Michael Novak, former US Ambassador to the United Nations Commission on Human Rights, said that the family unit was the “original Department of Health, Education and Welfare”.
Today, these words could not ring truer, as approximately one in five Americans is a family caregiver, for a total of nearly 53 million—nearly a 20% increase from 2015—per a recent survey. While the number of family caregivers will continue to grow in the coming years, it may not be enough to meet our future needs.
Of family caregivers, or people who have provided care to an adult or child with special needs during the preceding year, over half are ages 50 years or older, while roughly half are taking care of a parent. Naturally, older caregivers typically care for someone in their peer group, while younger caregivers care for someone of the older generation. (For example, 73% of caregivers who are 75 years or older are caring from someone 75 years or older; and, 49% of caregivers who are 75 years or older are caring for a spouse, partner, or sibling.)
Roughly two-thirds of caregivers live with their care recipients, and roughly two-thirds of these live in the caregiver’s home, while the balance live in the care recipient’s home. Where the caregiver does not live with the care recipient, more than half of caregivers report visiting the care recipient more than once a week, while only a quarter visit less frequently than weekly.
Family caregivers spend an average of nearly 24 hours per week providing care, with a median of ten hours. About 20% spend 40 or more hours per week caring, while slightly less than half spend an average of less than eight hours. Care recipients who live in the caregiver’s home receive an average of 37 care hours per week, which is more than double the average number of hours of those who do not.
Impressively, a majority of caregivers reported providing these weekly care hours while balancing a job: over 60% of family caregivers were employed at some point during the preceding twelve months of caregiving. About 60% of these caregivers made work accommodations because of caregiving, such as taking a leave of absence, arriving late, passing up a promotion, or retiring early. One in five family caregivers become employed, took a second job, or delayed retirement because of the financial impacts of caregiving. This is understandable given the income to medical expense ratio for people 65 years and older. In 2019, half of the US population older than 64 years reported annual income of $27,500 or less (median income $27,398; average income $46,010). Since 1998, annual medical expenses for this population have increased by an average annual rate of about 4%, to over $12,000, and account for about half of this age cohort’s median income, or about 30% of its mean income.
Partly because of caregiving, three-fourths of family caregivers incurred out-of-pocket expenses, with an average amount of over $7,500 15% spent $20,000 or more . Household and medical expenses account for two-thirds of this spending. These costs are higher for family caregivers whose care recipients live more than an hour’s drive away (~$12,000), or whose care recipients suffers from dementia (~$11,000). To finance these expenditures, caregivers primarily consume their own savings or incur debt.
The challenges endured by family caregivers lead to self-reported stress, both emotional and physical. One in four caregivers indicates that caregiving makes it difficult to care for his/her own welfare; this response is more prevalent from caregivers who care for a spouse, who live with their care recipient, or who feel that there was no choice in assuming the caregiving responsibility. Unfortunately, over half of family caregivers report difficulty in relieving these stresses by engaging affordable local services, such as delivered meals, transportation, or in-home health services. This is particularly the case with higher-hour or high intensity caregiving situations.
Despite these stresses, it is generally accepted that the care recipient’s quality of life is better when aging-in-place at home. While many family caregiver tenets will not change in the coming years, one that surely will is the increasing rarity of the family caregiver. The US Census Bureau forecasts that seniors will outnumber children by 2035. The growth rate of the number of people 65 years and older from 2010 to 2020 (3.4%) was double that from 1970 to 2010, and more importantly, nearly seven-times that of the 18-to-64 years age cohort. Based on these demographic trends, increasing life expectancy, and the increasing prevalence of chronic diseases, we should expect an increasing demand for family caregivers.
Family caregivers devote their time, well-being, and finances to their loved ones—their value cannot be overstated. Looking into the future tells us that the “original Department of Health, Education, and Welfare” will continue to be unrivaled.