Regardless of the type and location of long-term care, among those who are assigned to this task, either by choice or by circumstances, caregiver burnout is an all-too-common occurrence. Many factors contribute to long-term caregiver overwhelm and burnout, with results that reverberate far beyond the realm of the caregiver and the person or persons being cared for. In a day when the population of those needing long-term care is on the increase, a serious look at the issue needs addressed, with a view to solutions that provide relief within the ranks of the caregivers, their families, and all who, in the workplace and in the community, are affected by them.
Types of Caregivers
According to the Family Caregiver Alliance, there are two types of caregivers: the informal caregiver, referring to “unpaid individuals such as family members, partners, friends and neighbors who provide care,” on a full time or part time, live-in or live separately, paid or unpaid basis” (FCA 1).
Prevalence of Caregivers
Long-term caregivers are found in a few different capacities and among different populations. According to the FCA, in the U.S.A., “52 million informal and family caregivers provide care to someone aged 20+ who is ill or disabled” (FCA 1). This number does not include those who provide long-term care in a formal setting; revealing that such are comprises a significant portion of the American population. When adding the number of persons vicariously affected by the state of mind and health of the caregiver, the effects of burnout and stress is much greater on the population as a whole. The result is that the need for specific support and guidance of and to the caregiver is crucial not only in a psychological and social sense, but economically.
While the cost of informal caregiving is far less than that of formal care, the effects of caregiver stress on the workplace are significant. Sheel M. Pandya and Barbara Coleman of the AARP Public Policy Institute, report that in a study by the MetLife Insurance Company, the financial impact on businesses due to the effects of caregiving, resulted in a loss to employers of between $11.4 and $29 billion dollars per year (Pandya and Coleman 2). For those involved in informal caregiving in addition to a job in the workforce, the caregiver is, in essence, performing two jobs. Combining problems related to informal caregiving along with typical (or atypical) stresses in the workplace, the impact increases, adding to the necessity for support, guidance, and alternatives for the informal caregiver.
What Is Caregiver Burnout?
Lori Ammon, M.A., L.S.W., lists the following as symptoms of burnout in a caregiver:
- Chronic fatigue – exhaustion, tiredness, a sense of being physically rundown
- Anger at those making demands
- Self-criticism for putting up with demands
- A sense of being besieged
- Exploding easily at seemingly inconsequential things
- Physical symptoms, such as headaches, gastrointestinal problems, weight loss or gain, sleeplessness or depression
- Feelings of cynical detachment
- Feelings of helplessness and ineffectiveness (Ammon, 1).
While these characteristics are given in respect to caregivers in a formal setting, they also apply to family and informal caregivers. Informal caregivers experience added stress that is a part of a the 24-hour, constant vigilance and tasks made necessary, at varying levels and intensity, by caring for someone at home.
Little time for personal, emotional, physical and social care for home caregivers also adds to overwhelm. Changes in relationship between the person cared for and the person giving the care can increase stress. Loneliness and feelings of alienation are common. Neglect of financial duties can ensue, with the constant need for vigilance in respect to insurance and medication needs. Alcohol or drug abuse may result.
Coping With Stress
In a society where the need for long-term care will most likely increase along with the population of those who will require care, the solutions and assistance are, unfortunately, negatively proportional to the need. Informal care has increased due to the rising costs of formal care in nursing homes and intensive long-term facilities. At the same time, those who are providing care in formal settings, are experiencing added stress when feeling the impact of low wages.
Nevertheless, the increase and expansion of wisdom, experience and knowledge is helping to provide additional ideas as to how caregiver burnout can be prevented or addressed. A specific example of relief for caregivers is revealed in the presence in many communities of adult daycare centers. These provide caregivers with as many hours of relief needed for attendance to personal needs, social interaction, and financial affairs. For some, a useful combination of hired nursing or simple companionship and personal home care serves as a beneficial alternative.
An educational brochure published by Craig Hospital offers information on the struggles of the informal caregiver, as well as options for their relief. Relief options include the following:
- The recruitment of additional help. Sometimes it is simply a matter of asking a friend or family member to provide an hour or two of “sitting” that requires a minimal amount of specialized or difficult work. The caregiver can also attend to the more difficult tasks prior to leaving the assistant alone with the person being cared for. Formal, professional caregiving services can be hired as well. Having more than one alternate caregiver available for resourcing can be advantageous in the event that another person is not capable of assisting (Craig Hospital 1).
- Support groups. In every community, there are more informal caregivers than might be known. Finding and/or forming a support group is more than worthwhile for the sharing of concerns and emotions related to caregiving, with a potential for including educational events that assist in the streamlining of caregiving activities.
- Improving the relationship with the person being cared for. A person being cared for can sometimes be demanding or unresponsive to the caregiver’s needs. Communication between the two persons involved – discussing and sharing problems and emotions, cannot be emphasized enough. Formal counseling or the recruitment of assistance by a clergyperson or trusted friend might be required (Craig Hospital 1).
- Cultivate friendships. The caregiver can invite family and friends to his/her home, or ask someone to run an errand or bring in a meal. Even brief moments of contact with the “outside world” can bring a bit of relief (Craig Hospital 1).
- Use innovative ideas and resources. A caregiver can utilize the assistance of other caregivers by swapping responsibilities with other caregivers when possible. They can share the alternative caregivers with others, perhaps by contact with other caregivers in order to develop a caregiver resource list. Use of long-term care trainees, or students needing experience in caregiving or a low-paid supplement to their education, are likely candidates as alternative, temporary caregivers (Craig Hospital 1).
- Recruit help for financial responsibilities. Students involved in training for professions involving finance or high school students looking for an internship might be available. Hiring out assistance may well be worth the price for a caregiver (Craig Hospital 1).
- Additional personal care. A trusted counselor or friend, paid or unpaid, can provide the caregiver with an effective sounding board, with a non-judgmental validation of the caregiver’s feelings and experiences, and assist the caregiver by providing an objective view of a situation in which the caregiver finds him or herself very deeply embroiled, and assist the caregiver when dealing with natural feelings of guilt when a caregiver believes he or she is not able to care for their loved one adequately (Craig Hospital 1).
It is important for society, in many institutions, from educational to charitable to social to religious to the workplace and beyond, be educated and prepared for the future needs for increasing long-term care, and thus for the needs of individuals who are giving it. Just as society has offered innovative technical advances, so also does society need to create and innovate in the development of systems that bring health and increasing functionality into the long-term care system, both formal and informal. It is entirely possible.
Ammon, Lori, MA, LSW, “Burnout In Long-Term Care Social Work: Unique Features”,
“Long-term Care Givers: For Better and For Worse,” Educational Brochure, Craig Hospital, <http://www.craighospital.org/SCI/METS/longtermCareGivers.asp>.
Panda, Sheel and Coleman, Barbara, “Caregiving and Long-Term Care Fact Sheet,” AARP
Public Policy Institute, December, 2000, <http://www.aarp.org/research/housing- mobility/caregiving/aresearch-import-685-FS82.html>.
“What Is Long-Term Care?”, Fact Sheet : Selected Long-Term Care Statistics, Family Caregiver Alliance, 2001, <http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=440>.