Lost in today’s healthcare headlines about social determinants of health, such as housing, transportation and food insecurity, is greater attention to the original social context of most of our health habits—family. Insurers and health systems are turning toward engaging patients’ family caregivers as another means of decreasing healthcare costs.

It has been a slow turn, to be sure. Despite decades of family systems thinking and clinical approaches, healthcare remains predominantly patient-centric in its policies, practices and research. But the need to reduce hospital readmissions and institutionalization rates are beginning to prod large systems to create more robust family caregiver support programs, especially in geriatric, home medicine, dementia, hospice and palliative care. The logic behind these moves would seem indisputable, given America’s aging population and higher incidence of chronic and serious illnesses and functional deficits. By bolstering the know-how and resilience of family caregivers, insurers and health systems are hoping older adults’ illnesses and disabilities will be better managed at home and therefore require less intensive and expensive services.

Many of these efforts seem to incorporate principles derived from evidence-based dementia caregiver support programs, such as REACH-II and the New York University Caregiver Intervention, during the past 30 years:

A patient- and family-centered care philosophy: There is recognition that spouses and other family members play key roles in communicating with healthcare professionals, picking up medications, buying and cooking healthy foods, and overseeing treatment plans as they are implemented in the real lives of patients in their home settings.

Formal and structured family caregiver support programs: Much of what passes for family intervention in healthcare is still informal and reactive: Physicians or nurses express concern about a troubled or difficult family member and then social workers scramble to make brief interventions. In contrast, the new family caregiver support programs strive to explicitly engage the patients’ family members early on as a normal part of comprehensive care. They use family caregiver navigators—distinct from patient care coordinators—who focus solely on caregiver needs for guidance, support, education and, in some instances, emotional counseling.

Formal and timely caregiver assessment: Like with traditional healthcare, these new programs ask about who’s in the family and solicit questions about the patients’ medical conditions and treatments. But they go beyond that, evaluating family members’ knowledge, abilities and willingness to participate in care, in addition to their degree of emotional distress with instruments such as the Zarit Caregiver Burden Scale, the Benjamin Rose Institute Caregiver Strain Instrument, and the American Medical Association Caregiver Self-Assessment Questionnaire.

Linkage to community-based organizations: To address all social determinants of health, healthcare and social services agencies need to more closely coordinate their helping efforts. For a more family-engaged healthcare, that means hospitals and outpatient clinics make earlier referrals with close follow-up to local Area Agencies on Aging and local chapters of disease-specific organizations such as the Alzheimer’s Association.

So who are the national players in this emerging trend?

» Twenty-six states now have contracted with managed care companies (e.g., United Healthcare and AmeriHealth Caritas) to manage the healthcare services for their Medicaid recipients. That includes so-called “dual eligibles” (older and disabled patients with Medicare and Medicaid) who are receiving Medicaid Long-Term Services and Supports (home- and community-based services and nursing facilities). To hold down costs, some of these managed care insurers have been experimenting with various means of better supporting family caregivers in order to forestall or prevent patients’ hospitalizations and placements in institutions. A November 2017 AARP Public Policy Institute report (see link below) describes some of these innovations, including increased caregiver engagement, assessment, respite and instruction.

» Dementia–unrelenting and without current medical cure—is the costliest of all American diseases despite the fact that over 70% of dementia patients are primarily cared for by unpaid family members. If these family members falter because of the rigors of dementia caregiving, then patients quickly wind up in emergency rooms, hospitals and skilled nursing facilities. It’s no surprise then that dementia caregivers are the target for many enhanced family engagement endeavors. Baylor Scott & White in Texas ran a pilot study that created individual care plans with caregiver supports, including a $750 month stipend for home care services. The results were improved overall functioning and decreased ER and hospital use for both the dementia patients and their family caregivers. Similarly, Alzheimer’s Greater Los Angeles helped create the Dementia Cal MediConnect program for dual eligibles which aims for better detection of patients with dementia, better working relationships between health systems and family caregivers, and better partnerships with dementia-specific community-based organizations.

» Geriatric/palliative medicine and family caregiving go hand in hand. WellMed, a large network of ambulatory facilities in Texas and Florida for Medicare subscribers, has caregiver specialists that reach out to family members at the time patients are admitted to its palliative care program. It offers them home visits, a telephonic support and education group, and an 8-session stress management program that has been found to lower caregiver burden and depression.

» At Dignity Health Central Coast in California, the family caregiver navigator makes an initial home visit to bring a caregiver gift basket and conduct a caregiver assessment before offering a range of services, including care coordination, a stress management program, and referrals to community agencies. She collaborates with promotores or community health workers to provide the caregivers with increased logistical and emotional support. The results: Decreased caregiver depression and reduced patient ER and hospital utilization.

These fledgling programs are noteworthy but rare. Other health systems have yet to follow suit. While Medicare ACOs have proliferated in recent years, few have implemented enhanced family engagement. And even with the existing programs mentioned above, few are employing providers with family systems training, such as medical family therapists.

But as long as America continues aging and value-based care spreads, family caregivers will inevitably play a larger role. It will be no longer adequate for clinicians to marginalize families or take their efforts for granted. The standard of care will require more of everything–education, support, guidance and, most of all, a spirit of partnership.

Barry J. Jacobs, Psy.D. is the author of The Emotional Survival Guide for Caregivers (Guilford, 2006), co-author of AARP Meditations for Caregivers (Da Capo, 2016), and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. In August, he will leave family medicine after nearly 24 years to become a healthcare consultant for Health Management Associates.

» AARP Public Policy Institute, “Emerging Innovations In Managed Long-Term Services and Supports for Family Caregivers”
» Cherry, D et al (2017). Dementia Cal MediConnect: Creating Partnerships Between Health Plans and Alzheimer’s Organizations in Improve Care in the Dual Eligibles Pilot. Public Policy and Aging Report, 27(S1): S12-17
» Stevens, AB & Thorud, JL (2016). The Symbiosis of Population Health and Family Caregiving Drives Effective Programs that Support Patients and Families, Generations, 39(4): 34-38

By Carol Zernial
WellMed Charitable Foundation Executive Director

The hospital. On the scale of caregiver heavy lifting, a hospital visit of any kind requires all hands on deck. Two weeks ago, I was meeting with hospitals who are trying to create robust programs helping family caregivers. This past week, I had two hospital visits among my family members for some first-hand experience. It’s probably not a surprise to find out these experiences went from very good to very not so great.

I came away from my meeting with the hospitals — who were working on identifying caregivers and ensuring they were empowered as part of the care team — feeling overwhelmingly positive. I was impressed to learn that some family caregivers were given official badges, employee discounts in the cafeteria, included in the care team meetings, and trained to get fresh blankets and water for their loved ones. It is indeed heartening to know that some hospitals are taking the Caregiver Advise, Record, Enable (CARE) Act seriously. They are identifying the caregivers involved and ensuring they have the information they need before the loved one is discharged. Family caregivers can help make the hospital stay, and transition to home or rehabilitation facility more successful when they understand what needs to happen, as well as accept their role.

Within a week of returning home, I got to put hospitals to the test on my own. When the first of my family members went to the hospital, it was a scheduled procedure. While I received only cursory attention from the physicians providing care, one of them did come back to the waiting room when he missed me to ensure I got a first-hand report, an extra effort I appreciated. The receptionist in the waiting room was lovely – getting up from her desk when things slowed down to check in with each family sitting in the chairs. She provided coffee, directions and comfort. The nurse in recovery was very helpful and happy to include me in the recovery process. Score one for the hospitals.

The second hospital involved one of my older family members in another state. This was not a positive experience at all. In fact, no one called to tell us, his closest relatives, that he was even in the hospital. He lay there completely alone for five days of tests and was returned back to the nursing home when they couldn’t find anything – too weak now to even get out of bed. He told us that he wanted to call us, but he couldn’t reach the phone from his bed. Heartbreaking. He may have been too frail or confused to ask, so why didn’t anyone ask him about his family. Just because he lives in a nursing home doesn’t mean that family members are not involved.

No score for this hospital and take extra points away from the nursing home who never called either.

I guess the final tally for the relationship between family caregivers and hospitals is somewhere between trying to get better and couldn’t get much worse. It certainly seems like one family member got better care because I was there, and the other left to decline because no one was there as his advocate.

My take away is that good care is a deliberate process for both family members and medical staff. I’m less concerned if the rationale to improve is monetary, regulatory, customer service oriented, or common sense. I applaud all efforts to support family caregivers in hospitals and across the health care system.

WellMed Charitable Foundation Executive Director Carol Zernial is a noted gerontologist, radio show host, and immediate past Chair of the National Council on Aging. The non-profit WellMed Charitable Foundation focuses on complimentary programs impacting seniors and family caregivers, including weekly telephone learning sessions, evidence-based classes on stress reduction and more. Find out more at CaregiverSOS.org or toll-free at 1-866-390-6491.

By Jamie Huysman

Learning is a lifelong process; at least it is to me. I can’t imagine living in a static world without being able to adapt to the ever-changing circumstances of “life on life’s terms.” To me, the well-known adage, “Nothing is certain but death and taxes,” missed the mark. Change is certain; it is the touchstone of living a full and productive life.

Can you imagine being stuck in one place in time with your understanding set in stone? It is the fear of change that has always caused controversy and discord among the people in this world.

It is also important to discern “order” from “control.” It’s good to have “quality controls,” but when control becomes a power one can wield at will, it can be very destructive to growth.

Albert Einstein said, “The world as we have created it is a process of our thinking. It cannot be changed without changing our thinking.”

As a medical professional I was taught the value of staying connected with my colleagues to exchange ideas and learn from each other. As a man, I am grateful for the connection I have with friends and family. My life would not be complete without them.

Connection, Curiosity, and Committing to Change

These 3 C’s are vital to maintaining a balance between our being and doing.

1. Don’t be afraid to connect with other caregivers through support groups – online or face-to-face. Connectedness keeps us human.

2. Stay curious. Attend or listen to learning sessions, seminars, podcasts that will help you be a better caregiver. Developing outside interests is a motivator of learning. The point is to learn something new from which you can expand your horizons.

3 Commit to change. Is there something you might do differently to make your caregiving experience for yourself or your loved one better? New insights lead to new thinking that leads to different behavior and results.

I am certain that when we learn to apply self-care protocols using these 3 C’s, we will be actively learning more about ourselves. Self-awareness counters naiveté, which can lead to transformation and, finally, understanding.

“It is not that I’m so smart. But I stay with the questions much longer,” Einstein said.

I came across a fascinating article titled, “4 Reasons Why We Should Never Stop Learning,” in Inc. Magazine recently. I highly recommend it!

Dr. Jamie is a popular presenter on Caregiver Burnout and Compassion Fatigue. He co-authored the acclaimed “Take Your Oxygen First: Protecting Your Health & Happiness While Caring for a Loved One with Memory Loss” and was featured in “The 100 Mile Walk: A Father and Son on a Quest to Find the Essence of Leadership, Voices of Caregiving and Voices of Alcoholism.” Dr. Huysman writes for Caregiver SOS, Connections, JoanLunden.com and blogs on PsychologyToday.com.

“Nothing is permanent in this world, not even our troubles.” — Charlie Chaplin

Physicians, and emergency, surgical and hospital staffs, are trained to work under pressure. Many thrive on “red alert” and “code blue” emergency situations. They train to exhibit grace and cool heads under pressure because they know that the emergency will come to an end and they can disengage from being on high alert and the immediacy of the moment. For family caregivers, this is not the case.

Family caregivers are many times on their own, navigating rough and uncharted waters as both captain and crew. Although caregiver training was authorized through the Affordable Care Act, many hospital providers did not meet their obligations and implement these much-needed programs. Caregivers were once again left without a lifeboat by not being trained to perform basic medical procedures to boost their confidence and effectiveness.

When we experience extended levels of stress in multiple aspects of our lives, our ability to be present and efficient in everyday situations is at risk. There are warning signs that we need to be mindful of to prevent long term circumstantial and/or clinical effects related to stress.

Are any of the following familiar to you?

1. I am bored and sometimes resentful about being a caregiver and have little to no patience to listen to my loved one’s concerns.  

2. I discourage conversation by asking unengaging questions and replying with yes or no answers.

3. I am falling behind and have little interest in fulfilling my responsibilities.

4. I am losing or have lost my sense of humor.

5. I feel tired most of the time.

6. I dread going to work and/or coming home more than usual.  

7. I haven’t had any fun for a while now.

8. I feel stuck and tend to avoid others, and increasingly spend more of my free time (like I have any) alone.

9. I ignore what I know would make me feel better and make excuses to not take care of myself.

If you can relate to three or more of the above statements, you might want to consider making some adjustments to your attitude and activities. Wouldn’t you suggest the same to a friend?

It’s unrealistic to think that a work/life balance can be achieved without some tipping of the scales on occasion. Busy lifestyles can cause us to overlook or gloss over things that can build up over time and blindside us. Certainly, it is true that the first step toward solving any problem is admitting there is a problem!

Stress can manifest itself in a variety of physical symptoms as well, including headaches (tension and migraine), shortness of breath, back pain, high blood pressure, stiff neck, constipation/diarrhea, insomnia, upset stomach, depression, fatigue, relationship problems, weight gain/loss, and fatigue. While these symptoms may point to other maladies, a stress assessment may be the first line of defense in getting down to causes and conditions in ourselves. Learning to reduce stress and its related effects on your happiness and quality of life is caregiver gold!

Dr. Jamie co-authored the acclaimed Take Your Oxygen First: Protecting Your Health & Happiness While Caring for a Loved One with Memory Loss and was featured in The 100 Mile Walk: A Father and Son on a Quest to Find the Essence of Leadership, Voices of Caregiving and Voices of Alcoholism. Dr. Huysman writes for Caregiver SOS, Florida MD and Today’s Caregiver magazines and blogs on PsychologyToday.com.

The poet, John Donne wrote, “No man is an island entire of itself; every man is a piece of the continent, a part of the main…” As caregivers and persons receiving care, many of us wrestle with the notion that we may become dependent on others. We find ourselves struggling mightily against acknowledging that we need help. But John Donne’s words remind us that perhaps we were never intended to be independent of other people. Choosing to stand alone, come what may, runs counter to the reality of being human.

I find comfort in John Donne’s words. If one person needs assistance then it’s okay for any person to need assistance. The ideal of independence is an illusion. But do I have the luxury of feeling comforted, because I haven’t reached the point where I am dependent on others?

For years as a professional in the field of aging, I have wondered how we make it okay to accept help. How do we make it okay for caregivers to get the help they need over the long run? How do we make it okay for older persons and persons with disabilities to receive assistance? Finally, how do we make it okay for ourselves?

I recently had the privilege of seeing Richard Turner, the self-described “card mechanic” and one of the world’s greatest card trick artists. He performed at a local charity event with amazing card tricks that were invisible to the eye as they were projected on large screen monitors around the room. The 2017 documentary titled “Dealt” follows him for a year as he is nominated for the Close-Up Magician of the Year Award from the Academy of Magical Arts. Interestingly, what Richard Turner might tell you is the least important aspect of his life, and his accomplishments, is that he is completely blind.

Richard Turner has attempted to live his entire life as if he is not blind. That means that he didn’t learn braille, didn’t use a cane or a seeing-eye dog, and relies on family members to support his independence in a manner that makes his blindness almost invisible.

Richard’s younger sister suffers from the same rare eye disease and is also blind. His influence on her was strong growing up, so she lives most of her life without adaptive equipment just like him. The turning point of the story (spoiler alert) comes when she decides to get help, to use a cane and a seeing-eye dog. She then discovers that being willing to let others see that she is blind gives her greater freedom than she has ever experienced.

Richard slowly realizes that he might be placing a greater burden on his wife and son, because he doesn’t accept traditional tools for the blind. His sister becomes a mentor to him, and he too begins to embrace his own blindness.  Like John Donne, Richard discovers that he is not an island separate from his blindness, but that it is a part of him that has always influenced and shaped him – and perhaps even made him the great card magician that he is today.

In the end, I think that Richard gives me the answer for which I have been seeking – an answer that he has taken his entire life to find:  How do we make it okay for ourselves and others to give and accept assistance? Richard states, “Something I’ve learned is to accept your weaknesses and to accept help from others. We all have weaknesses. When you accept that, then you can move on with your life. Believe you are special. You have to love yourself.”

In accepting our weaknesses, we give power to our strengths and to those around us who can help do for us what we cannot do for ourselves. Two heads are better than one, and an extra set of hands, eyes, ears and legs may do the trick. With the support we need, we can move our focus to the next thing we wish to accomplish. Perhaps accepting help is really not a trick after all; it’s the magic that changes everything.

WellMed Charitable Foundation Executive Director Carol Zernial is a noted gerontologist, radio show host, and immediate past Chair of the National Council on Aging. The non-profit WellMed Charitable Foundation focuses on complimentary programs impacting seniors and family caregivers, including weekly telephone learning sessions, evidence-based classes on stress reduction and more. Find out more at www.CaregiverSOS.org or toll-free at 1-866-390-6491.