Category Archives: Caregiving

Apr 29 2013

Dementia’s Growing Cost to Caregivers

Kathleen J. Mullen, PhD, is an alumna of the Robert Wood Johnson Foundation Scholars in Health Policy Research program, and an economist and associate director of the RAND Center for Disability Research at the nonprofit, nonpartisan RAND Corporation.

Dementia, a chronic disease characterized by significant impairment of cognitive functioning, afflicts 15 of every 100 Americans over age 70 – and it is their caregivers who are perhaps most familiar with the disease’s effects.

Family members are often the ones who find themselves navigating the complex system of nursing homes, in-home health care, and health insurance (Medicare, Medicaid, and private insurance), all while dealing with heartbreaking changes in the physical and mental functioning of their spouses, siblings, parents or grandparents. Indeed, my own family is struggling to sort through an overwhelming number of options and decisions to help ensure that my 86-year old grandmother receives the best available care now that she is unable to live without daily assistance.

For many families, a significant barrier to that best available care is cost: Caring for someone with dementia is extremely expensive. A recent RAND study, the results of which were published in the New England Journal of Medicine, offers some of the most comprehensive and credible estimates to date of the monetary costs of dementia in the United States. These costs include both out-of-pocket spending and spending by Medicare, Medicaid, and other third parties on nursing home and hospital stays, medical visits, outpatient surgery, home health care, special services (such as outpatient rehabilitation), prescription drugs, dental services, and other needs.

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Feb 7 2013

Tootsie’s Story, Continued: A Family Wonders Whether Nurse-Led Care Coordination Might Have Prolonged a Life

Jennifer Bellot, PhD, RN, MHSA, is an assistant professor at Thomas Jefferson University and a Robert Wood Johnson Foundation Nurse Faculty Scholar. Yesterday, she blogged about the death of her beloved grandmother, Tootsie, due to complications from medical error that began with an overdose of Synthroid.  This is Part Two of Bellot’s blog post.

In 2010, the Robert Wood Johnson Foundation (RWJF) and the Institute of Medicine (IOM) joined resources and released The Future of Nursing: Leading Change, Advancing Health. This landmark report included many recommendations, and a full-scale Campaign for Action is in place that will transform nursing for years to come. Among the many themes advocated in this report is the tenet that nurses should be the very core of reinventing the American health care system. The report encourages the health care system to lean, and lean heavily, upon the skill set and resources of nurses to facilitate access to higher quality care at a lower cost.

At present, we have a health care system that is technology and intervention heavy when we know our population demographics are rapidly changing and technological intervention is not always the right answer. We have a growing need for a system that instead focuses on addressing chronic disease management, prevention and wellness care. Nurses are well positioned to support a system with these foci, managing care of the older adult in the community before inpatient care becomes necessary. Specifically in the outpatient setting, nurse coordinated care that is, by definition, proactive, holistic and comprehensive will help shift the focus of care from acute and episodic to chronic and preventive.

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Feb 6 2013

Tootsie’s Story: Medical Error Takes a Life

Jennifer Bellot, PhD, RN, MHSA, is an assistant professor at Thomas Jefferson University and a Robert Wood Johnson Foundation Nurse Faculty Scholar. This is Part One of a two-part blog about the death of her beloved grandmother.

Just over a year ago, our family lost our beloved matriarch and my grandmother, “Tootsie,” to complications from a medical error.  It’s hard to believe that it’s been over a year now and each day, we feel her loss—or presence—in different ways.  I write about this remarkable woman in this month’s issue of Professional Case Management.

Tootsie was an amazing example of strength, generosity, and perhaps most characteristically, of someone who spent her life caring for others.  She bore eight children in nine years, raised them almost single-handedly after her husband died prematurely, and managed a 160-acre farm—all without a high school degree. Tootsie and I had an especially close relationship, blossoming one summer when I lived with her as a preschooler while my mother pursued her graduate degree.

As I grew older, I would become involved in Tootsie’s medical management. She would regularly send me copies of her lab reports and medical records. Medical talk became our currency of love. We chatted about her latest cardiology consultation like others might chat about celebrity gossip. Following and safeguarding her health was how we shared our love best.

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Dec 17 2012

The Role of Caregivers in Supporting Patients Living with Chronic Illness

Andrea Wallace, PhD, RN, is an assistant professor at the University of Iowa College of Nursing and a Robert Wood Johnson Foundation Nurse Faculty Scholar.

Patients live in communities that offer support and include influences that are outside the walls of clinical settings. While this is not a new revelation, I have often had to remind myself and the students I teach that, as health care providers, we witness only a very small part of patients’ lives, generally at a time when they are most removed from their experience of daily living.

"I cringe to think of how many of my adult patients I’ve asked to adopt a complex medication schedule for their diabetes, all the while suspecting they may have limited literacy skills"

We must remain continually aware of patients’ personal and financial resources when planning care. But it was not until recently that I became incredibly taken with the idea that, for many patients living with chronic illness, it’s those who help patients care for themselves—the daughter picking up medications, the neighbor driving to appointments, the spouse doing shopping – who may make the difference between successfully and unsuccessfully coping with what can be incredibly complex self-management regimens.

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Dec 10 2012

The Loneliness of Caregiving

Laurie Theeke, PhD, RN, is an assistant professor of nursing at West Virginia University and a Robert Wood Johnson Foundation Nurse Faculty Scholar. Her research emphasizes the development of interventions that target loneliness as a psychosocial stressor that impacts overall health.

Due to increased longevity in the older adult population, significant numbers of older adults are finding themselves serving as caregivers for spouses, children, and grandchildren. Loneliness has been identified as a key predictor of poor quality of life for caregivers.

Caregivers make difficult personal choices on an everyday basis that frequently involve personal sacrifice of time spent in leisure activities, time with family beyond the specific caregiving relationship, and time spent enjoying and maintaining normal social networks that enhance wellness.

Caregivers can experience internal conflicts between not wanting to leave the loved one who needs them and the need for personal expression, development, and socialization. This conflict can present as psychological stress, potentially contributing to negative health outcomes for the caregivers.

As nurses, it is important to recognize that the loneliness experienced by caregivers is predictive of depression and may ultimately be the demise of the caregiving arrangement if it results in functional decline or illness in the caregiver.

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Dec 3 2012

Caring For, and Learning From, a Relative with Intellectual Disabilities

Susie Breitenstein, PhD, RN, PMHCNS-BC, is an assistant professor at the Rush University College of Nursing and a Robert Wood Johnson Foundation (RWJF) Nurse Faculty Scholar.  Breitenstein is a child and adolescent psychiatric clinical nurse specialist; she works with children and families with developmental and intellectual disorders.

My Uncle Greg was born in 1947. He was the 5th of six children.  About six months after his birth, my grandparents were advised to place him in an institution. Greg had the genetic disorder, Trisomy 21, more commonly known as Down Syndrome. In 1947, there were few services for children and adults with intellectual disabilities and very little expectations for independence and cognitive and social abilities. In fact, institutionalization was considered the best option for the child and family. My grandparents rejected this option and chose to keep him at home and raise him with his siblings. This was not an easy decision as they were told that he would never walk, learn, or participate in society.

Throughout his life my grandparents, Greg’s siblings, their spouses, and his 25 nieces and nephews took great joy in his accomplishments and his personality. After he learned to walk, every evening my grandfather would take him on a walk in the neighborhood. When he learned new things, his family rejoiced. When he participated in family, religious and social events, we applauded. When he sang ‘Silent Night’ off key, we beamed.

Greg was full of life—the friendliest and happiest person I’ve known.

During Greg’s life, many changes occurred regarding understanding of Down Syndrome and treatment options for individuals with Intellectual Disabilities. In fact, in 1959, the chromosomal abnormality causing Down Syndrome was discovered. In the 1960s there emerged the field of developmental pediatrics and understanding that an enriched environment can support cognitive function. In the 1970s, the right of every child to a free and appropriate education was established.

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Dec 13 2011

Navigating Care Across Settings: The Role of Caregivers

Alicia I. Arbaje, MD, MPH, is an alumna of the Robert Wood Johnson Foundation (RWJF) Harold Amos Medical Faculty Development Program and the RWJF Clinical Scholars program. She is Assistant Professor of Medicine and Associate Director of Transitional Care Research, Division of Geriatric Medicine and Gerontology, at Johns Hopkins University.

Human Capital Blog: Can you describe the typical patient you see on a daily basis?

Alicia Arbaje: As a geriatrician, I see patients who have complex chronic illness. Usually they’re over the age of 65, and even more commonly over 80. Many of my patients have more than one chronic illness, take several medications, and see multiple doctors. These are people who are interacting with the health system frequently, and they go in and out of the hospital quite a bit. Health care takes up a big portion of their life.

HCB: Do these patients have caregivers?

Arbaje: Most of them do. The ones who are fortunate do. Most often that caregiver is a daughter or a son, sometimes a spouse, neighbor, or a friend. Their responsibilities range from supervising – making sure the patient gets to an appointment or taking notes during a visit – all the way to doing things for the patient like feeding them and helping them dress. Some caregivers have an additional responsibility of making health care decisions, like what kind of treatments they get and the end of life care they receive. It’s very important that I work with their caregiver too because most of the patients aren’t able to do all the things they need to do to stay healthy on their own.

HCB: Your job and research focus on transitional care. What exactly is that? What role do caregivers play in transitional care?

Arbaje: Any time a patient moves from one health care setting or provider to another, that’s a care transition. For example, going home from the hospital or going from home to a doctor’s office. Care transitions are actually dangerous moments, and when caregivers need to be most involved in their loved one’s care.

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Dec 1 2011

The 'Burden' of Family Caregiving Never Ends...

By Anna Song Beeber, PhD, RN, Assistant Professor at the University of North Carolina at Chapel Hill and a Robert Wood Johnson Nurse Faculty Scholar

A common view in our culture is that residential long-term care services, such as nursing homes and residential care/assisted living communities, are a replacement for family care provided in the home. In general, older adults and families want to avoid long-term care placement, in part because they fear loss of independence, loss of a home life, and neglect at the hands of staff. Thus, a bulk of the research literature has focused on measuring, preventing and intervening to reduce the burden on family caregivers with the goal of avoiding nursing home placements.

As clinicians, we try to work with older adults and their family caregivers to preserve function and safety, and to find the best community-based support services – all in the hopes of preventing the need for residential long-term care services and keeping the older adult in the home.

At the same time, family caregivers work hard to provide what their family members need, often at a high cost; financially in terms of lost wages, as well as costs to caregivers’ physical and psychosocial health.

All of this work to prevent the use of long-term care services can create the suggestion that, once an older adult enters residential long-term care, the system and the family caregiver have failed to meet the older adult’s needs.

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Nov 29 2011

The Public Health Crisis that Overwhelms Families: One Family's Caregiving Story

By Sarah L. Szanton, PhD, CRNP, Assistant Professor, Johns Hopkins University School of Nursing and a Robert Wood Johnson Foundation Nurse Faculty Scholar

In my years as a nurse practitioner providing house calls to homebound older adults and their families, some of the most poignant experiences I have had are with the families of completely paralyzed older adults.

In one particular family, the “successful” children had moved up and out of the under resourced, chaotic neighborhood in which the family had lived for decades. The remaining child, a 50-year-old woman, was taking care of their mother who had been completely paralyzed by a stroke years earlier. This caregiver told me she had never completely gotten her life together, reported that she had had issues with substance abuse. She said her siblings held jobs; one was a teacher and the other an employee at the local Blue Cross Insurance Company.

She clearly felt deserted by them, and they likely felt guilty that they were doing less than their sister – but also proud that they had launched themselves.

The care the grown child provided for her mother was outstanding. This was a woman who was 75 and completely bedbound, incontinent, with no ability to move on her own. Yet she had no bedsores, her skin was beautifully moisturized and the daughter spent time with her throughout the day, talking to her and asking her questions, even though I never discerned any emotion or response from the mother.

When I asked the daughter about how hard it was and how she got through the hard times, she replied that her mother had given her life and “raised her up.” Now, she said, it was her turn to take care of her mother.

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Nov 23 2011

Caregiving: A Transformative Experience Like No Other

By Jennie Chin Hansen, RN, MSN, Chief Executive Officer, American Geriatrics Society

As societies around the world grapple with aging populations, the challenges to caregiving have garnered considerable attention. Already an under-supported group in so many countries, today’s caregivers face an array of new pressures that strain the vital services they provide to older adults. Around the world, unsung heroes assume caregiver roles without question, without hesitation, and without recognition. It is often said that caregiving is the backbone of our global long-term care system.

While caring for an older adult can be one of the most rewarding experiences of a lifetime, it can also be stressful and frustrating. This is especially likely if the older adult has dementia or needs around-the-clock complex care. In fact, most family caregivers are spouses or children. They may have age-related health problems of their own; or they may have small children to care for, or work outside the home, or all of these.

In 1984, my father suffered a second debilitating stroke that left him unable to continue caring for my mother. Widowed and raising a 7-year-old, I decided to move my parents across the country to San Francisco where I was living and where I happened to work at On Lok Senior Health Services, which became the prototype for the now recognized PACE program, caring for elders who want to remain in the community despite their frailty.

I first brought my mother out with me, and she lived with me for a few months. When I went to see my father in Boston, I noticed that my father actually had greater capacity than many of the physicians at the nursing home thought he did. I didn’t agree with their treatment and decided we were going to bring him to San Francisco. So I discharged him “against medical advice” – there’s a term for that, called AMA.

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