Empowering Family Caregivers
Social Work Today
By Daniel Kuhn, MSW
Vol. 4 No. 3 p. 38

Caring for a relative can be a meaningful and rewarding experience, but it is also known to be stressful. Negative outcomes associated with family caregiving are well-documented. The caregiver role has been linked with a variety of physical and mental health problems, as well as an increased risk of mortality (Schultz & Beach, 1999). Families who provide care need help.

Caregivers often neglect their own needs in favor of addressing the needs of their care recipients. This imbalance is at the heart of poor outcomes associated with caregiving. Therefore, one of the most important ways to help family caregivers is to enable them to take proper care of themselves. What can be done to restore balance to the lives of caregivers? Can caregivers learn to care for themselves while caring for others?

The federal government plays a limited yet growing role in assisting family caregivers. For example, the National Family Caregiver Support Program was authorized by the Older Americans Act of 2000 and will fund services for family caregivers totaling $160 million in fiscal year 2004. Most funds are allocated to states through a congressionally mandated formula that is based on a proportionate share of the 70-plus population. The program calls for all states, working in partnership with local area agencies and tribal organizations, to offer a core of five direct services:
• information to caregivers about available services;
• assistance to caregivers in gaining access to supportive services;
• individual counseling, support groups, and training to assist caregivers in making decisions and solving problems relating to their roles;
• respite care to enable caregivers to be temporarily relieved from their caregiving responsibilities; and
• supplemental services to complement the care provided by caregivers.

What Helps Caregivers?
Research on caregiving has focused mainly on the consequences of caregiving, such as stress, effects on health, and costs. New research has enhanced understanding of the effectiveness of a variety of interventions. For example:
• Adult day services can significantly reduce caregivers’ distress if services are secured early in the caregiving trajectory (Zarit et al., 1998).
• Training can increase caregivers’ knowledge, effectiveness in solving problems, and feelings of competence and reduce depression (Kuhn & Fulton, 2004, in press; Toseland et al., 2001).
• Counseling and support for caregivers of persons with Alzheimer’s disease can delay admission of the care recipient to a nursing home for up to one year (Mittelman et al., 1996).

Research also reveals that how a caregiver appraises his or her situation is a strong predictor of outcomes (Noonan & Tennstedt, 1997). For example, caregivers who are open to learning new skills tend to do well, whereas those who do not adapt to changes tend to suffer negative consequences. Cognitive restructuring and reframing are social work interventions aimed at this interpersonal level.

Self-Help Tools for Caregivers
Social workers seek to enhance the capacity of people to address their own needs. Self-efficacy increases the likelihood that certain tasks, particularly health-promoting behaviors, will be performed successfully. Self-efficacy is related to one’s belief that new attitudes and behaviors can be learned and achieved. Enhancing self-efficacy of patients with chronic disease has been demonstrated as an effective approach to improving health and well-being.

To appeal to caregivers’ need for self-care, it is best to begin with their basic desire to provide the best possible care to their loved ones. I ask them to recall the flight attendant’s instructions to airline passengers before takeoff: “Place the oxygen mask on yourself before assisting someone else.” Caring for another is inextricably tied to caring for oneself.

There is no single recipe for ensuring that one is a healthy caregiver. I advise caregivers that the following 10 steps can enhance their self-efficacy:
1. Educate yourself about the disease or medical condition.
2. Find a doctor who understands the medical condition.
3. Consult with experts such as attorneys and financial planners.
4. Tap your social resources.
5. Find a confidante.
6. Take time for relaxation and exercise.
7. Use community resources.
8. Maintain your sense of humor.
9. Explore religious beliefs and spiritual values.
10. Set realistic goals.

To begin to implement these ideas, it is helpful to develop a personalized action plan. This difficult first step is central to the success of Powerful Tools for Caregivers (PTC), a scripted curriculum that is built upon the principles of self-efficacy. PTC is now being used in at least 10 states and is disseminated nationally by Mather LifeWays in Evanston, IL. In six classes, family caregivers develop a wealth of self-care tools. For example, caregivers learn and rehearse changing “You” messages into “I” message to effectively communicate their thoughts and feelings. They enact plans to take time for themselves without feeling guilty.

After taking part in PTC, spouses and adult children report significant improvements on all outcome measures, especially participation in relaxation activities and physical exercise. Most of these gains in physical and mental health are sustained six months later. For further information about PTC, visit www.tools4caregivers.com

Social workers in a variety of settings encounter family caregivers with diverse needs. Information and referral, skills training, respite services, individual and family counseling, and support groups can enable caregivers to better care for themselves while caring for loved ones. Careful assessment of each caregiver’s situation is first needed to determine which services will be most effective. Services that enable caregivers to balance their complex roles and responsibilities will help both them and their care recipients. However, empowering caregivers to identify and use their strengths will lead to lasting positive changes in their attitudes and behavior.

— Daniel Kuhn, MSW, is director of education at Mather Institute on Aging, a division of Mather LifeWays in Evanston, IL. He has authored more than 30 publications including Alzheimer’s Early Stages: First Steps for Families, Friends and Care-Givers, 2nd edition (Hunter House Publishers, 2003).

References
Kuhn, D., & Fulton, B. R. (2004, in press). Efficacy of an educational program for relatives of persons in the early stages of Alzheimer’s disease. Journal of Gerontological Social Work, 41(1).
Mittelman, M. S., Ferris, S. H., Shulman, E., Steinberg G., & Levin B. (1996). A family intervention to delay nursing home placement of patients with Alzheimer disease. Journal of the American Medical Association, 276(21), 1756-1757.
Noonan, A. E., & Tennstedt, S. L. (1997). Positive aspects of caregiving and its contribution to caregiver well-being. The Gerontologist, 37, 785-794.
Schultz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. Journal of the American Medical Association, 282(23), 2215-2219.
Toseland, R. W., McCallion, P., Smith, T., Huck, S., Bourgeois P., & Garstka T. A. (2001). Health education groups for caregivers in an HMO. Journal of Clinical Psychology, 57(4), 551-570.
Zarit, S. H., Stephens, M. A., Townsend, A., & Greene, R. (1998). Stress reduction for family caregivers: Effects of adult day care use. Journals of Gerontology: Psychological Sciences and Social Sciences, 53B (5), S267-S277.