Category Archives: Family caregiving

Apr 29 2013
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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.

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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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Dec 28 2012
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YOUR Favorite Blog Posts of 2012

The Robert Wood Johnson Foundation (RWJF) Human Capital Blog published more than 350 posts in 2012. Which ones were your favorites? Today and on Monday, with the year coming to an end, we’re taking a second look at the posts on this blog that attracted the most traffic this year.

A Dream Comes True: A Single Mom with Five Kids Becomes a Nurse. Christy O’Keefe, RN, made the leap from hospital administrative staff to emergency room nurse with help from the RWJF Jobs to Careers program. In the sixth most-read post published on this blog in 2012, she shares the experience, talking about overcoming doubt and what her career means to her and her family.

New Careers in Nursing: A Whole New Direction. Karen Jennings, MS, RN, PMHNP-BC, was well on her way to earning a PhD in clinical psychology. But while working at McLean Hospital, she noticed the impact nurses had on patients, providing medical knowledge and advanced clinical skills as well as comfort and security. It was then that Jennings changed course, becoming a nurse with support from New Careers in Nursing, a program of RWJF and the American Association of Colleges of Nursing. Her account was the seventh most-read post published on the RWJF Human Capital Blog in 2012.

Nursing Needs All Hands on Deck, Including the Quiet Leadership of Introverts. When Jennifer Doering, PhD, RN, joined the RWJF Nurse Faculty Scholars program, she wondered and worried about whether an introvert could be the kind of effective nurse leader that patients, the health care system and the country need. After reading and pondering, she concluded that “introverted leadership” is not a contradiction in terms. Read more in the eighth most-read post on this blog in 2012.

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Dec 17 2012
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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.

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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
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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.

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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
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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.

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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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Jul 19 2012
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Cautiously Optimistic about the Affordable Care Act - If Older Americans and Their Advocates Speak Out as It Is Implemented

This is part of a series in which Robert Wood Johnson Foundation (RWJF) leaders, scholars, grantees and alumni offer perspectives on the U.S. Supreme Court rulings on the Affordable Care Act.  Margaret P. Moss, PhD, JD, RN, FAAN, is associate professor, Yale School of Nursing and an alumna of the RWJF Health Policy Fellows program (2008 – 2009).

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As I reflect upon the monumental decision by the Supreme Court to uphold the Affordable Care Act, I can’t help but be awed by how the branches of government are alive and well and operating just as they were designed to work.  But as I filter what this decision will mean for the groups I am most closely tied with professionally and personally, I am struck at how the ‘system’—public and private—has largely let them down.

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My professional focus has been in aging, and in particular American Indian aging.  My profession is nursing, with a background in law.  I am optimistic that these groups, both patient and provider, will be lifted and solidified by the spirit of this law.  But I am cautious that the letter of the law must be handled with an eye toward impact, unintended consequences, short-term pilot and demonstration projects, and authorized but unfunded rules.

There can be no question that there are provisions in the Act that no-one would dispute are positive.  The most cited are: 1) no more pre-existing condition exclusions, 2) the ability to keep adult children under parents’ plans until after college age, and 3) widening the net for coverage to include those now uninsured. The opposing point being moot now with the Supreme Court’s decision, we must look forward and responsibly carry out the law before us.  Unfortunately, the devil, as they say, is in the details.

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Mar 20 2012
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Let's Make it Easier for Caregivers to Protect Infants from Whooping Cough

By Deepa Camenga, MD, Robert Wood Johnson Foundation Clinical Scholar

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When I was pregnant with my first child, my husband and I diligently prepared for our new baby. We studiously researched the safest car seats, cribs and strollers, we took labor classes to prepare for the birth, and we ate a healthy diet. My husband accompanied me to every OB/GYN visit, and we both listened closely when the doctor recommended that we should both receive the flu and Tdap (Tetanus, diphtheria, and pertussis) vaccine.

Tdap protects against pertussis, or whooping cough, a debilitating respiratory infection that can be fatal in young infants. I had received Tdap during my pediatric residency as recommended by the hospital, and my OB/GYN provided the flu vaccine, but my husband, an overall healthy guy, had not seen a doctor in years and had not received Tdap. He went to our local pharmacy for a flu shot, so I could check that off our list, but as the months moved forward, still no Tdap.

Fast forward to the delivery, when upon discharge our nurse again reminded us about Tdap. I’m sure it sank in somewhere, but it was quickly forgotten when we pulled into our driveway and realized we didn’t know how to remove our son from the car seat. The weeks that followed quickly turned into months…and years. Ultimately, it took a full two years—and the birth of our second son—before my husband was finally vaccinated.

I’m sure this experience is shared by many new parents. It was no surprise to me when I learned that few eligible adults in the United States receive the Tdap vaccine.

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Feb 10 2012
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Going It Together: Physician Visits as a Family Affair

By Jennifer L. Wolff, PhD, and Robert Wood Johnson Foundation Physician Faculty Scholar Cynthia M. Boyd, MD, MPH

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It is widely recognized that family members and trusted friends make an enormous difference by assisting disabled older adults with daily household and personal activities. There is less awareness, however, that families and trusted friends also often help older adults navigate our complex and fragmented health care system to get the best care possible—by scheduling and arranging transportation to appointments, engaging in medical decision-making, or overseeing adherence to health care treatments. As we learn more about how older adults navigate the health system, it is becoming clear that they often do so with the support and active engagement of a “family companion” —and that this role is enduring.

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In a study we published in the January issue of the Journal of the American Geriatrics Society (JAGS), we found that nearly one-third of adults over age 65 were accompanied by what we called a “family companion” during routine physician visits. These companions were almost always family members (93.3 percent), and they typically accompanied their loved one to physician visits on a regular basis—70.3 percent were identified as “always” present.

We were surprised by the persistence and consistency of family companion involvement. Three quarters (74.5 percent) of older adults continued to be accompanied by a companion at one year follow-up, nearly always the same family companion (87.1 percent).

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Jan 6 2012
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New Year's Resolution: Fully Informed Choices

As we head into 2012, the Human Capital Blog asked Robert Wood Johnson Foundation (RWJF) staff, program directors, scholars and grantees to share their New Year’s resolutions for our health care system, and what they think should be the priorities for action in the New Year. This post is by Diana J. Mason, PhD, RN, FAAN, Rudin Professor of Nursing and Co-Director, Center for Health, Media & Policy, Hunter College, City University of New York; Strategic Adviser, Future of Nursing: Campaign for Action; co-editor, “The Nursing Profession: Development, Challenges, Opportunities,” RWJF Health Policy Book Series.

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While I was editor-in-chief of the American Journal of Nursing, I and some of the editorial staff noticed that most of the manuscripts we received for our narrative column, Reflections, were about death and dying. We begged people to submit columns on other topics, lest Reflections become As I Lay Dying. But I shouldn't have been surprised.

As a nurse and daughter of a man who died at 58 from metastatic cancer, I have cared for many dying people and have been privileged to be with some at the moment of their deaths. I've had patients who told me that they were going to die that night—and they did. I've seen an 85-year-old woman kept alive on a respirator with an open abdominal wound for four weeks before she became septic and died, despite her stated wishes to not have such extraordinary measures. Caring for my father during the last month of his life was the most precious gift I was able to give to him—and to myself. Yet, I had to fight with the health care system to ensure that he was adequately medicated when hospitalized or to be able to remain with him during an emergency room procedure. I fought to take him home so he could die there, as he wished, with love and comfort care.

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These experiences imprint themselves indelibly on our memories and our souls. They can be rich and profoundly move us to confronting the realities of our own life and inevitable death. Or they can make us witnesses to torture and inhumane treatment of the dying, and shake our core beliefs about how a rational, caring society behaves.

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