SERVICES FOR CAREGIVERS

The provider of services to the elderly faces many challenges. These challenges can be used as an excuse for not providing service or as an opportunity to design services that are tailored to address these challenges. This begins with the service providers concept of a continuum of care and service; allowing for the uniqueness of each situation to be taken into account, as well as similarities.

A clear solution to the problem would seem to be provision of more training, support groups, and formal in-home services for caregivers. Yet long term effects of such programs have often not been positive. Caregivers tend to remain independent, seeking assistance only when the situation has reached an impossible extreme. Often caregiver programs have not been effective in assisting caregivers before the burnout point is reached. It must be pointed out that much of the caregiver research is based on those caregivers who are stressed to the point of reaching out to the formal system for some form of assistance. Therefore, planners, policy makers and trainers who seek to help caregivers need to analyze the research that is currently available in order to correct the direction of existing programs, develop new ones, and stimulate further research in areas where it appears there is a need for it. Involvement of caregivers themselves in program design is essential.

Creating a system that allows the caregiver maximum freedom and flexibility to enter and leave the support system using those services that they view as useful is key. Caregivers confront not only the caregiving task but also interpersonal ties and traditions. When services are brought into the home they are brought into a culture that is dynamic, changing, and having both strengths and weaknesses. Support should be given in the least restrictive manner. Unfortunately, many services are marketed to the caregiver from a negative point of view. They emphasize the "burden" rather than the caregiving relationship. It is important to allow caregivers to define their experience for themselves. Caregiving can be a burden and at the same time an achievement.

There are Many Opportunities for Creative Programming in Serving Caregivers:

An agency newsletter may have a column allocated for caregivers to use to exchange helpful information.

Educational programs can inform caregivers on how to use services, both private and public, and where to find information and resources.

Libraries and schools can be encouraged to make information available and be on the lookout for resources.

Some agencies have instructional videos available.

Support groups may be formed which encourage caregivers to discuss issues with others who have had similar situations.

Caregivers can be invited to serve on an advisory board which may provide input. Since time to attend meetings may be scarce for a caregiver, allowing for their participation via letter, telephone or conference calls may be necessary.

Service providers may have a concern that caregivers will relinquish their role and thus burden the service delivery system. Perhaps the essential service to be provided is that of consultation so that caregivers have an opportunity to assess their needs, become aware of services available, and be assisted in developing a cohesive plan of care that takes into account both the needs of the caregiver and the care recipient. A study done by the Family Survival Project, San Francisco (Enright & Friss, 1987), found that families who receive help from a resource and assessment agency, do not drop out of care but actually increase their participation while reducing their reliance on formal programs. The report found that the greatest need among caregivers was for respite (occasional relief) and emotional support. Staff most often recommended family consultation and planning to enable caregivers to cope.

Service providers may also be overwhelmed by caregivers, particularly in isolated areas that do not have enough of a population base for a full scale caregiver support program. Service providers may often feel they are not doing enough. It is important to remember that caregivers calling for assistance may be in a siege mentality, responding emotionally and not logically to the challenge of the moment, or exploding from the buildup of pressure. Remember, just having someone who will listen, help them organize their thinking and reassure them is a real service.

Above all, the three most essential actions a Service Provider can Take on Behalf of a Caregiver are:

Listen

Refer - to education/information and resource
persons/services.

Follow-up - supporting the caregiver to express their
own solutions.

REFERENCES:

Brody, E.M. (1985). Parent care as a normative family stress. The Gerontologist, 25, 19-29.

Cantor, M.H. (1983). Strain among caregivers: A study of experience in the United States. The Gerontologist, 23, 597-604.

Cooper, D.P., & Sheehan, N.W. (1987). Family dynamics for caregivers: An educational model. Family Relations, 36, 181-186.

Deimling, G.T., Bass, D., & Jensen, C. (1987). Caregiving for the Elderly: Recognizing Your Strengths and Resources (2nd ed.). [Booklet]. Park Ridge, IL: The Benjamin Rose Institute.

Enright, R.B., & Friss, L. (1987). Employed Caregivers of Brain Impaired Adults: An Assessment of the Dual Role. San Francisco: Family Survival Project.

Jarrett, W.H. (1985). Caregiving within kinship systems: Is affection really necessary? The Gerontologist, 15, 5-10.

Miller, B. (1988). Caregiving differs for husbands and wives. Parent Care 3, 3.

Stoller, E.P., & Pugliesi, K.L. (1989). The transition to the caregiving role: A panel study of helpers of elderly people. Research on Aging, 11, 312-330.

RECOMMENDED READING:

Bane, S.D. (1992). Caregiving for Frail Elders in Rural America. Kansas City, MO:University of Missouri-Kansas City, National Resource Center for Rural Elderly.

Cantor, M.H. (1992). Families and caregiving in an aging society. Generations, 16, 67-70.

Hooyman, N.R., & Lustbader, W. (1986). Taking Care of Your Aging Family Members: A Practical Guide. New York: The Free Press.

The above information has been modified from Mental Health and Aging. Bane, S. D., (1996). p. 108-110. To order please write: National Resource Center for Rural Elderly, UMKC, 5215 Rockhill Road, KCMO 64110-4299, or call:
(816) 235-1747.

RESOURCES:

AARP :
Home page - Information & Research/ Volunteer & Community Programming/ Issues & Advocacy/ About AARP. . .
Get Connected - Connections for Independent Living

Medexplorer - A Health/Medical Internet Search Engine

Q&As of Caregiving - discussion group. By Emily Carton, M.A., L.C.S.W.

To contact site administrator, e-mail: lfitzpatrick@umkc.edu