Role of Support Group for the Family Caregiver of Dementia: Recent Developments in the Structure of the Support System

  • Alice Barbara Vickers
Part of the Advances in Experimental Medicine and Biology book series (AEMB, volume 282)


In the last few years there has been a growing interest in self-help and a proliferation of such groups for various reasons. Some are associated with everyday living, such as the Parent and Childbirth Education Society, and others have a special interest, such as the Epilepsy Foundation of America. Some groups are led by peers and others by professionals, some are for parents or siblings and others for people with special needs. Several states and many cities and counties have developed clearinghouses for information about such groups. Many organizations, such as the American Diabetes Association, have developed their own self-help groups and materials on how to do it. The Family Survival Project (FSP) has served the San Francisco area since 1977 with information, support groups and advocacy about chronic brain disorders and head traumas which occur in adults. One of the pioneers of the Alzheimer’s Association was a caregiver, Bobbie Glaze Custer (1), who personally called people all over the country in order to help them with advice and help in establishing groups, thus establishing a network of caring people. She refers to her own personal story as “like a funeral that never ends.”


Support Group Family Caregiver Relate Disorder Association Area Agency Dementia Caregiver 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. 1.
    Glaze, B. (1982). A Never-ending funeral. Generations, 741–52.Google Scholar
  2. 2.
    Barnes, R. F., Raskind, M. A., Scott, M. (1981). Problems of families caring for Alzheimer patients: use of a support group. Journal of American Geriatric Society, 29: 80–89.Google Scholar
  3. 3.
    Gottlieb, B. H. (1983). Social support as a focus for integrative research in psychology. American Psychologist, March: 278–287.Google Scholar
  4. 4.
    Cutler, L. (1985). Counseling caregivers. Generations, 10: 52–57.Google Scholar
  5. 5.
    Gwyther, L. P., Matteson, M. A. (1983). Care for the caregivers. Journal of Gerontological Nursing, 9: 93–116.PubMedGoogle Scholar
  6. 6.
    Rabins, P., Mace, N. Lucas, M. (1982). The impact of dementia on the family. Journal of the American Medical Association, 248: 333–335.PubMedCrossRefGoogle Scholar
  7. 7.
    O’Quin, J. O., McGraw, A. D. (1985). The burdened caregiver: An overview. Senile Dementia of the Alzheimer Type. Edited by Hutton, J. T., Kennedy, A. D. New York: Alan R. Liss.Google Scholar
  8. 8.
    Zarit, S. H., Reever, K. E., Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20: 649–655.PubMedCrossRefGoogle Scholar
  9. 9.
    Scott, J. P., Roberto, K. A., Hutton, J. T. (1985). Family conflicts in caring for the Alzheimer’s patient. Senile Dementia of the Alzheimer Type, Edited by Hutton, J. T., Kennedy, A. D. New York: Alan R. Liss.Google Scholar
  10. 10.
    Easterly, W. (1982). ASSIST: A model program of support. Generations, 7: 44–51.Google Scholar
  11. 11.
    Lombardo, N. (1988). Birth and Evolution in Understanding Alzheimer’s Disease. Edited by Aronson, M. K. New York: Charles Scribner’s Sons.Google Scholar
  12. 12.
    Stone, J. (1982). The self-help movement: Forming a national organization. Generations, 739–40.Google Scholar
  13. 13.
    Alzheimer’s Association Newsletter 8. (1988).Google Scholar
  14. 14.
    Lund, D. A., Caserta, M. S., Wright, S. D. (Nov. 19, 1988 ). Attendance at support group meetings and burden: A national sample of caregivers to dementia victims. 41st Annual Meeting of Gerontological Society of America.Google Scholar
  15. 15.
    Mace, N. L. and Rabins, P. V. (1981). The 36-Hour Day. Baltimore: Johns Hopkins University Press.Google Scholar
  16. 16.
    Gwyther, L. P. (1985). The care of Alzheimer’s patients: A manual for nursing home staff. Chicago: Alzheimer’s Disease and Related Disorders Association and American Health Care Association.Google Scholar
  17. 17.
    Aronson, M. (1988). Understanding Alzheimer’s Disease: What It Is and How to Cope with it. New York: Charles Scribner’s Sons.Google Scholar
  18. 18.
    Cohen, D., Eisdorfer, D. (1986). The Loss of Self. New York: W. W. Norton and Co.Google Scholar
  19. 19.
    Powell, L. S., Courtice, K. (1983). Alzheimer’s Disease: A Guide for Families. Reading, MA.: Addison-Wesley.Google Scholar
  20. 20.
    CLark, N. M., Rakowski, W. (1983). Family caregivers of older adults: Improving helping skills. The Gerontologist, 23: 637–642.PubMedCrossRefGoogle Scholar
  21. 21.
    Haley, W. E., Brown, S. L., Levine, M. A. (1987). Experimental evaluation of the effectiveness of group intervention for dementia caregivers. The Gerontologist, 27: 376–382.PubMedCrossRefGoogle Scholar
  22. 22.
    Kahan, J., Kemp, B., Staples, F. R. (1985). Decreasing the burden in families caring for a relative with a dementing illness. Journal of the American Geriatric Society, 33: 664–670.Google Scholar
  23. 23.
    Wright, S. D., Lund, D. A., Pett, M. A. (1987). The assessment of support group experiences by caregivers of dementia patients. Clinical Gerontologist, 6: 35–59.CrossRefGoogle Scholar
  24. 24.
    Gwyther, L. P. (1983). Caregiver self-help groups: Roles for professionals. Generations, 7: 37–53.Google Scholar
  25. 25.
    Middleton, L. (1984). Alzheimer’s family support groups: A manual for group facilitators. Tampa, Florida: Suncoast Gerontology Center.Google Scholar

Copyright information

© Plenum Press, New York 1990

Authors and Affiliations

  • Alice Barbara Vickers
    • 1
  1. 1.Alzheimer’s Disease and RelatedDisorders AssociationAlbanyUSA

Personalised recommendations