National survey on long-term care: Expectations and reality

The Associated Press-NORC Center for Public Affairs Research has released the results of a major survey on long-term care in the United States. The study, the second on this topic done by AP-NORC, provides much-needed data on how Americans are, or are not, planning for long-term care as policy makers grapple with how to plan for and finance high-quality long-term care in the United States.

"Families are essential to providing long-term care so we wanted to explore their role further," said Trevor Tompson, director of the AP-NORC Center. "We conducted the first study in 2013 to establish a baseline of knowledge about what older Americans think about long-term care. The new study expands on our earlier work to include information about who is providing and receiving care, how caregiving impacts family relationships, and which policy and quality measures Americans age 40 and older think would improve long-term care."

The AP-NORC Center conducted 1,419 interviews with a nationally representative sample of adults who are at least 40 years old. Funding for the survey was provided by The SCAN Foundation.

Key findings from the study include:

• Americans 40 or older who have personal experiences with long-term care are more likely to be concerned about planning for long-term care and less likely to think they can rely on family as they age.
• One-third of Americans in this age group are deeply concerned that they won't plan enough for the care they might need when they get older, yet two-thirds report having done little or no planning for such assistance.
• Six in 10 Americans 40 and older have some experience with long-term care, either as caregivers, recipients of care, or financial providers of care. Those who have experienced long-term care tend to be female, lower-income, and in the baby boomer generation. These findings remain stable from the 2013 survey.
• Many Americans 40 or older rely on their families for long-term care, and caregivers provide ongoing living assistance to a variety of family members; 4 in 10 of caregivers have provided care to their mothers.
• Caregivers' experiences with providing care are mostly positive, though perceptions are shaped by demographics and specific family relationships between the caregiver and the recipient.
• Compared to 2013, Americans today are more supportive of a government-administered long-term insurance program, similar to Medicare, and think a number of measures would be helpful for improving the quality of ongoing living assistance.
• Americans lack information about ongoing living assistance. When they do get such information, they tend to hear about it from friends, family, or co-workers, although they have more trust in long-term care information they receive from experts.

"Thousands of America's baby boomers are turning 65 every day and learning the hard way that there isn't a good system in place to meet aging and long-term care needs," said Dr. Bruce Chernof, president and CEO of The SCAN Foundation. "This poll shows that a majority of Americans support system improvements to create the kind of care we want for older loved ones now and for ourselves in the future."

The 2014 survey included key questions from the 2013 study and found that most indicators remained relatively stable, including Americans' understanding of the long-term care system, personal experiences with long-term care, misperceptions of the cost of care and the role of Medicare, and the extent to which they are planning for long-term care for themselves and their family. The new survey does, however, reveal changes in opinions on significant public policy issues, including demographic shifts. For instance, nearly 6 in 10 Americans 40 and older (58 percent) now favor a government administered long-term care insurance program similar to Medicare, representing a 7-point increase from 51 percent in 2013. The shift in support spans a number of demographic groups, but is most pronounced among blacks (up 21 points from 2013 to 77 percent), those with a household income under $50,000 (up 13 points to 65 percent), and men (up 9 points to 57 percent).