Celebrating the life-saving act of caregiving

With each event, TEDMED draws special attention to caregivers and celebrates the invaluable roles they play in healthcare delivery. In past years, we’ve highlighted somewhat unconventional caregivers, such as the comedic duo Karen Stobbe and Mondy Carter, who draw upon the rules of improvisational acting to inject their caregiving with elements of openness and compassion. Yet again, caregiving is an important focus of the TEDMED stage program and Hive. At TEDMED 2016, we’ll be exploring new models for care delivery, particularly for the elderly, as well as honoring the unique relationships caregivers have with their patients.

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Image courtesy of The New York Times

Like Karen and Mondy, TEDMED 2016 speaker and mental health professional Cheryl Steed takes an unexpected approach to caregiving for people with dementia – but, in this case, what’s particularly unique is that the providers are convicted felons. As a clinical psychologist at the California Men’s Colony in San Luis Obispo, Cheryl leads the Gold Coat Program, through which prisoners are trained to provide support for ailing inmates suffering from cognitive impairments, such as brain injuries, strokes, and Alzheimer’s Disease.

Alzheimer’s Disease has grown to be a pressing public health challenge in the United States, with the population of Americans over 65 expected to nearly double to 84 million between now and 2050. This is especially true in prison populations, where the increasing rates of dementia are a fast-growing and under-reported issue that the majority of prisons are ill-equipped to handle. The Gold Coat Program is an inventive and resourceful effort to provide care for ailing inmates, who are often the most vulnerable members of the prison population. A Gold Coat’s job description is both physically and emotionally taxing, and includes helping inmates with intimate tasks such as showering, going to the bathroom, cleaning their cells, and eating. Yet, perhaps the most important aspect of the Gold Coat’s role is offering companionship to the inmates, through which they develop a trusting and caring bond. The experience is not only life-changing for the ailing inmate, but for their caregiver, as well.

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Image courtesy of Honor

Another unique approach to providing care for the elderly that will be featured at TEDMED 2016 is Honor, an ambitious new effort to modernize in-home care for senior citizens and allow them to live in their own homes with joy, comfort and grace. Currently, the home care industry employs 1.5 million caregivers for senior citizens; yet, finding a caregiver is often a convoluted and inefficient process, and workers are often underpaid, work part-time, or have limited control over their schedules. Through Honor, the process is simplified and caregivers can list their qualifications, skills, and job requirements on an online marketplace, where they will then be matched with elderly patients seeking care. By combining care professionals with smart, easy to use technology, Honor makes it easier for elderly to find the right care at the right time.

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Image courtesy of The American Nurse Project

According to Honor’s co-founder and TEDMED Hive entrepreneur, Sandy Jen, the company is aptly named as its mission is to honor the elderly with dignified care. Similarly, award-winning filmmaker and TEDMED 2016 speaker Carolyn Jones is driven by a mission to honor nurses for the integral role they play in the lives of their patients. As the creator of The American Nurse Project, Carolyn Jones is incredibly passionate about paying tribute to nurses across the country who have pledged their lives to caring for others. For Carolyn, this journey of appreciation was sparked by a close relationship she had with her nurse when undergoing chemotherapy treatment for breast cancer. The American Nurse Project has taken Carolyn across the country, where she’s documented the stories of fearless nurses serving on the frontlines of healthcare.

Together, these remarkable speakers and stories will shed light on new, innovative models of care, while deepening our appreciation for caregivers. At TEDMED 2016, Delegates will have the opportunity to learn more from their inspirational stories and insightful perspectives. We hope you’ll join us there.

Improving the script for caregiving

K&M PhotoboothIn this conversation between two improv actors, Mondy Carter steps into Karen Stobbe’s world and asks for her perspectives on what she thinks living with Alzheimer’s disease is like, and how we can harness the rules of improv to improve our caregiving.  Learn more about Karen and Mondy and watch their TEDMED 2015 talk here.

Mondy: Why do you think being in the moment with someone living with Alzheimer’s is important? I know what I think, but I am interested in how you see it.

Karen: People living with Alzheimer’s are experiencing short term memory loss. When you’re struggling to remember and trying to make sense of the world around you, life becomes very immediate – very  much in the now.  If we stay in the moment with them, it slows us down and brings us more into their world so we can see things from their perspective.

Mondy: That’s how I see your Mom’s experience with Alzheimer’s. You and I walk around with the context of our recent memories, and so the world makes sense to us. But her recent experiences don’t stay with her at all, and that void of information is filled with immediate sensations colored with the only memories that she does have – ones from long ago. Even though we can share the present, I have to be open to her particular present to be in the moment with her.

Karen: Exactly. When you are truly in the moment, you make yourself available to be present for any moment that arrives.

One of the hardest guidelines to follow in improv and Alzheimer’s is listening fully. To really understand a person with Alzheimer’s, I think you have to pretend the other person is the only one in the world as you listen to them. Like I do with you….

Mondy: You do? I must have missed that.

Karen: Perhaps if you listened more fully?

Mondy: Hmmm…sorry, I just got a text!

Karen: Ha. Seriously, though, think about how courageous it is to even try to communicate when you’re struggling to remember, fighting to follow a conversation, or piecing together fragments of memories to make sense of the world. If they are trying that hard, maybe we can try to be more present in our listening. There was actually a study done in nursing homes that showed 92% of the talking was done by those who work there, and only 8% by those who live there. Not a lot of conversations with the residents or listening by the staff is taking place.

Mondy: When I began improv, it was really difficult for me to stop working out my responses while the other players were talking. It’s hard to believe that just letting go of our own ideas allows us to come up with the best ideas. But, when you listen fully and have the other person foremost in your mind, the human brain is perfectly able to come up with what is needed immediately. Wouldn’t you say that listening is the bedrock of improvisation?

Karen: Yes. And isn’t listening something you have to actively practice?

Mondy: I had to, again and again. The “good” thing about doing improv on stage is that, when you don’t follow the guidelines, you fall on your face. There is a tremendous ego incentive to let go of your ego. If you don’t let go and listen, you crash and burn.

Karen: Which is basically what can happen in a caregiving situation.  If you don’t let go and listen, you won’t understand what the person with Alzheimer’s is trying to say. Misinterpreting their intentions or projecting our ideas can lead to frustration on both sides.

Mondy: Is that why so many people think aggression and anger are always a part of Alzheimer’s?

Karen: That’s a common misperception. People think everyone with Alzheimer’s gets to an “aggressive stage” or all “get angry.” That is not true. Most of those so-called behaviors are either their way of trying to communicate, or reactions to our poor behavior. Most of the time, their actions are really very normal for their perceived situation. We just don’t see it that way.

Mondy: Can you give me an example of that situation?

Karen: Imagine that it’s 6:00am and you’re comfortably lying in bed, in your home when… boom! A complete stranger walks in, opens your drapes and says, “Mr. Carter it’s time to get up!” How would you react?

Mondy: I would freak out and throw something at them. Do I have a taser in this hypothetical case?

Karen: Sure, there is a taser…

Mondy: Then I would tase them.

Karen: We do that to people living with Alzheimer’s all the time.

Mondy: We tase them?!

Karen: Ha! Stop it. No, we don’t bother asking them if they even have any desire to get up. We forget to re-introduce ourselves if we’ve been out of the room for a bit. We tell them they are in their room, but then we burst right in and order them around. In that situation, just about anyone would get upset or angry.

Mondy: I see. So that’s why stepping into their world, instead of forcing them to live in ours, is so important.

Karen: Yes – there’s so much we could learn from the basic rules of improv. Stepping into their world, being in the moment, and listening fully – these rules are the foundation of compassionate care for people living with Alzheimer’s.

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Examined Lives: The Wooden Box

By Barry J. Jacobs

On a scorching day at my step-father’s graveside, I stood slightly outside the circle of 20 mourners, present but distant. In my hands, strange to me, was the wooden box.  I wasn’t thinking about its contents of bone cinders and fine ash but of the surprising coolness to the touch of its dark mahogany veneer and polished brass latch.  I listened impassively to my step-sister’s tearful remembrances of her party-boy father and to her cousin’s choked sobs recalling her favorite, most loving uncle. I had promised myself–especially during his decline from dementia–that I wouldn’t speak at his funeral on his behalf. So I stood watching in silence now, holding tight to his box of cremains.

wooden_boxAt the time he married my mother when I was 17, he had little interest in me or use for my impudence. For my part, I hated his sullenness when sober and boisterous prejudices when drunk—so unlike my deceased father. We learned to give each other wide berth, maintaining a tepid cordiality punctuated by infrequent clashes. This worked for over 30 years until he started losing his mind. Because I am my mother’s son and a clinician specializing in treating families dealing with illness, I felt it was my duty to assist my mother with the caregiving. That brought me into greater contact with not only him but many difficult feelings. Like many caregivers before me with a history of bad family relationships, I felt with fresh intensity the old resentment I held for the man I was now committed to helping.

In his last three years, I moved my step-father and mother up from Florida to live in an apartment a mile from me and my family. I went about the enervating business of seeing them several times a week for meals and doctor’s appointments. I visited him (irregularly) after he was placed in a nursing home. To deal with caring for someone I’d long detested, I had to shut off all of my feelings. I had to be rigidly self-contained, keeping up the polished veneer of the grimly resolute caregiver to coolly carry out my joyless caregiving efficiently. On the outside, I myself became a kind of wooden box. Inside, though, I felt empty of purpose and energy at times. I burned with anger, at other times, towards the hostile man he’d been and the vexing burden he’d become.

This was exactly what I always counsel family caregiver clients to strive to prevent—to not lose one’s self during caregiving, to not turn wooden and callous just to keep difficult emotions in check. But it seemed so much easier to completely shut off. What possibility could there be for resolving my past feelings with this vague, addled man in life or death? Yet even as I stood there silently on that July day, I felt a bit chagrined. I was in a responsible enough position at this auspicious moment to closely grip his box. Yet, dreamy in the hot sun, I held myself as far away from the unfolding scene as my psyche would allow.

And then someone suddenly whisked the wooden box from my hands and nestled it into the shallow, open grave. Others cried; I was too shut off to react. As part of the Jewish funeral ritual, a line formed to shovel dirt over the box but I stood there in a daze. I finally snapped to attention when I saw my 17-year-old son grab the long-handled spade. If he could do religious duty for a step-grandfather he hardly knew, so could I. I got into line and went through the motions of helping bury my step-father.

But though his ashes went underground, I didn’t entirely bury him. For too long, I did too good a job of shutting off and not processing what I felt. Six months after his death, I haven’t shaken all the woodenness. Hard as I try to come to terms with my relationship with him and put him to rest and myself at ease, I still find the box sealed. I’ve wound up carrying its weight and burden still. My hands still tightly embrace it.

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Barry J. Jacobs, Psy.D. is a clinical psychologist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. A TEDMED Great Challenges Team Member for The Caregiving Crisis, he is the author of “The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent” (2006, Guilford) and the forthcoming “Caregiving Family Stories & Beliefs,” a collection of 25 of his previously published essays and case stories on families and illness.

This post originally appeared on the Collaborative Family Healthcare Association’s Families & Health Blog.

How “unmentionable” stressors can hurt our health: A live online event this Thursday

By Stacy Lu

Debbi Heffern was too busy caregiving to go for that colonoscopy.

A dietitian and lactation consultant in St. Louis, Missouri, Heffern had been a caregiver for decades; first, for her mother, who died of cancer; and then for her mother-in-law.

“My mother-in-law was determined to live on her own. I made sure we jumped through all the long-term care insurance hoops in the right order, and had to line up paid caregivers. When she took a turn for the worse or needed new equipment I had to be on top of all that. Then her identity got stolen. Untangling that was a nightmare,” Heffern says.

Sure, Heffern had recently turned 50, but she had a healthy life style, except for the stress, and who had time for a colon cancer screening? Unfortunately, she had an ugly surprise when she was tested three years later.

“I ended up with stage four colon cancer, which required multiple surgeries and 32 rounds of chemo. While my employer was very accommodating, recovering from surgeries and all that chemo meant a lot of time away from my own job. If I had gotten my screenings when they had been recommended, I’m told I might have had only stage two or three, and perhaps wouldn’t have needed two of the surgeries or so much additional follow-up chemo,” she says.

Four in 10 adults in the U.S. are caring for an adult or child with significant health issues, up from 30 percent in 2010, according to a recent national survey by Pew Research Center. Given our aging population, that number is almost certain to increase, with employers taking a chunk of the burden, at least financially: A 2011 Gallup study says full-time employee absenteeism due to caregiving duties costs employers some $25 billion annually.

What is less obvious is the hidden impact caregiving has on employee health. Byproductsshutterstock_83284207 of unrelenting stress, such as depression and poor sleep, and a lack of attention to personal health, including nutrition and exercise or — as in Heffern’s case — neglecting preventive care, take a toll. Eliza Corporation of Danvers, Mass., a leader in health engagement management, in partnership with Altarum Institute, developed the Vulnerability Index (VI) to help insurers and employers measure how life issues like caregiving, financial troubles or marital problems impact employee health. The Company says the index has three times the predictive power of self-reported health problems than traditional measures.

According to their research, these vulnerability factors make people much more susceptible to chronic conditions such as mental illness, lower back pain and diabetes. Caregiving shows a particularly strong link; caregiving employees are nearly three times more likely to be highly vulnerable to health issues than non-caregivers. The Pew study also showed that caregivers were more likely to have faced a recent health crisis than non-caregivers.

Tracking a clear relationship can be tough, however, as employees are not likely to bring topics like caregiving — Eliza Corporation calls them “The Unmentionables” — to the fore.

The VI research says people are eager for help; about 80 percent of respondents are willing to accept help from their doctor or health plan on an “Unmentionable” issue like financial stress; that rate jumps to 96 percent of people wanting help from either their doctor, their health plan – or just as importantly, their employer – with their caregiving stress. Just being surveyed brings overwhelmingly positive feedback, says Alexandra Drane, Eliza Corporation’s Founder and Chief Visionary Officer.

“The reason people like it is because they know these life stresses are why they’re not feeling well, but nobody asked them these questions before,” she says.

“There is a lot of counseling for cancer patients available both through our insurance company and where I was treated. But I don’t think anybody ever asked me about the caregiving stress,” Heffern says.

Even those organizations that already have invested in tools like this to address caregiving and other life-context issues often have trouble gaining traction – simply because people don’t know about them.

“For the past few years, Cigna has been refocusing its business on the individual,” said Joan Kennedy, vice president for consumer health engagement for the health services company. “We have invested in resources and experts to help people with coaching services, care management programs, and employee assistance programs. The challenge is that many people just don’t realize these resources are available to them.”

Cigna has a pilot program in collaboration with Eliza, using the Vulnerability Index to reach out to individuals that might help, and then connecting them to the resources best matched to their needs, Kennedy says.

How might the “Unmentionables” affect health? How has using the Index to screen employees worked so far?  Hear more about what Eliza learned from their research in a TEDMED Great Challenges online live event this Thursday at 2 PM ET.  Click here to get started.

The dementia tsunami is headed your way

A Guest Post by Amy Goyer

Anyone who has ever encountered someone who has dementia, much less been involved in the intense care for or a loved one with the wretched disease, has three thoughts that permeate his or her mind:

  • First, pleading: “Please, please don’t let it happen to me…and if it does let there be a cure.“
  • Second, reality: “Who will care for me if I do develop dementia?”
  • Third, fear: “How am I going to amass enough money to pay for my care?”

I was first a caregiver for my grandmother who had dementia and now for my Dad, who lives with Alzheimer’s disease, a common form of dementia. I have these thoughts on a daily basis, and I know I’m not alone: 25 million people are projected to develop dementia by the year 2050 unless we find ways to prevent, treat and cure it.

Who will care for these people? What will be the personal, medical and economic impacts of this surge?

Recently, I participated in a TEDMED Google+ hangout chat about the dementia tsunami headed our way. I was encouraged by the robust discussion of these and other key questions by experts, doctors, researchers, service providers and caregivers. Not because there were answers to all of these questions, but simply because the discussion was taking place.

Those of us who work in the field of aging have been riding our virtual horses through the night shouting, “The boomers are coming! The boomers are coming – and they’re bringing dementia!” for many years. Some in the medical community have also been sounding the alarm. In fact, it’s not only the boomers. By 2050, Gen Xers and even Generation Y will be in dementia range.

Now, by shining a light in the darkness on this critical issue, TEDMED is helping to create the only thing that will really change the course of the dementia tsunami: public demand. We must, as a society, reach that “I’m mad as hell and I’m not putting up with it anymore” stage that creates an overwhelming energetic shift. That shift is what it takes to increase research and treatment options for dementia, as well as affordable care for those who have it and support for those of us who take care of them.

Experts in the Google+ hangout shared their perspectives and some key issues in the chat:

  • About 1 in 8 older Americans have Alzheimer’s disease now (one form of dementia).
  • At this time, some medications and treatments can slow certain types of dementia for some people, but nothing stops it. Nothing. There is no cure.
  • The National Institutes of Health spends only about $500 million a year on dementia research – much less than other diseases.
  • Less than 1% of nurses, physicians assistants and pharmacists are trained in geriatrics, yet 26% of their patients are geriatric. There is a dearth of geriatrician physicians (geriatricians) as well. There are simply not enough medical professionals who are trained in dealing with the diseases of old age (including dementia) and the necessary unique treatments and approaches for this population to meet the demand.
  • Family caregivers are bearing the bulk of the burden of care and will do so increasingly in the future – many without connections to resources and supports that are in place. Caregivers for those with dementia have higher rates of depression and other health problems themselves. More funding for training and supporting family caregivers is needed.
  • More people need to participate in dementia research – but caregivers of those who suffer from it are generally so exhausted and overwhelmed we often can’t get it together to register our loved ones or ourselves to participate in research.

Amy Goyer with her parents.

From my perspective as a primary caregiver for both of my parents who live with me, a full-time worker, and an individual who probably has a strong likelihood of developing dementia myself some day, I could feel horrifically hopeless. What keeps me from falling into the abyss of fear? Taking action. I choose to do something about all of this; I do my part in creating that necessary energetic shift.

I do so personally, by making the necessary sacrifices in my life so that I can ensure my parents are getting the best possible care and by taking a relentless approach to doing my homework, asking questions of their health care professionals, leaving no stone unturned when it comes to possible treatment for dementia and their other illnesses. I also honestly share my own personal caregiving experiences in my blog and other forums. Professionally, I take action by raising awareness and helping other caregivers – in particular through my work with AARP and the Ad Council as a spokesperson for their caregiving campaign. We are working hard to connect caregivers with much needed supports through the AARP Caregiving Resource Center. It’s a big job and it will only get bigger.

Whether you are a doctor, researcher, lawyer, nurse, family caregiver or an individual who doesn’t want to get dementia – do something. Keep the discussion going. It’s better than sitting back and waiting for the flood. In the TEDMED chat, expert leaders and participants all agreed on one thing: we must advocate for those with dementia – they can’t advocate for themselves. I might add that, truth be told, when we advocate for prevention, treatment and a cure for dementia, we are actually advocating for ourselves too. The tsunami is coming, and you never know if you will be in its path.

I look forward to more pointed and hopeful discussion about caregiving and dementia at the TEDMED event in Washington, DC coming up April 16-19.

Follow Amy @amygoyer and on Facebook.

 

 

Examined Lives: A young caregiver helps three generations

By Stacy Lu

This is the first of a series exploring the impact of the Great Challenges through storytelling.

At least five days a week for the past four and a half years, 17-year-old Jimmy Braat has been traveling two miles to the home of his 73-year-old grandmother in Lake Worth, Fla. Along with his mother, Debbie, he usually stays a few hours, doing household chores, helping to change the wrappings on his grandmother’s legs that prevent swelling from lymphedema, giving her medicine.

Then, he and Debbie may take her grocery shopping. At least once a week he also accompanies her on one of her many doctor visits – to the endocrinologist, podiatrist, pulmonologist, cardiologist, or sleep specialist – lifting the wheelchair that’s too heavy for his mom to manage.

His “Grandma Del” suffers from a range of ailments that limit her mobility, including diabetes, neuropathy, and pulmonary hypertension. Jimmy’s dad passed away in 2008 from heart failure. Debbie, 52, has pulmonary hypertension and is easily winded. His family can’t afford private care, Del does not qualify for Medicaid, and Medicare covers home care only for limited situations and periods of time.

Del refuses to go to a nursing home and doesn’t want to move in with Debbie. So much of the work caring for her has fallen to Jimmy, who is an only child.

“He doesn’t mind.  He never complains,” Del says.  “I took care of him when he was a baby, and now he takes care of me.”

Jimmy is one of more than a million children providing some or all care for ill family members or special needs siblings. According to a survey by the National Alliance for Caregiving and the United Hospital Fund in 2005, at least 1.3 million children ages 8 to 18 help care for a sick or disabled relative, with 72 percent of these caring for a parent or grandparents.

A Growing Problem, Yet Largely Hidden

There are no recent national studies, though as many as several million youths could be caregivers now, says Connie Siskowski, Ph.D., president of the American Association of Caregiving Youth (AACY), an advocacy and resource organization. Demographics may be pushing more children into the role: People are living longer with chronic illness, and single-parent or multi-family households are increasingly common, as are grandparents raising grandchildren.

While adult caregiving has gotten more awareness, the issue of a child helping is less known, says Suzanne Mintz, co-founder and CEO emeritus of The National Family Caregivers Association.

Jimmy Braat

“It’s always been assumed that family cares for family, and that, of course, is true. But in the modern age when medical science performs miracles that help people live so much longer, it’s not just kids helping dad or helping grandma, it’s them actually doing medical procedures.  And it’s not just for a couple of months, it’s for years and years,” she says.

A Born Helper

Jimmy’s caregiving journey began at the age of nine, when he began helping to care for his great grandmother, who suffered from dementia. He brought her newspapers, ground her pills into applesauce, and warmed meals in the microwave. She passed away when he was 13.

“He’s always been such a sweet little boy,” says Debbie Braat. “When he was real little, around six years old, I had to have surgery on my feet — one foot one year, one foot the other year. When I had the surgery I couldn’t walk around at all, but he would get up and he would do the laundry. He couldn’t even reach the washing machine, but he would pull himself up and sit on the machine.”

Of his grandmother, of whom he has always been close, Jimmy says, “She’s a difficult person. It’s not really her illness. She’s got a one-track mind. My trick is, when me and her start to argue, I just put my headphones on.”

Still, he says, ” I had a period of time when my grandmother was in the hospital for a few months and on life support for two of those months. The hardest thing for me was seeing her on life support for the first time.”

Jimmy is about three years behind in high school, he says; according to a 2006 report sponsored by the Bill & Melinda Gates Foundation, some 22 percent of high school dropouts surveyed left to take care of a family member. Now he takes high school classes through an online course offered by Palm Beach County. He is often so tired that, he says, “I end up passing out in at least one of my classes each day.” He also suffers from depression; research suggests caregiving raises the risk for depression and anxiety in child caregivers.

When he does have free time, Jimmy joins activities like camping, cooking classes and dinners sponsored by The Caregiving Youth Project in Palm Beach County, Fla., a pilot program that offers kids ages 10 and up who help family members care instruction, tutoring, home visits and activities. Though the AACY hopes to start a national network, to date it’s the only support program of its kind.

Jimmy will care for his grandmother, he says, “Up until the point where she passes away. There’s no exit strategy. Besides, there’s no one else to do it. “

For more on the issue of caregiving, see the TEDMED Great Challenges web site.

Great Challenges: Experts discuss the Caregiving Crisis

Missed yesterday’s enlightening discussion by TEDMED Great Challenge experts on the caregiving crisis? Watch it here to get caught up on the latest thinking in the field.  Along with the TEDMED community online, the Caregiving Challenge Team talked of assessing the current and future numbers of caregivers, factors contributing to the Challenge, and family, healthcare, business and government interventions that have the potential to help patients and their caregivers.

Tune in to the TEDMED Google+ page or on TEDMED.com next Thursday at 2 pm EST for the next in our series of live online events, and follow us for updates @TEDMED #greatchallenges and on TEDMED’s Facebook page.

Join Thursday’s live conversation on the caregiving crisis

This Thursday, TEDMED is hosting the second live Great Challenges TEDMED Google hangout.  This weeks topic:  The caregiver crisis.

Join our caregiving Challenge Team leaders on Thursday at 2 PM ET. They are:

Peter Arno, PhD – Director, Center for Long Term Care Research & Policy, School of Health Science at Practice New York Medical College

Alan Blaustein – Founder, CarePlanners

Barry Jacobs, PsyD – Director of Behavioral Sciences, Crozer-Keystone Family Medicine Residency Program

Cheri Lattimer, RN, BSN – President & CEO, CMI; Executive Director, Case Management Society of America & National Transitions of Care Coalition

Carol Levine – Director, Families and Health Care Project, United Hospital Fund

Suzanne Geffen Mintz – CEO Emeritus and Co-founder, National Family Caregivers Association

Click here to Follow our Google+ page and to post questions in advance — we’ll be choosing a few to answer on-air.

If you weren’t able to make last week’s conversation on the changing role of the patient, you can watch it here.  See you Thursday!

A Great Challenge conversation: Who can help when caring becomes a crisis?

How can caring for those closest to us become too much to handle?

The team of experts behind the Great Challenge of the caregiving crisis answered as part of an ongoing online discussion of the issue: Americans are living longer, yet have more chronic illness — and our population is aging. Families are smaller. Healthcare is poorly coordinated. Most jobs don’t allow flexible schedules. And caregiving is unforgivingly stressful for the 45 million or so who have this responsibility.

We know this, and yet caregiving demands still take most families by surprise; they find they are drastically underprepared financially and emotionally to take on this role. Perhaps caregiving will someday become standard family planning, but in the meantime, can institutions step in to assist?

Barry Jacobs, Director of Behavioral Sciences, Crozer-Keystone Family Medicine Residency Program, said that many Fortune 500 companies are allowing flexible schedules for employee caregivers, though it’s more difficult for smaller companies to follow suit.  Carol Levine, Director of the Families and Health Care Project, United Hospital Fund, said this reduces turnover, improves productivity thus pays off in the long run.

In most cases, a caregiver is an intrinsic part of a patient’s medical team, and should be recognized as such by healthcare professions, says Suzanne Geffen Mintz, CEO Emeritus and Co-founder, National Family Caregivers Association. They should be coached appropriately for in-home care, and their assistance and input should be utilized. Mintz says:

“There are only two people consistent across all care settings: patients and their primary family caregiver. This simple statement has a major impact on the safety and coordination of a patient’s care. Doctors would do well to remember this and include family caregivers as lay members of the healthcare team.”

And while there are family leave laws and tax credits on the books to help caregivers, says Peter Arno, Director of the Center for Long Term Care Research & Policy at the School of Health Sciences and Practice, New York Medical College, many may not be aware of and hence don’t take advantage of them.

Click here to read more about the caregiving crisis, see responses from experts, and add your own comments.

How can we better support caregivers?

An estimated 44 million people provide full-time or part-time care for the elderly,disabled veterans, new mothers, the injured, the sick — a problem that eventually impacts everyone in the nation.

Caregivers have few tools, few support systems and receive minimal, if any, training for these responsibilities. What innovations can we develop specifically to support the caregiver community?

Ask a collected team of leaders on the issue — from a caregiver to a psychologist — about how we can better manage the crisis, at challenges.tedmed.com.