Jun 302014

Closing the Care Gap for Families in the 21st Century

In early July, Sen. Bob Casey (D-PA) will introduce a novel policy proposal that could be life changing for the millions of Americans who quietly worry and wonder who they can call on for help and steady companionship when a loved one becomes ill, disabled, or very old.

The Caregiver Corps Act of 2014 is designed to train and organize volunteers of all ages in communities across the country. It would charter local Caregiver Corps to harness the power and passion of volunteers who want to make a difference in the lives of their neighbors and community members. Corps members would provide companionship, as well as nonmedical assistance, such as delivering food or making a minor repair. They can also offer homebound people a way to connect with the larger world.

To ensure consistency and to provide guidance and support for local programs, the bill establishes a national Caregiver Corps program to support local initiatives. It will develop a core training and operational toolkit for communities to use, helping them avoid or solve problems as they launch. Local Corps would then form or existing organizations would qualify and affiliate. Corps could be sponsored by private- or public-sector organizations or perhaps by a community coalition.

Requirements for local Corps would be simple and straightforward. They would

  • Conduct screening and criminal history background checks of volunteers;
  • Provide in-person orientation and core training, along with any supplemental training a community might wish to offer;
  • Administer a system to match volunteers with adults in the community and a system for tracking outcomes of volunteer assistance; and
  • Establish ways to appropriately recognize volunteers, time, and commitment through mechanisms such as time banking, modest stipends, tuition credits, discounts, or debt forgiveness.

The need to create Caregiver Corps programs in communities across the country has never been clearer. The shrinking pool of family caregivers and the economic realities of working families mean that elders will have fewer people on whom to rely. At the same time, the demand for home and community-based services will escalate, but it is not clear that the workforce of personal and home care aides — whose salaries and benefits are low, and whose prospects for advancement are poor — will grow rapidly enough to meet the need for in-home assistance.

Most aged people will, at some point, need the assistance of working-age adults who are willing to help a neighbor to do the small tasks that are essential to living in the community and to alleviate the loneliness of living with disabilities in old age.

Local Caregiver Corps could fill the looming care gap, supplementing the work of family caregivers, and providing the kinds of nonmedical quality-of-life supports that personal and home care aides generally cannot perform. These could range from helping an elder navigate computers and learn other supportive technologies, to accompanying an individual to a cultural outing, to sharing knowledge about topics and activities of mutual interest. They could provide a break for family caregivers or help with mowing the lawn or replacing a light bulb. While volunteers would offer enthusiasm, compassion, and insight, they would also learn essential skills for improving day-to-day life for older adults and their families, both by interacting with these individuals and by supporting programs that serve them.

As we embark on our collective age wave journey, we have no shared cultural experience of living with so many old people all at one time. Transforming personal experience into volunteer experience at the community level in a way that serves a collective good is central to forging a future that we can all live with happily and comfortably. Finding ways to engage and support people of all generations who have the skills, resources, and motivation to help is in everyone’s self-interest. The challenge before us is how we can accomplish this goal, and the Caregiver Corps Act of 2014 is an important part of the answer.

As soon as the bill is introduced or the Senator’s office posts the summary or the bill, we will put a link here. Make a note to check back in a few days! Sen. Casey announced the bill at a Senate Special Committee field hearing in Pittsburgh on June 30, 2014. Titled “Sandwich Generation Squeeze: Confronting the Middle-Class Struggle to Raise Kids, Care for Aging Parents, and Scrape Together Enough for Retirement in Today’s Economy,” the hearing was held from 1 to 3 p.m. in the Allegheny County Courthouse.

Want to learn more?

Sen. Casey press release on the Caregiver Corps concept:

U. S. Senator Robert P. Casey (D-PA):

Keywords: Caregiver Corps, Senator Casey, Caregiver Corps Act of 2014, caregivers, volunteers, family caregiving

May 272014

Family caregivers are the infrastructure upon which the lives and well-being of millions of frail elders rest. Without their presence, and without their filling in healthcare gaps to coordinate and manage care for their loved ones, whole segments of the healthcare industry would simply collapse.

Although caregivers can find the experience of helping others to be a rewarding one, most pay a physical, emotional and financial toll for their effort. Caregivers, who are often themselves midlife and older women, can compromise their own well-being. Those who leave the workforce to care for another adult lose hundreds of thousands of dollars in income, retirement contributions, and Social security.

Family caregivers are essentially volunteers for long-term care. They routinely plan care, making decisions large and small, that affect the lives of loved ones. They are care managers and coordinators, as well as providers. A 2012 United Hospital Fund and AARP study reported that nearly half of family caregivers provide complex medical care to loved ones–usually, with little or no training in what to do things as they manage medications, clean wounds, change IVs, and more.

Despite their tremendous responsibility for making the plan work, caregivers are seldom integrated into the care plan itself. MediCaring aims to change that dynamic, by identifying, recognizing, and supporting caregivers, and engaging them in development of a comprehensive care plan. While caregivers may appreciate the chance to help a loved one by providing intimate, intense care, they can also feel overwhelmed and exhausted by the tasks at hand.  MediCaring understands that caregivers are, in fact, the anchor of the care team.

To this end, MediCaring teams will assess caregivers, too, and understand their capacity to provide care. What is the their health status like, how are they doing? What challenges do they face, what concerns do they  experience? How is that information processed and addressed in the care plan? Does the plan also include ways to care for the caregiver?

Caregivers can benefit from a partnership with health care and social service providers.  Existing family-centered care models consider caregiver input essential for providing strategic and expert services for both the health and well-being of the care recipient and the caregiver.

The MediCaring team will be trained to recognize the level of support that caregivers need, and to provide information and resources that address those needs. MediCaring teams will also  recognize that caregivers these widely different needs will change over time and as an elder’s condition progresses or worsens.

Assessing caregivers is essential, as is a mechanism for offering them respite services.  Caregivers who feel burdened or overwhelmed experience declines in their own health. By offering services that enable caregivers to  become more competent and confident in providing safe and effective care to their loved ones, Medicaring will reduce some burdens and stress. Research indicates that such interventions must be multifaceted, including both training to enhance efficacy and personal support for emotional and coping skills.

Caregivers who serve as health care proxies face additional stresses. Making decisions for and about another adult is a difficult role to play. Those caring for people with dementia repeatedly face this challenge, and yet often receive little context or training to interpret the meaning or urgency of what a loved one needs.

Navigating the health care system is an onerous task, even for healthy adults. For those who are ill, or vulnerable, or overwhelmed, it can become impossible., Although a number of new programs have been developed to train caregivers, caregivers remain home alone, with inadequate knowledge and resources to deliver proper care.

PBS NewsHour released a telling infographic: “The $234 billion job that goes unpaid,” which characterizes the context of such caregiving. If family caregiving were a federal agency, it would be the fifth largest. Would policymakers simply ignore an entire nation? Or would we aim to help its citizens overcome challenges and realize opportunities? Would we invite them to the table, to conference rooms and negotiations? Would we want them to succeed? It all seems likely—and yet, we have not.

Our healthcare system—and our society—pay lip service to the value of such care, but seldom delivers the supports and services that would

key words: Joanne Lynn, Janice Lynch Schuster, MediCaring book, frail elders, family caregivers

Nov 192012

By Maryann Ingram

I am caregiver to my live-in sister-in-law who has Korsakoffs and vascular dementia, with the onset at age 59. She lived in a nursing home for six years and then came to live with me last October under the “older adult living at home” waiver program.

I take her to all of her doctor appointments, and carry in hand my own “cheat sheet “ that contains important information, such as her medication list, her immunization history, code status, religion, list of all her doctors, and her medical history with dementia written across it in bold capital letters. I also include a copy of my power of attorney.

Recently, I escorted her to a local hospital for a cardiac procedure. While we were there, I told everyone we came in contact with that she had dementia. This list of people included the registration person, the admitting nurse, the nurse practitioner taking her history, the technician starting the IV, and the procedure nurse.

I informed them all that she had dementia and to be aware her answers to their questions would mostly be unreliable. I was amazed when the doctor completed the procedure and came out to speak to me:  He told me that the procedure had gone well, there no changes from her last study, and there was no need to do a stent. Still, he said, he remained puzzled by her symptoms.

“What symptoms?” I asked.

He replied that she had told him she was very short of breath and, for the past several weeks, had been unable to take her daily three-mile walk.

I had to laugh, just to keep my frustrations from being expose—then I told him about her dementia, and that she had never walked three miles daily. Last spring, I mentioned, we had taken an occasional walk in the park.

His jaw almost dropped. “Oh!” was all he could say. I informed him that I had told absolutely every person with whom we had come into contact that she had dementia, and that I had asked each one to label her chart, DEMENTIA.

I really wondered why he had not been told , but he treaded lightly and quickly changed the subject .

I decided to speak to the hospital patient advocate and simply told her the situation and then I said: “You put a bright red armband on FALL RISK patients. You clearly identify those who have drug allergies, don’t you?” She said that they did.

I suggested then that perhaps the hospital could do something similar to identify dementia patients, perhaps to giving them a purple wristband that would identify them, and note that they presented safety risks, unreliable information, and so on.

Has anyone ever considered such a universal identification system for patients living with dementia? It seems to be a real safety issue for them, and for their caregivers. I’m curious to know whether other MediCaring readers have had similar experiences, and what they make of my suggestion.

You can contact Maryann Ingram in care of medicaring at [email protected] Ms. Ingram, an LPN with 20 years of experience in long-term care, is serving her second term as an appointed member of the Maryland Board of Nursing.

key words: dementia, Alzheimer’s disease, long-term care


Mar 012012

This article, by Janice Lynch Schuster, originally appeared on the Altarum Institute Health Policy Forum on Thursday, March 1, 2012

A few days into my 68-year old father’s hospitalization for sepsis, his doctors determined the strain of bacteria that plagued him: streptococcus. My sister was there when they came in with this part of the diagnosis; she has a doctorate in engineering with a focus on the human heart (that engineering marvel), and she likes details.

“What strain?” she asked the doctor. “A, B, or C?”

His reply: “What does it matter to you?”

This exchange was, admittedly, not typical for this hospital and this doctor, so I’ll forgive him some. And the strain did not, in fact, matter in the course of his treatment. But the routine arrogance found in doctors and hospitals does not serve patients and family members well. Knowing the particulars of what ails you often matters a great deal, especially for patients like my father, hospitalized and on the verge of being discharged home or to some other setting, but not yet “well.”

Knowing this kind of information—the details of your diagnosis and likely course, and how your care should happen at every step along the way—is critical to enabling patients and family members to function as respected participants in care, including ensuring safe transitions from one care setting to another. Much recent research indicates that those transitions are fraught with errors and complications. Patients often do not know or understand what is happening to them and critical information is not transferred from one provider to another, and that costly (and sometimes deadly) rehospitalizations are the norm for some 20 percent of Medicare beneficiaries who have been hospitalized.

Patients and their family caregivers are central actors in making transitions safer. Indeed, since they are the only constant in the transition from one setting to another, patients and caregivers must increasingly assume the role of knowing as much as they can about what is going on with their care. Experts in the field refer to this kind of involvement as “patient activation” or “engagement,” which occurs when patients have the knowledge, skills, beliefs and confidence to manage their own health care processes and behaviors.

Increasingly complex health systems, in which difficult and important treatment decisions must be made, require patients and families to be well-informed about their diagnosis or condition, its specific treatments, and their individual care plan. According to research by Judith Hibbard and many others, patients who actively participate in managing their care have better health outcomes.

Patient activation can even be measured with a tool, the Patient Activation Measure, developed by Hibbard and her colleagues in the earlier part of this decade. The short-form of the tool includes 13 questions, which clinicians can use to assess patient understanding of their illness. Questions to the patient and caregiver address topics such as understanding why certain medications have been prescribed, whether lifestyle changes might help and ways that self-treatment can help. The PAM categorizes patients in one of four levels, with the first being the least activated patient, who does not have the confidence to engage in his or her own care and who is a passive recipient of that care; at the highest level, patients understand and manage their illness and maintain their health status despite stresses and crises.

The idea that patients should be active participants in their care is not new. The 2001 Institute of Medicine report, Crossing the Quality Chasm: A New Health System for the 21st Century, states, “Care for the chronically ill needs to be a collaborative, multidisciplinary process. Effective methods of communication, both among caregivers and between caregivers and patients, are critical to providing high-quality care. Personal health information must accompany patients as they transition from home to clinical office setting to nursing home and back.”

In our current health care environment, in which patients are sometimes discharged “quicker and sicker,” they are expected to be more in charge—activated—than ever. They need to make and keep follow-up doctor appointments, manage complex medication regimens, organize home health care and visiting nurse appointments, store powerful medications, and track, monitor, and report changes in their health status. It’s a tough order, especially for people like my father, who do not know or understand the health care system, and find its workings difficult to navigate. Many good websites point patients, families, and health care providers to useful resources and strategies, among them http://www.informedmedicaldecisions.org/ and http://www.caretransitions.org/.

Ultimately, knowing the strain of my father’s strep infection was not going to change its treatment, and that may have been what the doctor meant. But in dismissing my sister’s concern, he was dismissing what is increasingly seen as essential to good health care. My sister is not one to be daunted by being dismissed, but many patients and family members would accept the put-down and never again ask a question. Knowledge, truly, is power, especially for people who are sick, vulnerable, and afraid. Being supported to understand and to manage the situation over time certainly can help patients and families to cope with what is happening and to prepare for and respond to it. In the end, the answer to the impertinent doctor is: “It all matters,” if only to establish a baseline mutual respect that encourages conversation about a diagnosis and a plan of care. Informed patients and families make for powerful and effective medicine.