A Peek at the Public’s Experiences & Expectations of Caregiving

Recently, the National Opinion Research Center at the University of Chicago and the Associated Press conducted their second major study on expectations surrounding ongoing living assistance, which included getting help in your own home, in a family member’s home, in a nursing home or in a senior community. In their new study, they interviewed a nationally representative sample of 1,419 adults 40 and better. This article discusses the study’s findings on experiences receiving and providing care, how caregiving impacts family relationships, and expectations about support for care. (For details on the report’s findings on policy, financing care, and sources of information on care, click here).

Overall, 40 percent of the individuals interviewed had no experience with ongoing living assistance, either as a provider or a recipient. Of those who had experience with ongoing living assistance, 73 percent had experience only as a care provider, 17 percent had experience as a recipient and provider of care, 7 percent had experience only as a care recipient, and 4 percent only provided financial assistance for care. Overall, 7 percent of this over-40 population was currently receiving ongoing living assistance, and another 4 percent had received such care at some point in the past. Of the care recipients, 86 percent had received care in their home or in a friend’s home, or were cared for by a family member or friend. Forty-two percent of care recipients had received care from a source outside their family, such as in a nursing home, senior community, or from a professional home health care aide.

As for the caregivers, 41 percent reported giving care to their mothers, 17 percent to their fathers. Eight percent provided care to a mother-in-law and 3 percent provided care to a father-in-law. Fourteen percent had provided care to a spouse or partner, 10 percent had provided care to an extended family member, 9 percent to a child, 6 percent to siblings, and 6 percent to grandparents. Six percent had provided care to a non-family member.

Of these caregivers, 83 percent reported caregiving as being a positive experience. Seventy-seven percent reported caregiving strengthened their personal relationship with the person they cared for, and 7 percent reported caregiving weakened that relationship. However, 51 percent of caregivers said that caregiving caused stress in their family. Those who cared for a partner or spouse were most likely to report caregiving as weakening their personal relationship with the person they cared for. Those who cared for their fathers were most likely to report that it strengthened their relationship.

Although around 70 percent of those interviewed expect that they can depend on their family a great deal or quite a bit in times of need, much smaller percentages reported that they expected a great deal or quite a bit of support from the health care industry. Only 44 percent expect a doctor, nurse, or other health care provider to provide this much support. Thirty-four percent feel this way about Medicare, 33 percent feel this way about the health insurance system, and 17 percent believe Medicaid will provide a great deal or quite a bit of help. Interestingly, 49 percent of those individuals who have received ongoing living assistance think that they will receive a great deal or quite a bit of help from Medicare, compared to only 32 percent of individuals who have never received such assistance having this expectation. There was also a similar 17 percent difference between attitudes on Medicaid between these those who had or had not received ongoing living assistance. The study also found that the degree of confidence in Medicare providing help increases with age. This degree of confidence in Medicare also appears to be increasing, with 6 percent more people in 2014 thinking that Medicare will provide quite a bit or a great deal of help compared to those asked in 2013.

Additionally, 3 in 10 people surveyed thought it was very or extremely likely that an aging family member or friend will need ongoing living assistance in the next five years, with another 3 in 10 thinking that this is somewhat likely. Of the individuals who think a family member or close friend might require long-term care, 32 percent think that they will be personally responsible for providing that care, 57 percent think that someone else will be responsible and 6 percent think it will be a combination of themselves and someone else. Of those individuals who expect to provide some care within the next five years, only 3 in 10 feel extremely prepared. Fifty-one percent feel somewhat prepared, and 18 percent feel not too prepared or not prepared at all. Most individuals in this study had also done little planning. Only 4 in 10 have discussed preferred types of living assistance, and only 22 percent had helped a family member or close friend make a financial plan to pay for their ongoing care.

These data suggest that the majority of adults 40 and better have some experience with ongoing living assistance, but many of them are still unprepared for the realities of providing and receiving care.  Although caregiving was a positive experience that strengthened their relationship with the care recipient, participants also acknowledged the stresses of caregiving. Moving forward, people anticipate that ongoing living assistance will be needed either by themselves or others. However, few participants reported planning for ongoing living assistance and not many felt very prepared to provide care for others. Overall, this study adds to the evidence suggesting an ongoing need to address caregiver stress. Furthermore, it suggests a need for educational efforts that can better prepare individuals in the public at large for the task of caregiving.

Source:

The Associated Press and NORC. Long-Term Care in America: Expectations and Reality. http://www.longtermcarepoll.org/PDFs/LTC%202014/AP-NORC-Long-Term%20Care%20in%20America_FINAL%20WEB.pdf. Accessed June 3, 2014.

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