Unsung Heroes
“The simple act of caring is heroic.”
— Edward Albert1
In 2007, my spouse and I were vacationing when I received a phone call no child wants. My father had been driving and he could not remember where he was going or how to get home. He eventually figured it out, but after that, he never drove again. For the next six years, my mother became his primary caregiver, with us children helping when we could. We all grieved as their relationship evolved from loving partners to essentially mother-child.
Each November, we take time to honor family caregivers. According to the Family Caregiver Alliance, 43.5 million individuals have provided unpaid, or informal, care to an adult or child in the past 12 months. The value of informal care has risen steadily, from $375 billion in 2007 to $470 billion in 2013. As a comparison, the 2013 total for unpaid care exceeded the combined paid (formal) home care and total Medicaid spending in the same year. Regardless of their employment status, unpaid caregivers report a 27 percent decrease in their own positive activities because of their responsibilities.
Females represent three-quarters all caregivers; are more likely to spend more time than males providing care; and are more likely to shoulder the heavier burden in types of care. This changes in spousal care, where duties are divided almost equally, and among couples who identify within the LGBTQ communities, where the hours males spend providing care is more than double that of males in the general population.
According to the National Alliance for Caregiving and American Association of Retired Persons (AARP), by race, Whites account for 62 percent of all caregivers and are more likely to be older than their Hispanic, African American, or Asian American counterparts. Hispanic and African American caregivers, however, share a higher care burden and spend more time on average providing care. Moreover, African Americans are more likely to be sandwiched between caring for an older person and for someone who is under 18 years old. Approximately 85 percent of all care, informal or formal, is for a relative or loved one.
Many populations are vulnerable when caregiving is needed. For example, according to the Department of Health and Human Services (HHS) Rural Task Force, elders in rural areas are more likely to reside alone, be at or near the poverty level, and suffer from at least one chronic condition or physical disability. Average driving distance for health care is about 45 miles.
Several studies indicate LGBTQ+ elders also face caregiving challenges. Currently, about 3 million persons 55+ identify as LGBTQ+, with the numbers expected to double in the next two decades. LGBTQ+ persons are twice as likely to age alone, and three to four times less likely to have children. In addition, they are more likely than their non-LGBTQ+ peers to express financial concerns, to feel lonely, and to fear not being able to live independently. Moreover, up to 44 percent have not been up front with their healthcare providers about their orientation, for fear of discrimination.
Military personnel and veterans are also vulnerable populations. According to the RAND Military Caregivers Study (2014), 5.5 million caregivers were attending to veterans; one-fifth of those became caregivers after 9/11. Thirty percent of veteran caregivers support their charges for over 10 years compared to 15 percent of non-veteran caregivers. Military caregivers, particularly after 9/11, tend to be younger, employed, and have a minimal support network. Their care recipients are more likely to have no health insurance, have a mobility-limiting disability, and be diagnosed with one or more mental health issues.
Children with disabilities pose unique caregiving challenges throughout their lifetime. The National Center for Education Statistics indicates as of 2021, 15 percent of all public school students were receiving specialized services under the Individuals with Disabilities Education Act (IDEA). Established in 1975, IDEA mandates appropriate public-school education for eligible students determined to have a disability affecting learning. When not in school, formal caregiving for special needs children proves particularly challenging, with parents with disabled children experiencing more difficulty finding care (34 percent vs. 25 percent).
As a country, the United States lags far beyond most industrialized nations with the amount of health insurance and support programs available to caregivers. Recognizing the adverse financial and health impact this has on American society now and in the future, both the Government Accounting Office and HHS have begun studying the types of programs other countries have in place to best template in this country. By addressing the needs of caregiving for both provider and recipient, we can promote a more equitable strategy for those in need. ▼
1 Actor and activist Edward Albert cared for his father, actor Eddie Albert, for 10 years. Mr. Albert, Sr, died in 2005. The following year his son succumbed to lung cancer.
Sharon A. Morgan is a retired advanced practice nurse with over 30 years of clinical and healthcare policy background.