Caring for Caregivers
By: Laura Brumm, MSN, RN, CCM
Those who provide care are often at need themselves
Caregiver burden is a growing public health concern. Recent estimates reveal that more than 52 million caregivers are providing long-term care in the home setting. These numbers are expected to rise further as more baby boomers enter the retirement age.
Many caregivers are elderly, with healthcare needs of their own. One quarter of all care- givers are between the ages of 65 and 74, and 10 percent are older than 75. The family, and not the formal healthcare system, provides 80 to 90 percent of care to the chronically ill and injured, and to elderly family members, with services such as medical and nursing care, transportation, shopping, cooking, cleaning and assistance with activities of daily living.
Common chronic illnesses such as arthritis, heart disease, diabetes, multiple sclerosis, Lou Gehrig’s disease, Parkinson’s, Alzheimer’s and renal failure affect nearly every single American family. As lifetimes lengthen, more families are struggling with the changes and strains that come with long-term illness. Caregiving is a big job, and emotions are varied. According to a national survey, feelings reported by caregivers include: loving (96 percent), appreciated (90 percent), proud (84 percent), worried (53 percent), sad or depressed (28 percent) and overwhelmed (22 percent).
A Taxing Role
Our communities have a vital and dynamic asset in family caregivers. Informal caregiving has been called the backbone of long-term health care in America, and most families will agree that this asset must be protected. It may not be possible for the struggling healthcare delivery system to address the needs, or shoulder the majority, of the financial burden for caregiver support, yet many healthcare dollars are funneled through the system in order to pay for caregiver and care recipient illnesses and injuries that preventive and supportive measures could have alleviated.
Caregiving often results in physical and psychological strain, financial stress and social isolation. Many caregivers have chronic health problems themselves, either pre-dating assumption of the caregiving role, or as a direct result of the burden itself. Working caregivers may reduce their work hours, take frequent leaves of absence, arrive late or leave early from their work setting and miss career opportunities.
Case managers are in a unique position to help caregivers recognize and address sources of burden, and to assist with the implementation of well thought-out interventions. Our current healthcare environment is complex, and it challenges the case manager to advocate for what is needed to make the system work better for our chronically ill and disabled clients and the caregivers who support them. The nursing care plan provides a consistent and systematic method that focuses on individual needs as they evolve. A written plan of care with input from all stakeholders allows for the inclusion of preferences of all family members and can instill a commitment to active participation.
The plan of care should address perceived and real barriers to service and support. Evaluating the family as the whole client will help achieve the goal of maintaining control of the situation at hand. Including out-of-area family members if they wish to be a part of the supportive interventions is also effective. Many adult children live long distances from their family but want to be an integral part of the caregiving process. While being physically present may not be possible, financial support or weekly calls at a specified time can provide much help to the caregiver and the care recipient. Out-of-town family members may have an unrealistic idea of what is needed; including them will not only add additional support, but can help clear up any misconceptions.
Caregivers and families may not recognize the benefits of community supports, nor have the desire or financial resources to use them. The case manager can assist in compiling a list of low- or no-cost services available in the community for respite care, household chores and volunteer services. Reliable sources of support and information can help guide appropriate decision-making. Providing multiple options grants the caregiver choices and helps maintain a sense of accomplishment and independence.
Today’s Caregiver: www.caregiver.com
Caregiver Resource Network: www.caregiverresource.net
Family Caregiver Alliance: www.caregiver.org
National Family Caregivers Association: www.thefamilycaregiver.org
Well Spouse Association: www.wellspouse.org
Eldercare Locator: www.eldercare.gov
National Association of Professional Geriatric Care Managers: www.caremanager.org
Aging With Dignity: www.agingwithdignity.org
Mr. Long-Term Care: www.mrltc.com
The U.S. Administration on Aging: www.aoa.gov
Targets and tactics
Enlist the help of the primary care provider (PCP) for assessments such as physical and occupational therapy for the caregiver, the care recipient, and the home and community environment. Mobility training, assistive devices, occupational safety evaluations, and medication management education are considered a covered benefit with Medicare, Medicaid and private insurers — if deemed medically necessary and if ordered by the PCP or other healthcare provider. Recognizing that it is not always possible to meet the daily needs of a family member on a long-term basis is a concept not easily accepted or considered. Encourage clients to join a caregiver support group either online or in the community. This can create opportunities for sharing ideas, fostering friendships and even trading services with other caregivers.
The case manager can educate the family on the disease process and symptom management while simplifying the daily regimen as much as possible. Understanding the illness, medications, progression and options will allow the family to take logical steps ahead of time with regard to planning for outings, vacations or the future. Being prepared for eventualities is an excellent stress reducer. In a survey of parents of long-term, chronically ill children, 91 percent expressed the need for more information on the disease, treatment and long-term implications to help them evaluate and coordinate planning and interventions. An assessment of educational needs for caregivers should also include information regarding mental incapacity of the elderly or brain-injured family member, stress management for caregivers, nursing home placement, how to communicate with physicians and other professionals, effective communication with family members, the importance of maintaining physical health and well-being, and how to perform vital-sign assessments for themselves and the care recipient.
Hospitals and other community agencies nationwide are now providing, at little or no cost, educational opportunities specifically targeted for caregivers. Researching and compiling these resources for the caregiver — and encouraging attendance — can be an excellent preventive intervention.
In the professional arena, case managers have the ability to help raise awareness of the acute need for support to informal caregivers. Sharing information and resources with colleagues is an important part of keeping abreast of the latest information, and serves to raise collective voices to community leaders and policy makers about the importance of the issue.
Informal caregiving is a vital part of our society. The caregiver must be recognized and supported by communities and the healthcare delivery system. Financial, emotional and hands-on help is needed to prevent caregiver burden and burnout. Case managers can work with individuals to provide the resources needed. With the right supports in place, caregivers will be able to provide competent care to their loved ones without the risk of incurring injury or illness to themselves or those they care for.
About the author
Laura Brumm, MSN, RN, CCM, is a catastrophic nurse case manager with Premera Blue Cross in Seattle, Wash. She became interested in caregiver burden and related healthcare issues while observing physical and mental health disparities in the caregivers of clients. (firstname.lastname@example.org)
About Dorland Health
Dorland Health, an Access Intelligence, LLC Company, is a leading integrated media publisher in the healthcare business information industry. Through a suite of publications, directories, webinars and business information services, Dorland Health is a trusted venue for professionals in care coordination. For more information, visit www.dorlandhealth.com.
For more information about caring for the elderly and caregivers, visit www.nursetogether.com.