Category Archives: Caregiving
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.
A Special Challenge and a 24/7 Responsibility: Caring for a Family Member with a Mechanical Heart at Home
By Jesus (Jessie) Casida, PhD, RN, CCRN-CSC, APN-C, a Robert Wood Johnson Foundation Nurse Faculty Scholar
Mechanical hearts such as left-ventricular assist devices (LVADs, see websites below) have evolved from a life-saving technology to a viable option for sustaining life and improving the quality of life for patients with end-stage heart failure. Whether the LVAD is implanted as a bridge or an alternative to heart transplant, a family caregiver has to assist the patient in implementing the complex home care regimen.
My experience with LVAD caregivers began in 1990, which I had a first-hand experience with the evolution of the technology and first witnessed the day-to-day challenges faced by caregivers. A reliable and competent caregiver who will be responsible for helping the patient to carry out the home care regimen is the first step in the planning process LVAD implant.
As an advanced practice nurse, I was responsible for training and evaluating the caregivers’ readiness, and long-term follow-up. Discharge preparations for caregivers are complex and include completion of “LVAD Care” training and competency validation through written tests and skill demonstrations. Moreover, the patient’s home is fitted with the appropriate electrical outlets and voltages, and the local hospital and emergency services are notified prior to discharge.
By Linda Wright Moore
RWJF Senior Communications Officer
Help wanted: Must be available and on call 24/7, year round. No vacations, no days off, no benefits or retirement plan. Base salary: zip. Likely to require taking time off from paid work (without pay) under the Family and Medical Leave Act. Qualified candidates should expect to use own funds, including savings, for expenses. Preferred applicants should have extensive experience in scheduling and arranging transportation to multiple appointments; administration of medications and treatments; and management of complex, chronic and acute conditions. Most importantly, they must be skilled at coordination of care, with capacity to connect with overburdened primary care providers who are too busy to talk, and a bloodhound’s nose for tracking down elusive specialists for consultation, on the rare days they are not in surgery at dawn, out to lunch or gone for the day at 3:45pm. Must agree to forgo taking care of one’s own health (no time for that!) Total commitment is required and will be rewarded with the satisfaction of doing the right thing for someone close to you – even as personal hopes, hobbies and aspirations are stashed in a lock box for which there is no key. WARNING: Rarely do individuals actively seek this position; like life itself, it generally just happens to people. And once it does, beware: you’re not allowed to quit.
If this sounds like your life – then you’re a family caregiver, and now is your time. Mine too. I’m the primary caregiver for my husband, who has been disabled for over a year now.
Here’s some good news: November is not just for turkey, dressing, Pilgrims and pumpkin pie. Along with Thanksgiving, November is National Family Caregivers Month, a time for recognizing and giving thanks for – and to – the 43.5 million family caregivers over age 18 in America, whose unpaid services to support the health needs of family members aged 50 or older were valued at $375 billion in 2007.
More than 65 million people in this country provide care for a chronically ill, disabled or older family member or friend, according to the National Family Caregivers Association (NFCA). Caregivers play an important role in the health care system, serving as patient advocates and aiding medical professionals in providing high-quality care outside of the hospital.
AARP’s Public Policy Institute, The Commonwealth Fund and The SCAN Foundation last month released a report showing each state’s performance in the delivery of long-term services and supports to older adults and people with disabilities. It includes a scorecard that looks at how each state supports family caregivers and patients. While it finds “substantial” variation from state to state, those with the highest levels of performance “have enacted public policies designed to… address the needs of family caregivers by offering legal protections as well as the support and services that can help prevent burnout.”
Those kinds of supports can make a huge difference for family caregivers, experts say, because many struggle to balance their own care with that of their loved one. Nearly one in four caregivers cut back on spending for their own health or dental care to help with the expenses associated with caring for a relative or friend. Caregivers report using their savings or cutting back on basic home maintenance to pay for a loved one’s care. In fact, in 2007, family members caring for someone age 50 or older reported spending an average of $5,531 out of their own pockets.
It’s not surprising, then, that a survey released last week by NFCA finds family caregivers are concerned with taking care of their personal health, lack of respite care, and meeting financial needs.
“Many family caregivers take on a significant and sustained burden of care," NFCA President and CEO Suzanne Mintz said in a statement. "This survey confirms that. More than one-half of the respondents have been in their caregiving role for five years or longer, one-third care for more than one person, and they assist with more daily activities than a typical family caregiver."
In recognition of their dedication and efforts, the month of November has been designated as “National Family Caregivers Month.” Throughout the month, the Robert Wood Johnson Foundation Human Capital blog will feature posts by RWJF scholars who are conducting research relevant to caregivers, and by RWJF staff and other experts with important stories and perspectives. We invite you to join the conversation. Register below to leave a comment on this or other posts.