Life Matters Media Participates In “Great Challenges”: Caregiver Crises

Life Matters Media Participates In “Great Challenges”: Caregiver Crises

Posted on Monday, April 22nd, 2013 at 3:17 pm by Life Matters Media

Life Matters Media is proud to participate in the TEDMED “Great Challenges” program, sponsored by the Robert Wood Johnson Foundation. The caregiver crisis has been designated as one of the twenty “Great Challenges” in health and medicine. The program’s mission is not to solve the caregiver crisis, but to provide unbiased, inclusive viewpoints of the challenges from a multidisciplinary perspective.

At the conclusion of TEDMED 2013, Life Matters Media was pleased to take part in “Great Challenges Day,” held at George Washington University, in which participants explored how storytelling and narrative framework can be used to gain a deeper understanding of the caregiver crisis. Storytelling is at the core of what our organization aims to do as we prepare to launch our full digital platform in the coming weeks, and the “Great Challenges” program shares our belief that greater understanding in health care and decision making stem from sharing true narratives- not data.

Below is the “Discovery Doodle” by graphic recorder Robbie Short, depicting some of the challenges offered by program participants in coming to grips with the caregiver crisis.

"Discovery Doodle"

“Discovery Doodle”

An estimated 44 million people provide care for the elderly, disabled, sick and injured. Caregivers have few tools and few support systems as they carry out their tasks, and they receive minimal, if any, training for these responsibilities.

Here are some of the contributing factors that make the caregiver crisis such a pervasive health and social problem, as offered by “Great Challenges” team members:

-Lack of recognition by payers, providers, employers and regulatory agencies on the value and financial impact family caregivers bring the health care system. (Cheri Lattimer, Consulting Management Innovators)

-Emotional isolation and lack of support (paid and unpaid) to help a family caregiver balance his or her life. (Suzanne Geffen Mintz, National Family Caregivers Association)

-The graying of the U.S. – 10,000 Americans turn 65 every day (Alan Blaustein, CarePlanners)


The Stresses Of Caring For A Parent

Posted on Thursday, January 3rd, 2013 at 3:21 pm by Life Matters Media

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.”


TEDMED Takes On Caregiving

Posted on Sunday, December 2nd, 2012 at 6:41 pm by Life Matters Media

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.


Addressing The Needs Of Ethnically Diverse Caregivers

Posted on Friday, September 28th, 2012 at 4:50 pm by Life Matters Media

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.