Tag Archives: advocacy

The Financial Costs of Family Caregiving: A Stark Reality

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200-lynn-friss-feinberg-aarp.imgcache.rev1320086023339-1Lynn Friss Feinberg, MSW
Senior Strategic Policy Advisor
AARP Public Policy Institute

(This post was originally published on the AARP blog and is re-posted with permission.)

Families and close friends are the most important source of support to older people and adults with a chronic, disabling, or serious health condition. They already take personal responsibility for providing increasingly complex care to the tune of $470 billion (as of 2013). That figure, representing family caregivers’ unpaid contribution in dollars, roughly equals the combined sales of the four largest U.S. tech companies (Apple, IBM, Hewlett Packard and Microsoft, $469 billion) in 2013.

The out-of-pocket hit

Caregiving families feel great uncertainty and high anxiety about how they will continue to pay for long-term services and supports (LTSS) for a relative or close friend with increasing self-care needs. And for good reason. Family caregivers not only provide help with daily activities and carry out complex medical and nursing tasks, they also spend a considerable amount of money out of pocket for caregiving.

Out-of-pocket spending for caregiving generally refers to the purchase of goods and services on behalf of the person the family caregiver is helping. This can include housing, medical and medication premiums, copays, meals, transportation, mobility and other assistive devices, supportive services (such as adult day services and paid home care), and other goods and services.

A recent AARP research study finds that more than 3 in 4 family caregivers (78 percent) report incurring out-of-pocket costs as a result of caregiving. In 2016, family caregivers of adults on average spent nearly $7,000 on out-of-pocket costs related to caregiving, amounting to 20 percent of their total income. Among racial or ethnic groups, out-of-pocket spending for caregiving was highest among Hispanic/Latino family caregivers. They spent an average of $9,022, representing 44 percent of their total income in 2016.

Caregiving, therefore, can have a major impact on one’s current and future financial situation. A consensus report from the National Academies of Sciences, Engineering, and Medicine concludes that family caregiving for older adults poses substantial financial risks for some family caregivers. Especially vulnerable to financial harm are families caring for older relatives with significant physical impairments or dementia, low-income family caregivers, and those who live with or live far away from their older relative who needs care. Continue reading →

National Strategy Needed to Support Invisible Heroes of Health Care—Family Caregivers of Older Adults

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TF-cropped-photo-by-andy-camp-webTerry Fulmer, PhD, RN, FAAN, AGSF
President, The John A. Hartford Foundation

(This post also appeared on The John A. Hartford Foundation blog.)

For far too long, the nearly 18 million family caregivers of older adults in the United States have been largely invisible to policymakers and our health care system, despite filling an absolutely essential role. The contributions these modern-day heroes make to the care of older adults is indispensable, and often comes at a significant cost to their own health, well-being, and financial security.

Families Caring for an Aging America, the sweeping new report from the blue-ribbon committee convened by the prestigious National Academies of Sciences, Engineering, and Medicine, offers a clear, comprehensive, and compelling rationale for creating a national strategy to elevate the position of family caregivers within our health care system.

As the report indisputably documents, we have a growing population of older adults living longer than ever before with greater needs for assistance.  We have family members and friends performing increasingly complex care tasks for their older relatives and friends with little or no training.  We largely marginalize and ignore caregivers, which puts them and their loved ones at risk for harm.

If we are truly to reform health care, we must expand the idea of “person-centered care” to “person and family-centered care.” As a geriatric nurse, I have seen the need for a family-centered approach first-hand.  Too often family members, with little or no training or support, are thrust into the position of being responsible for everything from navigating the labyrinthine health care system to performing complicated medical tasks. This might be medication management and wound care, tasks that are normally provided by trained doctors and nurses.

Ensuring that caregivers not only receive the support and training they need, but have a role and a valued voice in decisions affecting their loved ones, are critical to improving care for older people. Continue reading →