CHICAGO, Oct. 15, 2018 — Forty percent of Americans have experience providing long-term care to an older family member or friend, and many of these informal caregivers face significant health challenges themselves, according to a new survey from The Associated Press-NORC Center for Public Affairs Research. The survey finds 39 percent of caregivers have a health condition, physical limitation, or mental health condition that affects their daily life or limits their own activities, and 40 percent of this group say that providing care makes it harder to manage their own health.
“Family and friends provide the majority of care for the nation’s growing senior population. Unfortunately, their own personal and professional lives often pay the price,” said Trevor Tompson, director of The AP-NORC Center. “The survey shows that caregivers are struggling with their own physical and mental health, and they don’t always seek out care for themselves when they need it. Many have a hard time finding healthy ways to cope, instead turning to behaviors like sleeping less, eating more, or even drinking alcohol or smoking more. It raises the question: Who’s caring for our caregivers?”
Key results of the survey are included below:
- Eight in 10 caregivers pay for costs associated with caregiving out of their own pockets, and 13 percent spend upwards of $500 a month on these expenses.
- One-quarter have reduced how much they save for their own retirement as a result of caregiving expenses.
- One-quarter say that caregiving makes it harder to manage their own health.
- Only 54 percent have a plan in place for who would provide care in the event they were no longer able to do it themselves.
- Sixty-three percent cope with difficult caregiving situations by praying or meditating, but 44 percent sleep less and 17 percent drink more alcohol.
- Twenty-four percent of caregivers see their caregiving role as essential to their identity, 43 percent consider it important but not essential, 18 percent say it is not too important, and 14 percent say it is not important at all to their personal identity.
- A majority of caregivers who attend medical appointments give health care providers high marks for explaining things well (72 percent), listening carefully (67 percent), talking with them about the care recipients’ preferences for care (57 percent), and involving them in decision-making (53 percent).
- Only 24 percent of informal caregivers have talked with their own doctors about their responsibilities. But when these conversations do occur, three-quarters say their doctor spoke about how to take care of themselves.
- Caregivers under age 40 are more likely than older caregivers to stop or delay their education (21 percent vs. 9 percent) as a result of providing long-term care.
Since 2013, The AP-NORC Center has conducted annual surveys investigating older Americans’ experiences and attitudes regarding long-term care to contribute data to help policymakers, health care systems, and families address this issue. Prior years of the poll focused on Americans age 40 and older. For the first time, this year’s study also explored the perspectives of younger adults, those age 18-39, generating new insights into their personal experiences with caregiving and their views of long‑term care. This survey from The AP-NORC Center dives further into the experiences of informal caregivers age 18 and older, exploring the opportunity costs and health impacts on those who devote their time to providing long-term care.
This study, funded by The SCAN Foundation, was conducted by The Associated Press-NORC Center for Public Affairs Research. Data were collected using AmeriSpeak®, NORC’s probability-based panel designed to be representative of the U.S. household population. During the initial recruitment phase of the panel, randomly selected U.S. households were sampled with a known, non-zero probability of selection from the NORC National Sample Frame and then contacted by U.S. mail, email, telephone, and field interviewers (face-to-face). The panel provides sample coverage of approximately 97 percent of the U.S. household population. Those excluded from the sample include people with P.O. Box only addresses, some addresses not listed in the USPS Delivery Sequence File, and some newly constructed dwellings. Of note for this study, the panel may exclude recipients of long-term care who live in some institutional types of settings, such as skilled nursing facilities or nursing homes, depending on how addresses are listed for the facility. Staff from NORC at the University of Chicago, The Associated Press, and The SCAN Foundation collaborated on all aspects of the study.
Interviews for this survey were conducted between June 26 and July 10, 2018, with adults age 18 and older with experience providing long-term care to a family member or friend representing the 50 states and the District of Columbia. Panel members were randomly drawn from AmeriSpeak and invited to complete a screener to determine their eligibility for the survey. In addition, panelists who completed the 2018 Long-Term Care Trend Poll and answered that they had experience providing long-term care were invited to complete the screener. Those with current or past experience providing long-term care in the screener were invited to the survey, and 1,024 completed the survey—871 via the web and 153 via telephone. Interviews were conducted in both English and Spanish, depending on respondent preference. Respondents were offered a small monetary incentive ($4) for completing the survey. The overall margin of sampling error is +/- 4.1 percentage points at the 95 percent confidence level, including the design effect.
Complete survey findings are available at www.longtermcarepoll.org.
About The Associated Press-NORC Center for Public Affairs Research
The AP-NORC Center for Public Affairs Research taps into the power of social science research and the highest-quality journalism to bring key information to people across the nation and throughout the world.
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