What Makes A Caregiver Program Effective?

Programs that have been demonstrated to help caregivers under "real world conditions" are said to be effective. Generally, this means taking a program that has been rigorously tested under controlled conditions and implementing it successfully in a community agency. If the program as adopted demonstrates the ability to improve caregiver knowledge, skills, morale and health, and/or reduce depression, injury, ill-health and social isolation when provided in the community to caregivers, it is said to be "effective". Effectiveness, then, is the ultimate measure of whether a program "works" to help caregivers. Even the best evidence-based program may not be effective if it is poorly implemented, if staff are not properly trained, if the program varies too much from the original design and so on.

Effective programs appear to share several characteristics. Specifically, the following factors have been associated with the most positive outcomes for family caregivers. These factors should be carefully studied and built into efforts to support family caregivers:

  1. Contact with a helper over time, (NINR, 2001; Teri, 1999; Thompson & Gallagher-Thompson, 1996.)
  2. Contact with a helper who has specific intervention protocols to follow (Schulz, 2000; Schulz, Gallagher-Thompson, Haley, & Czaja, 2000)
  3. Interventions and care plans tailored to the caregiver’s specific needs (Chwalisz, 1996, Mittelman, Roth, Coon, and Haley, 2004; Schulz, Gallagher-Thompson, Haley, & Czaja, 2000),
  4. Multi-component interventions that include a combination of knowledge, skill building, problem solving and counseling (Carnevale, Anselmi, Busichio, & Millis, 2002; Grant, Elliott, Giger, & Bartolucci, 2001; Paun, Farran, Perraud, & Loukissa, 2004; Query & Wright, 2003; Schulz, Martire & Klinger, 2005).
  5. Interventions with higher intensity (e.g. greater frequency and duration) (Schulz et. al. 2005)
  6. Using a combination of home-visiting, telephone follow-up, internet and telehealth technology to deliver, (Davis, Burgio, Buckwalter, & Weaver, 2004; Eisdorfer et al., 2003; Mahoney, Tarlow, & Jones, 2003; NINR, 2001) and,
  7. Programs developed and implemented locally and involving agency collaboration (Falicreek, 2003; Tremethick et. al. 2004; Wilken, Tremethick, Walker, & Meier, 1999).

Evidence-based interventions are those that have a documented record of positive outcomes for caregivers. Not all evidence based interventions are effective in practice because of poor implementation, poor staff training, and other factors. Read more about evidence-based interventions.

References

Carnevale, G. J., Anselmi, V., Busichio, K., & Millis, S. R. (2002). Changes in ratings of caregiver burden following a community-based behavior management program for persons with traumatic brain injury. Journal of Head Trauma Rehabilitation, 17(2), 83-95.

Chwalisz, K. (1996). The perceived stress model of caregiver burden: Evidence from spouses of persons with brain injuries. Rehabilitation Psychology, 41(2), 91-114.

Davis, L., Burgio, L. Buckwalter, K. & Weaver, M. (2004). A comparison of in-home and telephone-based skill training interventions with caregivers of persons with dementia. Journal of Mental Health & Aging, 10(1). 31-44.

Falicreek, S. J. (2003). Older adult health promotion in rural settings. Journal of Gerontological Social Work, 41(3/4), 193-212.

Grant, J. S., Elliott, T. R., Giger, J. N., & Bartolucci, A. A. (2001). Social problem-solving abilities, social support, and adjustment among family caregivers of individuals with a stroke. Rehabilitation Psychology, 46(1), 44-57.

Mittelman, M. S., Roth, D. L., Coon, D. W., & Haley, W. E. (2004). Sustained benefit of supportive intervention for depressive symptoms in caregivers of patient’s with Alzheimer’s Disease. American Journal of Psychiatry, 161(5), 850-856

National Institute of Nursing Research. (2001). Research in informal caregiving: State of the science workgroup meeting executive summary. Retrieved March 31, 2007, from

Paun, O., Farran, C., Perraud, S., & Loukissa, D. (2004). Successful caregiving of persons with Alzheimer’s disease: Skill development over time [Electronic version].Alzheimer’s Care Quarterly, 5(3), 241-251.

Query, J. L., Jr., & Wright, K. (2003). Assessing communication competence in an online study: Toward informing subsequent interventions among older adults with cancer, their lay caregivers, and peers. Health Communication, 15(2), 203-218.

Schulz, R. (2000). Handbook on dementia caregiving: Evidence-based interventions for family caregivers. New York, NY, US: Springer

Schulz, R., Gallagher-Thompson, D., Haley, W., & Czaja, S. (2000). Understanding the interventions process: A theoretical/conceptual framework for intervention approaches to caregiving. In R. Schulz (Ed.), Handbook on dementia caregiving: Evidence-based intervention for family caregivers (pp. 33-60). New York: Springer

Schultz, R., Martire, LM, & J.N. Klinger (2005) Evidence-based Caregiver Interventions in Geriatric Psychiatry. Psychiatric Clinics of North America, 28 (2005), 1007-1038.

Tremethick, M. J., Wilken, C., Miller, R., Walker, K., & Meier, P. (2004). The PATH Program: Meeting health promotion needs of older adults. The Southwest Journal on Aging, 19, 25-32.

Teri, L. (1999). Training families to provide care: Effects on people with dementia. International Journal of Geriatric Psychiatry, 14, 110-119.

Thompson, L. W., & Gallagher-Thompson, D. (1996). Practical issues related to maintenance of mental health and positive well-being in family caregivers. In L. L. Carstensen & B. A. Edelstein (Eds.), The practical handbook of clinical gerontology (pp. 129-150). Thousand Oaks, CA: Sage

Wilken, C., Tremethick, M., Walker, K., & Meier, P. (1999). Community coalitions: Foundations for success in health promotion for older adults. Journal of Family and Consumer Sciences, 91(4), 83-87.