they transition into long-term care. Based on these facts, the U.S. will most likely be faced with a family caregiver shortage within the next two decades.
The National Alliance for Caregiving describes a typical U.S. caregiver as a 49-year old woman who works full-time outside the home, is most likely raising a family and spends more than 20 hours per week providing unpaid care to a 69-year old female relative who needs care due to at least one chronic condition. According to AARP’s Valuing the Invaluable report, in 2013, there were an estimated 40 million American family caregivers who provided 37 billion hours of unpaid care to a disabled adult. This work had an estimated value of $470 billion, surpassing federal and state Medicaid spending for health care and long-term services and supports for that year.
These statistics should give us all pause to consider what will happen when this invaluable human resource becomes depleted as a result of the mental and physical burden imposed by caregiving or simply because of their own aging. Who is helping these millions of family caregivers and in what way?
Unfortunately, existing programs are not sufficiently funded to support family caregivers. The Older Americans Act (OAA) allocates funding for older adults in every state with the main purpose of assisting them to “age in place in their homes and communities.” An AARP’s Public Policy Institute recent report indicates that OAA grants to states that are dedicated to fund support for family caregivers translate into less than 1 percent of the estimated $470 billion unpaid care these caregivers provide for their family members.
There are, however, a number of pieces of legislation that have recently been signed into law or are in the process of being reviewed by Congress. The Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act was signed into law last year, charging the Secretary of Health and Human Services with developing a national strategy to support family caregivers with input from public and private advisory councils.
The Caregiver Advise, Record, Enable (CARE) Act was also signed into law and is being enacted in over forty states to identify and educate caregivers of hospitalized patients prior to their discharge home. This April, the Lifespan Respite Act was introduced for reauthorization in the Senate. If approved, the bill authorizes funds to be distributed within the next five years across participating states to support planned and emergency respite programs for family caregivers.
Although hard to attribute the recent legislative progress in support of family caregivers to one single event, it is important to note that the Gerontological Society of America with support from the John A.
Hartford Foundation and in partnership with AARP, the Alzheimer’s Association and the National Alliance for Caregiving hosted in 2017 Congressional Stories of Family Caregiving. Six U.S. Congress members described, among many challenges, the difficulties navigating a fragmented health-care system, the financial impact of caregiving and the emotional burden but also the rewards of caring for a close family member. Together, these six Representatives sponsored or co-sponsored eight pieces of legislation directly related to caregivers and caregiving for older adults; a momentum was created.
As individuals, we must seize this momentum and build on it. Whether you are a family caregiver yourself or know someone who is, this May raise awareness, educate and share with your legislators as many caregiving stories as you know. For a list of current key federal legislation relevant to family caregiving check the updates by the National Alliance for Caregiving pick a bill or initiative and let your voice be heard. Older Americans and their caregivers are depending on it.
Olimpia Paun Ph.D. is an associate professor in the College of Nursing at Rush University and The Rush Nurses Alumni Association chair in Health and Aging Process. She is also a geropsychiatric clinical nurse specialist and researcher. Paun is a Public Voices fellow through the OpEd Project.