Telling it like it is: Caregivers need support

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December 10, 2015

Family caregivers provide the bulk of support for the growing numbers of older Americans who need someone’s help to eat, bathe, dress, or perform other essential tasks of daily life. In many ways, that’s a good thing—after all, family members are supposed to help each other. But taking caregivers for granted puts some families at risk for diminished quality of life

Last week, presidential candidate Hillary Clinton put forward a proposal to recognize and support the essential role family caregivers play. Specifically, she proposes that family caregivers be eligible for:  

  1. a tax credit to offset up to $6,000 in expenses on caregiving for parents or grandparents, and
  2. credits toward Social Security benefits for time spent out of the paid workforce in order to give care. 

These measures—along with Clinton’s additional proposals to enhance training, wages, and opportunities for direct care workers and greater support for programs providing respite care—seek to address a growing policy concern: the personal and financial costs incurred by the millions of caregivers who are providing long-term services and supports to older family members. As one of us has written elsewhere, transforming the nation’s approach to caring for an aging population would require a far more substantial public investment, but proposals such as Clinton’s focus attention on the extent to which we depend on family caregivers to provide unpaid long-term services and supports, regardless of the real burdens it sometimes entails.

Today, about 5.5 million older Americans experience limitations in basic activities of daily living requiring personal assistance and are living at home or in the community. More than a third of this group suffers from dementia. Almost all (95 percent) of older people receiving help with basic activities rely on families for most or all their support; only about a third receive any paid assistance.

More than two-thirds of caregivers helping with basic tasks of living report that they experience substantial personal gains from their efforts—nearly 90 percent report satisfaction that their family member is well cared for. But some of them—especially those providing a lot of hands-on care—make enormous sacrifices. About one in four report physical and financial difficulties related to their caregiving activity, and nearly half report emotional difficulties. Caregivers’ financial costs include not only direct expenditures for things like home modifications, assistive technology, and paid assistance, but also lost income and retirement savings for caregivers who must drop out of the labor force or reduce their work hours. Resulting lifetime wage, Social Security, and private pension losses due to caregiving have been estimated to average as much as $300,000 for a typical caregiver affected.

Some older people will die before they need any long-term services. But at the other end of the spectrum, 14 percent will need more than five years of substantial care. The demands of caregiving are also variable—nil if both parents and in-laws fall into the first category; extraordinary if parents and in-laws fall into the latter category. None of us knows in advance which category we will be in. 

Given this unpredictable risk, there is no “us” and “them.” Clinton’s proposal offers one approach to sharing the risk and mitigating the high costs of caregiving some of us will incur. 

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