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OPINION

Caregiving is a critical service under stress

Caregivers help with injections and infusion pumps. They operate ventilators, home dialysis, and feeding tubes. They manage care of post-surgical incisions and other wounds. And they need help.

Mary Ann Boor sits with her husband David, whose progressing Alzheimer’s disease is intensifying her responsibilities as his caregiver, at their home in Huron, Ohio, May 18. A recent study found significantly higher rates of anxiety, depression, and disturbed sleep among the caregivers.
Mary Ann Boor sits with her husband David, whose progressing Alzheimer’s disease is intensifying her responsibilities as his caregiver, at their home in Huron, Ohio, May 18. A recent study found significantly higher rates of anxiety, depression, and disturbed sleep among the caregivers.Maddie McGarvey/NYT
Globe Staff/Adobe

You won’t find family caregiving in a classic definition of infrastructure. Yet the 42 million Americans who provide care for loved ones — representing all races, income levels, and generations — provide a service that is critical to society.

Like roads and bridges, family caregivers must bear up under severe stress. Financial sacrifice, medical responsibilities, and a relentless challenge to balance in-home duties with outside jobs often gowith the role. A lack of guidance to navigate a confusing, disjointed system of care only adds to the stress.

In many ways, the pressures are increasing, and the coronavirus pandemic exposed our failure to value and invest in a safe and effective long-term care system. Filling the cracks in our tenuous system of providing and funding long-term care in the system will require investment and innovation in both the public and private sectors grounded in the realities that caregivers confront every day.

In recent years, people’s homes have become health care’s new frontier, and family caregivers are increasingly handling tasks once performed only by nurses and other trained professionals. With little fanfare, caregivers have become a new group of health care providers, adding to a workload that already includes household tasks, personal care, shopping, transportation, coordinating various services, and managing finances.

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They help with injections, infusion pumps, and other forms of complex medication administration. They operate ventilators, home dialysis, and feeding tubes. They manage care of post-surgical incisions and other wounds. Six in 10 caregivers now have such responsibilities, AARP research shows, and there may be a cost to all these pressures. The health of caregivers themselves has declined over the last several years, a trend that is especially pronounced among Hispanic and Asian populations, women, and individuals with less education.

COVID-19 only made things harder as local services shut down. An AARP survey with S&P Global found that 3 out of 4 family caregivers reported rising stress in the pandemic — with more than a third citing a “strong” increase.

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The unpaid efforts of caregivers have real worth, and it makes sense to think of family caregiving as a large, diverse — and valuable — industry. In Massachusetts, 844,000 family caregivers provide services worth more than $11 billion a year. Nationally, unpaid caregiving was worth $470 billion in 2019, a figure that is probably higher today.

Caregivers reflect a cross-section of the population and share many of the same needs. They spend an average of 26 percent of their income on caregiving activities, including housing, medical, and other expenses.

But look closely, and differences jump out. Underserved communities face particular challenges and financial strain. Hispanic/Latino caregivers report spending almost half (47 percent) of their income on caregiving activities, with Black Americans spending 34 percent, Asian Americans spending 22 percent, and white Americans spending just 18 percent.

Two-thirds of Black American and Hispanic/Latino caregivers provide help with medical and nursing tasks, yet for white caregivers the figure is barely above half. A rural-urban gap also exists, with 62 percent of rural caregivers helping with medical and nursing tasks, compared with 56 percent in more populated areas.

Solutions are desperately needed, and the public and private sectors each have a role to play. The goal should be a future in which caregivers’ quality of life is transformed with supportive policies and products that ease their burdens.

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Financial support, guidance on home medical treatments, navigating the health care system, caring from a distance, monitoring loved ones’ safety and personal finances, assisting individuals with dementia, and safeguarding caregivers’ own health (physical, mental, and financial) are just some of the areas where people need help.

Family caregivers should not face financial sacrifice. Fortunately, policy initiatives to assist caregivers are gaining bipartisan support and have taken effect in many states, with more in the pipeline. In Massachusetts, Senators Jason M. Lewis and David M. Rogers are sponsoring legislation that would establish a tax credit of up to $1,500 for eligible caregivers.

At the federal level, the recently introduced Credit for Caring Act would provide tax credits of up to $5,000 to eligible working family caregivers. The Biden administration’s infrastructure proposal includes $400 billion for home- and community-based services, although middle-class families generally will not be eligible for Medicaid support. Government policy reforms are only part of the answer, however. Technology and innovation can create a better future for family caregivers.

Caregivers themselves can contribute to these efforts. After all, who understands their needs better than those on the front lines? Over the past five years, venture capitalists have poured more than $2.5 billion into startups aimed at the market for elder care and home health care, according to Crunchbase News, a service that covers innovation and investment.

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But business remains in the early stages of creating the products and services that caregivers will embrace. They need more solutions tailored to specific needs — solutions that are culturally appropriate and user friendly. Companies need to look to data on where caregivers spend their time, money, and emotional energy. Entrepreneurs should be sure to seek insights from consumers who have provided care.

As the nation’s population ages and in-home care becomes more routine, innovations will be needed more than ever. No one was looking as family caregiving became part of the infrastructure of America’s well-being. Its role is now far too big to ignore. Keeping it strong should be a national priority.

Nancy LeaMond is chief advocacy and engagement officer at AARP.