Attitudes and Beliefs About Caregiving in the U.S. Findings of a National Opinion Survey

An Executive Summary

As our population ages, caregiving (defined as providing unpaid care for a loved one who is ill, disabled, or frail) is expected to touch nearly all American families. It is estimated that family caregivers provide unpaid services valued at $306 billion a year, an amount comparable to Medicare spending in 2004. Although family caregivers are usually untrained for the tasks they perform, they now provide about 80 percent of all long-term care services in this country.

The medical progress that has brought us increased longevity comes at a time when families are less equipped than in previous decades to provide family care. Not only are families smaller and more geographically dispersed, but many family caregivers juggle work and childrearing with their caregiving responsibilities. Moreover, caregivers must now deal with complicated medical equipment and procedures and function as their loved one's health care advocate with little training and information about where to get help.

The significant challenges facing today's family caregivers also come at a time when the baby boom generation is beginning to reach retirement age, leading many in the public health community to ponder if the American public is prepared to become family caregivers. Based on the most recent Census Bureau forecasts, by 2030 the number of people 65 and older will more than double in 26 states. As the graying of America escalates, so will the impact on families providing caregiving functions.

To determine the extent to which caregiving is thought about by the American public, Johnson & Johnson Consumer Products Company commissioned a telephone survey of 1,018 adult Americans aged 18 and over. Conducted in October 2005 by Opinion Research Corporation, the poll finds that those Americans who have yet to face the experience of family caregiving are often “unprepared to care” and this lack of preparedness could have serious social implications as our baby boomer generation continues to age.

What follows is a summary of these research findings.

1. Family caregiving is commonplace among the general public.

Today, an estimated 120 million adult Americans (57 percent) are either providing unpaid care to an adult family member or friend or have provided this care in the past. This leaves only 4 in 10 adults (43 percent) who have never been a caregiver.
Currently, 22 percent of the population -- approximately 46 million Americans -- is providing care to an adult relative or friend.
Reflecting an increasing trend, 44 percent of these family caregivers are men (56 percent are women) and the majority is over the age of 45. Today, one-fourth (24 percent) of caregivers are between the ages of 45 and 54, while 18 percent are 55- to 64-year-olds and 17 percent are aged 65 and older.
Approximately 73 million Americans (35 percent) have provided care in the past and their experience has significantly affected their attitudes and beliefs about caregiving in the future. Of these individuals, 56 percent are middle-aged or older women.
Family caregiving is prevalent across all economic levels and ethnic groups. Fifty-nine percent of non-Hispanic Whites in the U.S. are or have been caregivers, as compared with 53 percent of African-Americans, and 51 percent of Hispanic adults.
Two-thirds of the adult population (66 percent) -- or more than 138 million Americans -- believe they will need to provide care to someone in the future.

2. Family caregivers are caring for a wide range of adults, often for an extended period of time.

While more than a third of adult caregivers (37 percent) are caring for their aging parents (29 percent caring for mothers and 8 percent for fathers), many are also caring for an adult friend (14 percent).
These individuals also report providing care for years. Specifically, two-thirds of family caregivers (63 percent) report providing care for a year or more; 37 percent say they have provided care for 1 to 4 years, while another 26 percent have been caregivers for more than 4 years.
Of the remaining family caregivers, a third (34 percent) has provided care for less than a year while 22 percent provided care for less then 6 months and the remainder (12 percent) provided care between 6 months and a year.

3. Most Americans believe that they will have to provide care for an adult family member or friend in the future.

Two-thirds of the public (66 percent) expects to be caregivers in the future. Americans report that it is very likely (43%) or somewhat likely (23 %) that they will become a family caregiver at a future time.
When asked who they are most likely to care for, the largest number anticipates he or she will care for their mother (41 percent), father (12 percent), spouse or domestic partner (11 percent), mother-in-law (7 percent), sibling (6 percent) or father-in-law (2 percent).
The overwhelming majority of Americans -- 90 percent -- say they are willing to make significant changes in their lives to ensure that an adult family member or friend gets the care he or she needs.
Only 8 percent says they are not willing to make major lifestyle changes to care for a family member or friend.

4. Many adult Americans admit to being ill prepared to handle many of the tasks associated with being a family caregiver and worry that caregiving will interfere with their job responsibilities.

While nearly 8 in 10 respondents (79 percent) say they are very prepared to either spend time with an adult family member or friend and 7 in 10 (73 percent) say they are very prepared to take this person for doctor's visits and tests, far fewer say they are prepared for the more difficult tasks of caregiving. This includes such tasks as helping with basic activities, such as bathing, dressing and toileting, where only 4 in 10 (44 percent) say they are very prepared for this responsibility.
In general, people feel unprepared to handle medical and financial matters for a loved one. Respondents say that they are only somewhat (35 percent) or not at all (23 percent) prepared to handle health insurance matters for an adult family member or friend, while 29 percent say they feel only somewhat and 27 percent say they are not at all prepared to assist with medications.
Moreover, 64 percent worry about selling the home of a loved one and moving that person to another location or setting up a will or trust for that person.
When asked to anticipate the impact of being a caregiver on various aspects of their lifestyle, 32 percent of Americans are concerned that caregiving will have a negative impact on their job performance. This concern is justified, according to previous studies that find that caregivers can lose more than $650,000 in wages, Social Security benefits, and pensions over a caregiving “career.” (Source: MetLife Juggling Act Study, November 1999).
But despite these concerns, Americans expect that caring for a relative or family member for a year or more will have a positive effect on their relationship with their family (63 percent) and friends (53 percent). This demonstrates the emotional commitment that is the underpinning of family caregiving in the U.S.

5. Those who are or have been caregivers are both more prepared and more willing to provide care to a loved one in the future.

Compared to those who have never provided care to a loved one, three in four experienced family caregivers (77 percent) believe that they will need to play this role again in the future and are more willing to make significant changes in their lives to do so (94 percent compared to 86 percent of non-caregivers).
Perhaps due to their experience in providing care, former and current caregivers also feel more prepared to provide care to a loved one than do those who have not had a caregiving experience. This includes helping with the basic activities of daily living (54 percent versus 29 percent of non-caregivers), administering medications (54 percent versus 30 percent), and taking the loved one for doctor's visits and medical tests (83 percent versus 59 percent).
Moreover, former and current caregivers are more likely to see the positive aspects of the caregiving experience than others. Those with caregiving experience are more likely than other adults to believe that providing care to an adult family member or friend will have a positive effect on their relationships with friends (59 percent versus 51 percent) and on their overall mental health (54 percent versus 47 percent).

6. When it comes to themselves, the majority of Americans have not taken adequate steps to prepare for the possibility that they will need to be cared for in the future.

Behind this lack of action is the common attitude among the public that they won't need to be cared for. Nearly half (47 percent) of adult Americans -- 99 million -- hold this view.
In part because of this belief, a third of respondents -- 36 percent -- say they have never thought about needing care in the future. Among those who have pondered the matter, only 18 percent have thought a great deal about needing care while 45 percent have given at least some thought to the subject.
As a result, most Americans are not making the preparations they need to plan for the possibility that they will need to receive care for a year or more in the future. When asked what steps they have taken, only 4 in 10 adults have set aside funds to cover additional expenses (41 percent) or signed a living will or healthcare power of attorney (40 percent).
Moreover, only a third of all adults say they have purchased disability income insurance (35 percent), looked into independent or assisted living arrangements (35 percent), or purchased long-term care insurance (27 percent).
Most importantly, only 34 percent of Americans say they have talked with a family member of friend about providing care to them in the future.
Those most prepared for the eventuality that they may need care in the future are current and former caregivers. Compared to the rest of the adult population, caregivers are more likely to have thought about their potential need for future care (68 percent versus 56 percent of non-caregivers).
Former and current caregivers have also made more preparations than non-caregivers in the event they will need long-term care. This includes talking with a family member about their eventual need for care (42 percent versus 22 percent) and setting aside funds to cover expenses for care (49 percent versus 31 percent).

7. Despite the lack of preparations, most Americans still believe that a close family member will “be there” to care for them in the future, although they worry about becoming a burden to family members and friends.

When asked who they would prefer to care for them, more than half of the respondents (54 percent) said a family member and the vast majority (87 percent) have a particular person in mind as their caregiver.
Among those family members expected to provide care, Americans most frequently cite their spouse or domestic partner (37 percent) followed by their adult child (23 percent). Moreover, most Americans (75 percent) say they are extremely confident that they can rely on their anticipated caregiver to give them the personal care they need, and an additional 21 percent say they are at least somewhat confident.
At the same time, Americans do express concern about becoming a burden to their family or friends in the future should they become ill or disabled. Half of respondents say that they are either extremely (21 percent) or somewhat (30 percent) worried about being a burden in the future.
Concern about becoming a burden is more frequent among experienced caregivers, with more than half expressing such concern (55 percent) compared to less than half among non-caregivers (47 percent).

8. Few Americans have considered options to receive care beyond their family members or friends.

Only 22 percent say that if they need care or assistance for a year or more that they prefer to be cared for by a home health care service, and only 14 percent mentioned an assisted living center. Virtually no one (3 percent) says that he or she prefers to receive care in a nursing home.
At least 4 percent of the public -- more than 8 million adults -- says they have no one to care for them.

9. The involvement of health professionals and community agencies is necessary to help family caregivers get the help and information they need.

Almost as many former or current caregivers get their information from family members (26 percent) as from physicians (27 percent).
Other important resources on caregiving are community agencies in general (15 percent) and local senior centers (11 percent).
The poll also demonstrates the potential of the Internet as a resource on family caregiving. Here, 15 percent of the public say that they would use Internet sites to get initial help and information and 20 percent would use the Internet for additional research about specific caregiving matters.
Moreover, Americans who have not been caregivers in the past rate the Internet as their first choice for information should they become caregivers, ahead of other family members and doctors, who were the leading sources of information among experienced caregivers.
Unlike most other health information, the mass media has yet to be an important source on caregiving issues. According to the poll, only 2 percent of the public says they would turn to newspapers, magazines or television for information about caregiving.

The Opinion Research Corporation survey was conducted from October 13-16, 2005. Of the 1,018 adult Americans polled, 507 were men and 511 were women 18 years of age and older, living in private households in the continental United States.