May 232013

By Anne Montgomery

Leaning into the podium at the Graduate Center of the City University of New York on May 14, Judy Feder, professor of public policy at Georgetown University, is poised and intent.  She is speaking to a room full of researchers, advocates and academics who are hoping to ignite a national conversation about why now is the right moment for family caregivers to underscore their importance to the U.S. health and long-term care system.

But first, Feder administers a reality check: Despite ”overwhelming evidence” that caregivers are “the essential glue” in our health care system, they are often met with “disregard” or “disrespect” by large institutions and individual practitioners, she said.  Moreover, the very fact that family caregivers are the “dominant source” of help for 80% of ill, frail and disabled individuals living at home and in the community contributes to concerns about so-called “crowd-out” costs: The “fear of replacing” unpaid family caregiver labor, she said, has led policymakers and providers to count on their support as a “fiscal convenience.”

A classic example of this overreliance on family caregivers, according to Feder, is the massive (though rarely discussed) shift of responsibility that occurred following implementation of Medicare’s prospective payment system (PPS) for hospitals during the 1980’s.  As hospitals realized that it was in their financial interest to discharge patients more rapidly (often referred to as “quicker and sicker”) under a PPS system, the result for family caregivers was that they were asked to take on much more – often without any discussion, and with no preparatory training or sustained support. “All of this happened with no thought,” Feder said.

Concurrently, a growing body of evidence — including a recent survey conducted by AARP and United Hospital Fund (UHF) – has established that family caregivers are routinely undertaking ever-more complex medical and nursing tasks.  For example, it is now common for caregivers to be expected to assist with ostomy and wound care, administration of intravenous fluids and injections, preparation of foods for individuals on special diets who have trouble chewing or swallowing, and management of ventilators and tube feeding systems.  The net outcome, Feder observed, is that family caregivers find themselves under increasing pressure to “turn their homes into hospitals.” Changing this dynamic, she added, will require serious work.  In a call to action, Feder declared: “The support of caregivers should not be merely “assumed,” but rather it must be “thoughtfully considered….We need to turn this around and get past the lip service.”

Others at the UHF conference, titled “Transitions in Care 2.0,” (which culminated in the release of a ten-step action agenda) were in full agreement.  Susan Reinhard, Senior Vice President of AARP’s Public Policy Institute, observed that the recent AARP-UHF survey documents that more than two-thirds of respondents report significant difficulty with certain tasks — notably wound care, assisting with the use of incontinence equipment and preparation of special diets.  Helping a family member or friend cope with a colostomy is not a traditional ADL,” [Activity of Daily Living] Reinhard said.  The ADL assessment instrument, which focuses on basic, non-medical assistance with eating, dressing, toileting, bathing and transferring, was originally developed in the 1950’s as a way of measuring the help that patients recovering from hip fractures needed.

Mary Naylor, a professor and researcher at the University of Pennsylvania School of Nursing, argued that in the era of the “age wave,” providers should reframe their professional perspective to see themselves in part as “enablers of patients and family caregivers.”  Both Eric Coleman, professor of medicine at the University of Colorado and Luke Hansen, professor of medicine at Chicago’s Northwestern University, noted that it is still uncommon for physicians and hospitals to collect any data on family caregivers — and even rarer to train them. This presents problems, they acknowledged, in making various improvements in the care system “stick.”  Feminist author and caregiver Alix Shulman suggested that it is precisely the lack of “anticipatory guidance,” or training, which individuals who choose to make major changes to their lives in order to assist a seriously ill or disabled loved one find most difficult of all. “Specific conversations are needed,” she said. “Not just a list of websites or a stack of brochures.”

UHF’s David Gould and Carol Levine urged researchers and policymakers to join together to support caregiver assessments that include documentation of both the needs and limitations of caregivers as part of the routine delivery of health and long-term care services. Also needed, they said, are regular surveys of both the patient and the family caregiver’s experience with services, as well as a more sophisticated and systematic approach to identifying the networks of family, friends and neighbors who come together to form a “caregiver corps,” or circle of support, that can be assembled to collectively provide the right level of help at the right time.

Making the necessary adaptations to our rapidly evolving health and long-term care services systems in order to cost-effectively train large numbers of people who may be willing to volunteer some of their time to assist those who wish to age in place is not a simple matter.  Perhaps one way to move a conversation forward is to consider whether the Center for Elder Care and Advanced Illness concept of a Caregiver Corps of trained volunteers can be created to help teams of health care practitioners and direct care workers deliver a more seamless array of services and supports – while also giving families the confidence that they will be able to sustain assistance for the millions of frail elders and individuals with disabilities who want to remain a vital part of the community right up until the ends of their lives. Such a Corps, which would recruit volunteers young and old, would be a step toward addressing workforce shortage issues, and might give communities ideas and strategies they can adapt to solve pressing concerns. Now is the right time for family caregivers and their many allies to work together to think through the possibilities.

Key words:  United Hospital Fund, care transitions, family caregivers, Caregiver Corps, Mary Naylor, Eric Coleman

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


Jul 202012

by Phil Burgess

There are two views of aging in America.

In one, a 70 year-old woman drives another to the doctor.  Across town, a later-life adult takes an even older neighbor to do her grocery shopping and then helps her bring the groceries into the house and makes sure they are properly stored.  When arthritis keeps a home-owner from installing his new storm windows, two volunteers go out to get the job done.  This is the view from the ground, where people are “aging in place,” where real people live, work and play.

There is another view.  That of the hand-wringing analysts and “big thinkers” who tell us that boomers are retiring at the rate of 10,000 a day for the next 18 years; that the number of Americans 65 years or older is about to double – from 35 million in 2000 to more than 70 million in 2030; that Social Security is headed for bankruptcy and Medicare has unfunded liabilities measured in trillions.  To some extent, they are right because our elected leaders are unwilling to address entitlement reforms and new approaches to taxes and spending that are required to get us on the right track.

But at the community level, enterprising Americans are problem solvers, not analysts and finger pointers.  They figure out who needs what and then set out to make it happen.  Somewhere along the way they invariably form a non-profit association to bring people together to get the job done.  Indeed, the American “do-it-yourself” tradition of forming local, voluntary associations to solve problems has deep roots in our culture.

The British statesman and political philosopher Edmund Burke called these voluntary associations the “little platoons” of society and argued that society’s little platoons will out-perform and out-innovate the big battalions of government on most days on most issues – especially human services.

I was privileged last week to see a pioneering and highly-effective little platoon up close.  Founded in 1993 and called Partners in Care – known as PIC – it is headquartered in Pasadena on Ritchie Highway.  Driven by feisty professional women, starting with CEO and co-founder Barbara Huston, and a steadfast, high-energy staff, PIC is dedicated to changing the experience of aging by enabling aging adults to remain in their own home, townhouse or apartment throughout their bonus years.

Last year, for example, PIC member-volunteers, most of whom are themselves seniors, contributed tens of thousands of hours to helping other seniors – including more than  9,000 rides for more than 160,000 miles of “door-through-door” and “arm-in-arm” transportation services.  Most transportation is for medical services – doctors’ appointments and the like – followed by grocery shopping and running errands such as banking and the post office.

PIC member-volunteers also provide home maintenance and handyman services that include fixing leaky faucets, changing light bulbs, painting, cutting the grass and installing home safety equipment – such as grab bars, railings, shower seats, and toilet risers.

PIC’s “lifeline” service provides a personal emergency response – e.g., “I’ve fallen and I can’t get up” – to help older adults live safely at home, providing a sense of security to those living alone and to their families, who may live down the street or hundreds or even thousands of miles away. And PIC provides advocacy services to help elders resolve issues with others in the community such as utilities and landlords.

Here’s how this little platoon works.  When PIC members provide a service, such as transportation, their time is “banked” in the PIC “time-exchange” – like a savings account.  “Though no one who needs a service is denied,” according to Huston, “the PIC exchange is based on the premise that everyone has time or talent to contribute – even if it’s to read a book to an elder with impaired eyesight.  When a member volunteer performs a task or service for another member, he or she earns credit hours that are banked for a later date or donated to another person.  By sharing skills among a large network of people, a community is created, the activities of daily living are accomplished, and people receiving help feel better because they earned it.  The result: Seniors are able to live at home, independently, well into later-life.”

The fact is most Americans in their bonus years are eager to use their gifts of time, talent, and treasure (including experience, not just money) to help others or repair that part of the world they can affect.  Part of PIC’s mission is to provide a way to channel that desire in the service of others.

PIC’s “virtual retirement community” is managed by a small staff.  Compared to assisted living, which can cost as much as $8,000 a month, aging-in-place seniors, who require fewer services, are served by PIC for less than $60 a month .  That is an advantage of a little platoon, “virtual community” approach to the growing national problem of longevity, an approach invented here in Anne Arundel County,.

Still, that $60 has to come from someplace.  The biggest single slice is earned income from The Boutique, located at 6 South Ritchie Highway, where people donate upscale used clothing, jewelry, furniture, glassware and other household items.  All donations and revenues from sales are used to support PIC programs that help older adults remain independent, living in their own homes.  The rest comes from competition for government grants (less than 10 percent), foundation grants, fundraisers and, most importantly, individual donations from community supporters and stakeholders.

Partners in Care is a community treasure.  Not just because it allows people to live out their bonus years at home.  Not just because it provides opportunities for older adults to use their gifts of time, talent and treasure to give back.  And not just because individuals aging in place dramatically reduce demand for taxpayer-funded medical and social services.  Partners in Care is a community treasure because it gives the rapidly-aging population of Anne Arundel and surrounding counties opportunities for giving back in the form of in-kind work and social engagement which, together, are the best predictors of successful aging.  As Marie Beynon Ray put it, “The only [later-life] choice that can’t be justified is retiring to a life of do-nothingness.”

Writer Phil Burgess, a columnist for the Annapolis Capital Gazette, is the author of Reboot: What to Do When Your Career is Over But Your Life Isn’t.  This post originally appeared in the Capital Lifestyle section on July 15, 2012. He is the president of the Annapolis Institute, and is interested in hearing from others about their post-career experience. You can email him at [email protected].

Key words: caregiving, community organizing, volunteer bank, aging in place, Partners In Care,

Apr 272012

On April 13, 2012, Altarum Institute and the Center for Elder Care and Advanced Illness, cosponsored a special event: The Last Word: Influential Women Discuss What Matters When Loved Ones Face Aging.” Moderated by Pulitzer-Prize winning columnist Ellen Goodman, the program featured panelists Cheryl Woodson, Muriel Gillick, Susan Jacoby, Francine Russo, and Joanne Lynn. The group discussed experiences as family caregivers, interactions with patients and families, and myths about what it means to grow old in America. Their conversation sparked lots of enthusiasm and interest.

To watch the entire program, follow this link:

Key words:  Ellen Goodman, Susan Jacoby, Francine Russo, Cheryl Woodson, Muriel Gillick, Joanne Lynn, Janice Lynch Schuster, Altarum Institute, end of life, public policy, aging, caregiving

Mar 272012

From Dr. Joanne Lynn, Director, Center for Elder Care and Advanced Illness, Altarum Institute 

“Nothing about me without me!”  That’s the cry of the disability community and the AIDS community and so many others affected by health care dysfunctions.  But for the elderly, thus far, it has been acceptable for everyone else to shape the care system – the doctors, the drug companies, the Congress, the managed care companies, the care coordinators, and on and on. But where are the voices of the elderly?  When do we hear from the folks providing support and love for disabled elderly persons? 

We desperately need that voice.  Without it, we are prone to make decisions in the interests of the status quo or to prioritize myths and provider interests that don’t match what elderly people and their families most need.  The frail and ill elderly are only sometimes able to voice their own needs – but they mostly have family who love and support them, and those family caregivers can become the key to building an efficient and reliable set of supports and services.

Most of us are now or will be family caregivers – and now, most family caregivers are overwhelmed, unorganized, and voiceless.  We need to change that.  Family caregivers need to speak up on behalf of their elderly loved ones, and themselves, and push back on commonplace presumptions as to what matters most at this time of life.  But those of us who are not right now overwhelmed with care needs need to make it easier for family caregivers to have a voice!

That’s the point of our “Agitator’s Guide” ( We’ve drafted up some specific things anyone can do—RIGHT NOW—to improve the lives of frail elders in your community.   We are looking for your advice.  Tell us what possibilities strike you as worthy.  Try one or two out, and let us know how it goes.  All of us aging persons need to weigh in on this and hit upon some acts that change the power of inertia – that is, “keeping doing what we’ve been doing” – which gets us nowhere. 

The time for speaking out is now – we risk being overwhelmed with the costs and challenges of elder care as the numbers double. We must make services appropriate, reliable, and efficient.  Let’s try out some avenues and see what works!

key words: eldercare, advocacy, quality improvement, patient engagement

Mar 212012

By Janice Lynch Schuster

During two days of sessions at the Institute for Healthcare Improvement’s 13th International Summit, I was struck by repeated messages from plenary speakers and learning lab leaders. No matter the particulars of their presentation, each riffed in one way or another on the fact that we can all act now to change and improve health care so that we obtain better care, better outcomes, and lower costs. More than that, each pointed to the unique convergence of social, political, and health care factors that have set us up to get it right this time, to improve care for patients and their loved ones, to create a better environment for health care providers, and to imagine and implement a system in which health and health care are seen as human rights.

In his keynote address, former CMS Administrator and IHI founder Don Berwick, MD, left the audience with five principles on which to base change. In a nutshell: Put the patient first. Protect the disadvantaged. Start at scale—think big and act big. Return the money—drive waste out of the system and return that money to the community. And act locally.

In the spirit of acting locally, Altarum’s Center for Elder Care and Advanced Illness has developed two guides that we hope will help you to apply Dr. Berwick’s five principles to your work. The first of these is our “Get Started” guide ( to help activist service providers and community leaders imagine, design, and implement community-based systems to improve care transitions. The second of these, “The Agitator’s Guide,” ( offers specific things you can do—RIGHT NOW—to improve the lives of frail elders in your community. Both documents embody the principles Dr. Berwick outlined, and give you an opportunity to test out the improvement mantra: What can you do by Tuesday?

If you test these ideas, we’d like to hear about and report your experiences, insights, and progress. Send a note to ([email protected]).

Key Words:  IHI, Don Berwick, Agitator’s Guide, local improvement

Feb 212012

By Suzanne Mintz President and CEO, National Family Caregivers Association

Across the chronic care continuum there are only two people who are consistently present, a patient and that person’s family caregiver. Family caregivers are acknowledged as the nation’s primary providers of long-term care, but they are not equally acknowledged as primary providers of their loved one’s non-acute healthcare needs. Family caregivers are like undocumented aliens, they have no official status and there is no official record of their existence. There is significant research about the impact that family caregiving has on the health and wellbeing of family caregivers, but there is very little on the impact that family caregivers make in the lives of their care recipients or on the healthcare system as a whole. We know that:

 Persons with multiple chronic conditions are the most vulnerable and medically expensive members of society. Their care consumes approximately 75% of all healthcare dollars.

 Family caregivers provide 80% of the care for this cohort of the population, most of who reside in the community.

 Family caregivers are ill prepared for their “job” as homecare aide, nurse, advocate, physical therapist, etc. There is no organized mechanism for providing the education, training and support family caregivers need.

Medical records are the official documents of the healthcare system. They provide the information on which care plans are developed, insurers pay claims, and the course of an illness is tracked. Yet nowhere on medical records is there a place to record the name of a person’s family caregiver or the fact that someone is a family caregiver. There is a serious disconnect between the day-to-day reality of chronic illness care and traditional healthcare practice and payments.

Until there is a place on medical records to identify who is and who has a family caregiver:

 American healthcare will not be able to truly alter the way it provides care for those with chronic conditions.

 Family caregivers will continue to be relegated to the category of nuisance rather than taking their rightful place on their care recipient’s health care team, one who has intimate knowledge of the patient that is not available to any other team member.

 There will be no mandate for providing family caregivers with the education, training, and support they need to both be a more confident and capable care provider and also a responsible steward of their own health.

 There will be the lost opportunity for research on the impact family caregivers have on their loved one’s health and wellbeing, healthcare costs, the value of different educational and supportive interventions, and caregivers’ own health behaviors.

As we move toward the implementation of electronic medical records and coordinated care it is more important than ever that we address this issue. It is imperative that going forward medical intake forms and official records capture information on who is a family caregiver and who has a family caregiver. Without recognition of the chronic care dyad the treatment of those with long-term chronic conditions cannot be as effective and efficient as possible, and equally important, family caregivers will not regularly be evaluated for the healthcare risks to which they are prone. For all the reasons stated above it is time for family caregivers to be given official recognition as full-fledged citizens in chronic illness care.

Key Words: family caregivers, care plan, public policy, patient activation

Dec 222011

by  Carol Levine

Carol Levine is director of the United Hospital Fund’s Families and Health Care Project, which coordinates the Next Step in Care campaign.

Family caregivers often say that they feel invisible in hospitals and other health care settings. I know what they mean from my own 17 years’ experience caring for my late husband. Even now, when I speak at a program on transitional care, I am usually the only one who talks about family caregivers’ critical roles and responsibilities.  This situation is changing but very slowly.  Transition protocols now sometimes mention the caregiver but only as the add-on to “patient,” as in “patient/caregiver.”

This modern chimera is as fantastical as the fire-breathing lioness/goat/snake of the Iliad. In reality the patient and caregiver are not mirror images of each other. Failing to acknowledge caregivers’ individual limitations and needs for information, training, and support is as misguided as ignoring their intimate knowledge of their ill family member or friend.

For 15 years the United Hospital Fund has been working to change provider practice and give caregivers accurate, pertinent, and accessible information to help them become true partners in care.

The Fund’s Next Step in Care campaign has three main components:

  • A website (, with 23 free downloadable guides for family caregivers available in English, Spanish, Chinese, and Russian. Other guides for health care providers help them work more effectively with family caregivers.
  • Outreach to community-based organizations to train staff to be able to use the Next Step in Care guides in their interactions with family caregivers.
  • The Transitions in Care-Quality Improvement Collaborative, now in its second round, which brings together teams from New York City hospitals, nursing home rehab programs, home care agencies, and hospices to work on processes that involve family caregivers in transition care planning and implementation.

The Next Step in Care guides are organized around four main categories:  (1) information for all caregivers, (2) hospital stays (including discharge planning), (3) rehabilitation services, and (4) home care. In the first category are guides, for example, on becoming a family caregiver, HIPAA and privacy regulations, emergency room visits, and hospice and palliative care, as well as a medication management guide and form.  In the hospital stay category are a guide to help caregivers do a self-assessment of needs and concerns, a guide to discharge planning options, and a discharge checklist.  The rehab and home care sections include guides that introduce these services and tell the caregiver about likely roles and responsibilities, as well as financial aspects.

These resources can be used in conjunction with or independent of any formal transition program.  They provide a basis for identifying and acknowledging family caregivers as the missing link between hospitals or rehab programs and community services.

Key words:  family caregivers, care transitions, toolkits, quality improvement, caregiver information, caregiver support

Oct 192011

In a factsheet from AARP’s Public Policy Institute, Lynn Feinberg and Allison M. Reamy  detail how provisions of the Affordable Care Act (ACA) will lead to better recognition of and support for family or informal caregivers. An estimated 40 million Americans are family caregivers, and provide everything from help with transportation to assistance with daily living. As boomers age, the need for caregivers will grow tremendously—but their numbers will note. It is essential that we have public policies that address the social, financial, and health care realities of people who are family caregivers. The ACA takes a step in that direction.

Noting that the ACA explicitly mentions the term “caregiver” 46 times, and “family caregiver” 11 times, the authors are hopeful in their analysis of how caregivers might benefit from programs and policies enacted under various sections of the Act. In particular, they note that progress will be made in four critical areas: engaging individuals and families in shared decision making and addressing family experience of care; recognizing caregivers as part of the care team in new models of care;  improving education and training not only of the health care workforce, but of family caregivers; and improving support for services at home and in the community.

Of special note is the effect Section 3026, the Community-Based Care Transitions Program, will affect the lives of caregivers.  Under that program, grantees will have to carry out at least one transitional care intervention, which could include any of several scenarios, with a focus on engaging beneficiaries and their caregivers. Topics might include discharge education, help to ensure timely follow-up appointments  with post-hospital and outpatient providers, self-management education, and help with comprehensive medication review and management.

The entire factsheet is available free and online at:

Key Words: care transitions, Section 3026, public policy, health care reform, ACA, family caregivers