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More male caregivers emerge as demographics shift

As millions of baby boomers enter retirement and as medical technology allows seniors to live longer than ever, more men are becoming caregivers for their loved ones, upending stigmas that caregiving is the work of women. As a 2012 Pew Research analysis on family caregiving shows, 45 percent of U.S. caregivers are now men.

Couple by George Hodan
Couple by George Hodan

The increase has been swift and substantial. Just about fifteen years ago, only some 19 percent of those looking after older or disabled family members were men, according to ABC News and the National Alliance for Caregiving.

“[I]ncreasingly men are being thrust into (or welcoming) the role of caregiver- for their children and/or aging parents- while working full-time jobs,” writes caregiving expert Alexis Abramson for The Huffington Post.

Cultural changes about what constitutes masculine and feminine work also seem to be contributing to the rise in male caregivers.

According to analysis from Leann Reynolds, a contributor to the Good Men Project, “Such an increase in the proportion of male caregivers can be explained by a combination of social and demographic changes,” such as the greater geographic separation of family members, smaller families and shifting gender roles.

As Richard Nix, executive vice president of Aging Care, told ABC News, ”It’s OK for men to cry now.”

Workplace discrimination

Still, some male caregivers face discrimination from the workplace for their time spent caregiving. According to Abramson, male caregivers may “unfortunately face a tougher time than women from employers who are used to caregivers being, well, women!”

She writes how male caregivers are more likely to be victims of “caregiver stigma,” as caregiving is associated with feminine traits, that she insists, are not yet valued in the workplace. ”Sadly a man who requests time off to take his elderly mother to a doctor’s appointment might just as well be announcing plans to attend a retreat ‘to get in touch with his feminine side,’ ” Abramson writes.

Similarly, Fortune and CNN Money report that the growing number of men taking on caregiving roles has contributed to the overall spike in employee discrimination claims, analysis confirmed by the Equal Employment Opportunity Commission.

“Employers are often more relaxed in applying blatant sexual discrimination against male caregivers,” Elizabeth Grossman, an attorney in the EEOC New York district, told Fortune. “When invoking parental leave, some supervisors might say ‘Oh no, that’s for women.’ There are some pretty entrenched stereotypes.”

The Center for WorkLife Law reports how one man was told by supervisors he would be “cutting his own throat” if he took time off to care for his sick father.

From 2006 to 2010, 147 family responsibility discrimination cases brought by male plaintiffs were decided in court, according to data from WorkLife. Fortune estimates this data reflects a 300 percent increase compared to the number of such decisions from 2001 to 2005.

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Dying at home may be more difficult than expected

Extensive planning is necessary for those determined to help their loved ones die peacefully at home, health care reporter Susan Seliger writes for The New York Times’ blog on aging. Most Americans say they want to die say “at home” when asked,  but both the patient and caregiver’s well being must be considered.

Investing in the right equipment and preparing documents may overwhelm some caregivers, and although professional help is available, each patient’s circumstances are different.  Seliger has prepared a list of 12 tips to help them fulfill their final wishes.

Perhaps the most important consideration is making room for the bed. “A lot of people put the patient in a family room where there is more space, or the dining room if it’s closer to a bathroom,” said Dr. Stacie K. Levine, a geriatrician and palliative care physician at the University of Chicago. She also recommends putting the bed on the first floor of the home to prevent strenuous movements.

The pros and cons of using a hospital bed, Seliger says, should be carefully considered due to the emotional impact that sleeping apart from a spouse can bring. She advises patients with dementia or  cancer who are not that mobile to choose a bed with an air compression mattress in order to to prevent bedsores.

Other suggestions are simple comfort adjustments, such as cushioning the patient’s favorite chair or buying earphones for the hearing impaired. Spring pressure adjustable curtains provide privacy.

Caregivers may also make use of hospice during the last stages of care. “A good hospice team not only helps the caregiver figure out a plan for care but arranges for Medicare approval and payment,” Seliger writes.

“The larger the hospice, usually the more services for the patient and caregiver,” said Dr. R. Sean Morrison, director of the National Palliative Care Research Center at the Mount Sinai School of Medicine. ”Ask for their daily patient census – several hundred patients per day is a good size.”

“What I see that prevents people from being able to stay at home [to die] is not their medical needs but the needs of their caregiver — can the caregiver really help, are there resources to help, or is that person going to be overwhelmed?” Morrison told Seliger.

“Respite care” for the caregiver may help with overwhelming stress. Respite care pays for up to five days of patient care in a nearby medical facility so the caregiver can take a break or even go on a vacation, said Lori Mulligan, senior director of development marketing and community services at Gilchrist Hospice.

Still, hospice care remains underutilized. As LMM previously reported, 36 percent of hospice patients die or are discharged within seven days of treatment.  Many others suffer more than they need to due to hospice enrollment policies. Hospice is most often used when curative treatment is no longer effective, and a terminal patient is expected to live about six months or less.

Despite the work, home deaths may be less traumatic than hospital deaths, according to a 2010 study published in the Journal of Clinical Oncology. Some 300 adults with terminal cancer and the same number of caregivers were studied. Among the caregivers, those whose loved ones did not die at home were about five times more likely to have post-traumatic stress disorder after six months than those whose loved ones died at home.

Learn more about dying at home from WebMD.

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The stresses of caring for an aged parent

As more than 76 million baby boomers approach retirement age, some have had to become caregivers for parents and sidestep vacation and retirement plans. Advances in medical technology have allowed the elderly to live longer than ever, so now many boomers must adjust.

According to data from the National Alliance for Caregiving, some 66 million Americans are unpaid family caregivers. Two-thirds of those caregivers are female, and most are around 48-years-old. Fourteen percent simultaneously care for their own child.

In 2009, AARP estimated the economic value of their unpaid contributions was approximately $450 billion, as many provide care for more than 40 hours a week.

Rerouted lives

CNN recently published a feature on adults with rerouted lives due to caregiving responsibilities. Karen Jones, 61, a retiree from Virginia Beach, Virginia, is one such individual. ”I never thought I would be doing this,” Jones said. She takes care of her parents, both in their 90s, who live down the street.

“Travel plans now include very expensive trip insurance so I can rush back to take care of them,” she said. “An extended trip to Scotland to visit my husband’s relatives has been put off twice because it’s hard to leave my parents for a month at a time.”

She has no siblings nearby and has had a strained relationship with her parents. Jones said she’s cleaning up her karma and “putting old hurts to right.”

Megan K. McAvoy explained in a new article for The Huffington Post that caring for parents is “a labor of love,” because women must carve out time between getting kids to sports practice, succeeding career-wise and putting dinner on the table.

Some women experience loneliness and isolation caused by the emotions involved in caring for a parent. Seeing a parent ingest high doses of medications, making decisions with siblings, working and financial costs take a serious toll on the caregiver.

According to McAvoy: “The compound physical and emotional impact of caregiving over a lifetime results in a large percentage of women who need care themselves. Yet, nearly half of women ages 75 or older are living alone, compared to less than one-quarter of men. The challenge becomes finding the resources to get care for yourself after you have given it for so long.”

McAvoy, a financial representative, advises families to have early conversations about caregiving and long-term care insurance, although such insurance won’t replace loved ones.

So why do so many children choose to become caregivers? Ellen Breslau, editor-in-chief and senior vice president of Grandparents.com, insists that many children take upon the caregiving role because it offers peace of mind. ”They will naturally feel more comfortable with you than with non-family members, which can impact the caregiving and their well-being.”

“It is also a time to give back to your parents in a way that is unique,” she told CNN. “They raised you and cared for you, and now the cycle has come full circle to a point where you can do the same for them.”

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TEDMED takes on caregiving

The stress and strife many caregivers face was the topic of  TEDMED’s latest Great Challenge series. The streaming video featured health care professionals who pondered what should be done to manage end of life care options and address caregiver needs.

There are 44 million full and part-time caregivers in the U.S. responding to an aging baby boomer population that the health care system isn’t equipped to handle. Costs continue to rise, and in 2010, Medicare paid $55 billion for doctor and hospital bills during the last two months of patients’ lives.

“We all know what the issues we’re dealing with are: the aging population, the health care system not being in a position to take care of everyone, people getting busier and living further away from other family members and a real need for better coordination of care in the marketplace.” said Alan Blaustein, the founder of CarePlanners, an organization which provides educational support to members. “The real issue at hand is that there’s nobody in the system who’s in any position to properly care-give or coordinate care for any member of your family,” so the responsibilities rely on family.

Education was a common theme throughout the discussion directed at both medical students and family caregivers. Blaustein insists students learn about caregiving, even though hospital settings don’t allow time for much talk with those managing the care.

Cheri Lattimer, director of the National Transitions of Care Coalition, offered practical wisdom for those just beginning the implementation of educational support programs for those caring for family.

Lattimer proposed that health professionals talk with “health literacy” to those looking for education and just starting to care for those with dementia. “We are talking in the health literacy that patients and consumers can understand. As providers of care we often go into medical terminology which can be difficult to understand.”

She also recommends educational programs with multiple individuals who are dealing with similar struggles- so they can talk to each other.

More and more young people are now taking on caregiving roles. “There are far more children who provide caregiving than we know. It has an impact on them, their schoolwork and their own emotional situations,” said Suzanne Geffen Mintz, the co-founder of the National Family Caregivers Association.

“Other countries have recognized this problem and developed youth-centered programs that allows kids to be kids. There is vast experience elsewhere that could be adapted here,” said Carol Levine, director of the Families and Health Care Project. Young adults, 18 to 25-years-old, are also overlooked and increasingly involved in family caregiving, she said. There is diversity in family caregiving, and varied caregivers have varied needs.

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Addressing the needs of ethnically diverse caregivers

Addressing the needs of racially and ethnically diverse family caregivers can help reduce the number of unnecessary hospitalizations and improve transitions between care settings, according to new findings by AARP. Researchers Susan C. Reinhard and Rita Choula analyzed qualitative data on Hispanic and African American caregivers in Meeting the Needs of Diverse Family Caregivers.

According to the AARP Public Policy Institute, one in ten caregivers in the U.S. in 2009 were Hispanic, and 11 percent were African American.

An African American male family caregiver said he was not taken seriously in the hospital because he was dressed in jeans and a baseball cap—like he was from the ‘hood.’

Hispanics told researchers that they always knew they would end up as family caregivers- a cultural tradition. “A number of Hispanic family caregivers said they started caregiving when they were very young. Many, particularly female caregivers, have had years of experience caring for their grandparents, parents, aunts, and uncles,” researchers write. Experience, however, does not make their job any easier, especially when many of the younger family caregivers work and have children of their own.

Language continues to be a barrier to effective communication in hospitals between caregivers and doctors. The researchers note, “In many instances the health care professional delegated responsibility for translating to the family caregiver, who might not have a good understanding of the information being translated in the first place.”

African American caregivers complained of feeling invisible in hospital settings. “Many felt ignored by the hospital staff. Some said doctors, nurses, and social workers often left them out of discussions about their family members, and it was sometimes difficult to get their questions answered,” the researchers write. It is imperative that caregivers remain informed in order to relate information to patients, who are often confused.

The lack of caregiver training can also harm their patients. “For example, family caregivers said they often did not receive sufficient training in administering injections,” the researchers found. “They also reported that they were not formally trained in other areas, such as how to move their family member from the bed to the bathroom, how to change an adult diaper, or how to get the care recipient to walk.”

The study also discovered that racial stereotyping in hospitals arose with disturbing frequency. Sometimes, African American caregivers felt like they had to prove themselves to doctors and hospital staff. “An African American male family caregiver said he was not taken seriously in the hospital because he was dressed in jeans and a baseball cap—”like he was from the ‘hood,’ ” according to the report.

The study also found that as part of the “new normal,” caregivers provide unpaid contributions of more than 450 billion dollars annually. “Family caregivers are assuming ever- increasing responsibilities for managing health care at a time when the older adult population in the United States is becoming more racially and ethnically diverse,” the researchers write. These responsibilities can include social work, nursing care, and some caregivers even act as patient navigators in hospital settings.

Many caregivers reported feeling unappreciated and ignored. “Despite deep personal and economic investments in the care of their family members, family caregivers report that they seem largely invisible to those who might be able to help them feel more respected and confident in providing care” the researchers write. “And, they say, rarely does anyone ask them how they are doing, what their needs are, and how those needs might be addressed.”

Similarly, The American Psychological Association found that ”Factors such as socio-economic status, familial interdependence, level of acculturation, immigration status, and fear of stigma in response to a disease or physical disability may influence minority group members’ experiences of caregiving.” The association concludes that healthcare professionals need to consider these differences.

Healthcare professionals must work to eliminate any tendency towards racial stereotyping, the APA writes, because stereotypes can lead to errors in judgment about minority groups.

“[B]ecause families of color are often stereotyped as being close-knit and supportive of their kin, social service agencies may not take the time to assess the actual needs of this population. This assumption may lead to less allocation of resources, manpower, and finances for outreach to those communities, which in turn, may help to perpetuate the misconception that they underutilize social services because they are taken care of by their own families,” the APA writes.

AARP researchers maintain that minority caregivers want to learn and will take advantage of available aid. “These family caregivers say they want resources to help them better care for their family members, not someone else to perform the tasks for them. They want more knowledge and confidence, and backup if they need more training and information,” they report concludes. They recommend a 24-hour hotline for caregiving support and training sessions to help family caregivers deliver better care.

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