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.
By Jennifer L. Wolff, PhD, and Robert Wood Johnson Foundation Physician Faculty Scholar Cynthia M. Boyd, MD, MPH
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.
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).
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.
By Sarah L. Szanton, PhD, CRNP, Assistant Professor, Johns Hopkins University School of Nursing and a Robert Wood Johnson Foundation Nurse Faculty Scholar
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.
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.
By Elizabeth Galik, PhD, CRNP, Assistant Professor at the University of Maryland School of Nursing and a Robert Wood Johnson Foundation Nurse Faculty Scholar
Older adults with dementia are more likely to be physically inactive, require assistance with personal care activities, and have more medical problems than older adults without dementia. There is a tendency to promote sedentary activities rather than exercise among older adults with dementia for fear that they will fall or injure themselves if they are allowed to be mobile and physically active.
Despite the gradual and progressive cognitive and functional decline associated with dementia, there are benefits to keeping older adults engaged in their own personal care and physical activity. These benefits include slight improvement or maintenance of functional abilities, fewer behavioral and depressive symptoms, better sleep, and fewer falls. A function-focused philosophy of care is designed to prevent or minimize functional decline and optimize the function and physical activity of older adults regardless of their memory impairment. It promotes the belief that all older adults are capable of and benefit from some improvement or maintenance of functional potential, even though the function may not be entirely independent, such as passive range of motion through hand-over-hand feeding, or encouragement of self-propulsion in a wheelchair.
Caregivers also benefit from using a function-focused care approach. Even small improvements in the functional performance of older adults with dementia may decrease the physical requirements of caregiving, such as heavy lifting, and also may result in psychological benefits for the caregiver, such as increased self-confidence and improved satisfaction with his/her caregiving role.
A Family Caregiver and Patient Safety Advocate Says: We Don't Need to Reinvent the Wheel, But We Need to Roll on the Ones We Have... Collaboratively
By Carol Compas, PhD(c), BSN, RN, CPHQ, Program Director, Partners Investing in Nursing’s Future, Little Rock, Arkansas
My broken health care journey begins with a call from my sister on August 18 at 5:15 p.m. I am beginning to wrap up my busy workday when I take a call and hear a tearful plea along the lines of: “Mother has been in a wreck and they are asking for the next of kin.” I leave work, agreeing upon a designated meeting point so we can ride together to reach our mother in the most timely fashion. Our “normal” routine would have safely delivered us home for dinner with family, but this evening our routine will be at the mercy of the health care system, starting in the emergency room.
As we struggle to safely navigate rush-hour traffic, we know the normal one-hour drive is looking more like a two-hour journey to reach our mother—not so timely in light of the situation. As we drive, we tag-team our cellphone communication between family, friends and, in this case, care providers. The fortunate thing for my family is, I have a 25-year career in intensive care, emergency medicine and quality improvement. So, as my sister is responsible for family and friend notifications, I am taking on responsibility for a rapid-cycle health care plan for mother. I phone the ER to make sure they are aware of the head injury en route, review her medications, list allergies and highlight the pertinent medical history. The charge nurse assures me she has documented my information and will pass it on once Mother arrives. I’m somewhat assured things will operate accordingly since I feel confident I am on her health care team. My sister and I arrive an hour after Mother does, are quickly escorted to her side, and find her calling out for me.
By Lynn Feinberg, MSW, Senior Strategic Policy Adviser, AARP Public Policy Institute
My father was one of the smartest, most caring, and endearing persons I have ever known. An attorney by profession and a veteran of World War II, he was a loving husband, father, and grandfather, and a true friend. Everyone liked and respected my dad. And I mean everyone. He had that unique ability to connect with people of all ages. Quiet and gentle by nature, he was a listener. When he spoke, it was always with words of kindness and wisdom. Caring for my father—along with my mother, two sisters, and four home care aides—and ensuring that he lived in old age with the dignity and respect that he deserved was one of the most important, and profoundly meaningful, experiences of my life. It was also one of the hardest roles I’ve ever had. He died nearly 3 years ago at the age of 94. I miss him deeply.
As a social worker and policy researcher, I’ve been working on family care issues for about 25 years now – before family caregiving for an aging relative or friend became the “new normal” of the baby boom generation. Even with my professional knowledge in the areas of gerontology, health care, and long-term services and supports (LTSS), we couldn’t always get it right for my dad. As a family, we faced what many of the 62 million family caregivers in the U.S. experience day in and day out: our health care and LTSS systems are enormously fragmented, very expensive, and are not set up to meet the needs of family caregivers or those for whom they care.
By default, the real coordinators of care for frail elders and adults with disabilities are their family caregivers. The economic value of the unpaid care they provide is estimated at $450 billion in 2009 by the AARP Public Policy Institute, up from $375 billion in 2007. If family caregivers were no longer available—or let’s say hypothetically, went on strike for a day—the health care and LTSS systems would be overwhelmed by the increasing need for services and supports.
By Robert Wood Johnson Foundation Physician Faculty Scholar Cynthia M. Boyd, MD, MPH and Jennifer L. Wolff, PhD
With increasing numbers of Americans living to older ages, it is no surprise that a growing number are challenged by complex medical needs and disability. Being able to perform activities of daily living (bathing, dressing, etc.) and instrumental activities of daily living (shopping, managing medicines, housework, etc.) make a great difference to independence, quality of life, and peace of mind.
Although these functional measures matter tremendously, older adults also often struggle with managing multiple chronic conditions. Older adults’ ability to navigate our fragmented health care system, to process the complex medical information needed to inform their health care decisions, and to carry out a treatment plan that often includes multiple medication and lifestyle changes are not reflected by ADLs/IADLs (activities of daily living/instrumental activities of daily living), yet are essential to the quality and outcomes of their health care.
Family and friends often assist with medical tasks and communicate with health care providers, and yet the health system is not well equipped to support patients in the broader context of their helping networks. For example, by some definitions, the daughter who stops by everyday to check morning blood sugar, takes off of work three times per month to bring her dad to get blood drawn for blood thinner monitoring and accompany him to various routine appointments would not be considered a caregiver. (Wolff J, Kasper J. Gerontologist. 2006, Giovannetti E, Wolff J. Milbank Quarterly 2010) Yet, the ability of health care providers to care for the dad, including both making health care decisions and implementing his treatment plan, is very dependent on the daughter’s willingness and ability to help.
So this month, we’d like to honor the many “caregivers” who are so critical to caring for patients with complex health care needs, but whose roles and contributions are too often under-recognized. Treatment burden – the aggregate effects of everything people with multiple chronic conditions are asked to do for their health – affects patients’ quality of life, quality of care, and likely their adherence and health care decision-making. Caregivers play a crucial role in helping older adults with multiple chronic conditions manage their health-related tasks, and they may also experience difficulty as a result of doing so.