By Susan Baida

The Families and Work Institute (FWI) published a new report last week on working caregivers of the elderly. The study reveals the prevalence of caregiving for the elderly and its impact on women amongst our country’s workforce. Titled “The Elder Care Study: Everyday Realities and Wishes for Change,” the report was released in conjunction with The Center for American Progress and the Alzheimer's Association’s Forum in Washington, D.C. and in partnership with “The Shriver Report: A Woman's Nation Takes on Alzheimer's.” To read the report in full, visit: http://familiesandwork.org/site/work/workforce/eldercare.html
 
Findings from the quantitative study were drawn from the 2008 National Study of the Changing Workforce by the FWI. The total sample included 1,589 people who reported caring for an elderly relative aged 65 years old and older. Here are highlights taken directly from the report: Almost one in two individuals in the workforce (42% or nearly 54.6 million employees) have provided elder care over the past five years.

 Among those who have provided care in the past five years, almost half (44%) have cared for more than one person.

• 17% of workers in the workforce are currently providing elder care.
• Among the entire workforce, women (20%) and men (22%) are equally likely to have provided family care in the past five years and equally likely to provide care at the current time (9% versus 8%). Although women and men provide care in roughly equal numbers, there are many differences in the way that these experiences play out in their lives.
• Women are more likely (44%) than men (38%) to provide family care on a regular basis rather than on an intermittent basis.
• In addition, women spend more time than men providing care on average. Women spend 9.1 hours a week providing care (an average of 6.4 hours providing in-person care and an average 2.7 hours providing indirect care), while men spend 5.7 hours as caregivers (an average 3.4 hours providing in-person care and an average 2.2 hours providing indirect care).
• Many of these caregivers are in the sandwich generation—46% of women who are caregivers and 40% of men also have children under the age of 18 at home. Just under half of the workforce (49%) expect to be providing elder care for a family member in the coming five years.
• Family caregivers work as many hours on average (45 hours) as those without caregiving responsibilities (44 hours).
• Although most working caregivers (55%) report that they would prefer to work fewer hours, only 23% have actually reduced their hours.
• Not surprisingly, many are experiencing a time famine: 71% report not having enough time for their children, 63% report not having enough time for their spouse/partner and 63% report not having enough time for themselves.

Interestingly, men who are providing care are now more likely than women caregivers to experience work-life conflict.

• 49% of men experience “some” or “a lot” of conflict compared with 42% of women.

For the qualitative study, a sub sample of 140 family caregivers were successfully contacted and interviewed about their experiences and wishes. These are highlights taken directly from the report: Family caregivers’ top wishes for the way in which workplaces could better support them as caregivers include:

• greater flexibility, more options for managing time;
• time off for elder care, especially paid time off without having to use up vacation time; and
• more understanding of their situation from management.

As far as support for elder care from other family members is concerned, caregivers have only one wish—more active involvement and help from others in the family. Though many family caregivers say others do help them in providing care, the level of support from other family members often falls short of the caregiver’s needs and expectations. Since the selection of caregivers we interviewed was random, one can only imagine that the views of some other family members might also be similar, with others feeling that he or she has an unfair burden, too.

When it comes to health care, our findings suggest that family caregivers need to play a very active role in their elder’s medical care, serving as their elder’s advocate within the health care system. One of the most alarming findings in our survey is that 36% of former family caregivers whose elder has passed away report that medical mistakes were made by professionals. In some cases, caregivers believe that these medical mistakes were severe enough to contribute to their relative’s death.

Top wishes for the way in which doctors, nurses and others in the health care system could better support family caregivers include:

• more frequent and better quality two-way communication with doctors and other medical providers;
• less overworked, more compassionate staff at medical and nursing facilities with the skills to listen and learn from the caregivers and the elders; and
• a more user-friendly, easier-to-navigate and less costly health care system.

In terms of their own aging, the caregivers present a bleak picture. Having experienced the elders’ aging and ailments, family caregivers tend to be both more aware of the challenges of growing old and more discouraged about it. Many seem to find it too difficult, too depressing to imagine themselves as being in the care recipient’s shoes. Their wishes are more about what they do not want to happen to themselves, than what they do want. These are:

• not to be a “burden” to others, especially to their children;
• not to burden themselves or others with unaffordable expenses; and
• not to end up in a nursing home.
Among hopes for their own aging, family caregivers most often cite being able to live in their own homes, maintaining good health and remaining independent for as long as they can.

Yet, ultimately, far too many wish to escape from aging as it now plays out in America: I don’t even want to think about it. I want to pass in my sleep of old age. It’s an ugly time of life—the last few years of suffering. I would rather die in a car wreck than put anyone through what I had to go through taking care of my mother.

This study serves as a call-to-action for much needed change in the work place and healthcare institutions to recognize and address the needs of family caregivers. According to Ellen Gallinsky, President of the Families and Work Institute, “I deeply hope that the voices we share in this study add to the momentum created by so many pioneers in this field and to the brilliant efforts of Maria Shriver in bringing much-needed research and attention to caregiving."