FCRP Policy Statement

In her book Helping Yourself Help Others, former First Lady Rosalyn Carter uses her years of personal and political experience in the area of mental health and caregiving to draw attention to the issues faced by individuals providing care to family members with physical or mental illnesses. The book uses personal anecdotes and the results of studies conducted by the West Central Georgia Caregivers Network (CARE-NET) to describe the issues confronting family caregivers and to offer public policy recommendations.

Characteristics of CARE-NET Caregivers

• 80% of all informal caregivers were women and 61% were married
• Over 30% had been caregiving for over ten years; 41% spent more than forty hours a week providing care.
• While 90% worked outside of the home, 30% missed one month or more of work due to caregiving.
• 75% provided most or all care to their loved one. While 50% turned most to family for help, 65% received little or no help from them. Only 16% sought help most often from the formal care system.
• 50% of the caregivers reported that they were probably experiencing burnout.

The CARE-NET study, like others before it, shows that family caregiving is widespread, that these care activities are time-consuming and demanding, and that family caregivers have needs that are not currently being addressed by their families or the formal health care system.

Policy Recommendations

• Strengthen relationships between formal and family caregivers.
  According to Ms. Carter, a caregiver "in general, is one who provides assistance to a person to help him or her feel better about, cope with, or cure a physical or mental health problem," regardless of whether or not they receive financial compensation. Stronger, more cooperative relationships between formal and family caregivers are in the best interest of patients, caregivers, and the health care system. She recommends that "more time be sought for professionals to spend with those receiving care and family caregivers. The customary approach is to seek funds to hire more staff. An alternative would be to relieve professionals of some unnecessary paperwork, which would allow more time with clients. This change would require top-level [policy] decisions regarding priorities by agency administration and perhaps legislative bodies."
• Increase public and professional awareness of the role of family/informal caregivers.
  The importance of family/informal caregivers' role in patient care, the emotional and physical consequences of caregiving and caregivers' need for advice, assistance, and support all need to be more widely understood and accepted. This could be accomplished through national, state, and local public awareness campaigns. Academic institutions could also help increase awareness by offering continuing educations programs geared towards family caregivers and by adding discussion of informal caregiving to the curricula of programs such as nursing, counseling, social work, medicine, public health, and public policy.
• Provide resources for family/informal caregivers.
  Programs have been developed to assist family caregivers but they are not yet widespread, comprehensive, or supported by public policy. Programs which could be established at the local level (with federal, state, local, or private funds) include the following:
  • Training programs to teach family caregivers the basic knowledge and skills they need to provide care.
  • Support groups to give family caregivers opportunities for peer support and interaction as well as communication and collaboration with professional caregivers.
  • Community resource consultants to link family caregivers with resources available in their community.
  • Limited, short-term financial grants to help family caregivers with expenses, such as medical equipment or respite care, generally not covered by public assistance or private health insurance or for families that "fall through the cracks" in meeting eligibility requirements for major assistance programs.

From Carter R. and Golant S.K. (1994). Helping yourself help others. New York, NY: Times Books. Prepared by the "Rural Partnership Linkage for Cancer Care" (Grant # R01CA56638 from the National Cancer Institute); a collaborative effort of the MSU Colleges of Nursing and Human Medicine, Dept. of Family Practice, the Cancer Center at MSU, the W. Michigan Cancer Center, and the MSU/Kalamazoo Center for Medical Studies; Charles W. Given, Ph.D., Principal Investigator.