The Impact of a Dementing Illness on Relatives: The Need for Family Support Groups

Summary

With an estimated 1.5 million people in the United States suffering from a dementing illness, the number of family members who need assistance is at least several million. Families of demented elders have few resources to help them cope with the physical, emotional, and financial impact of the illness. Medicare pays for very few in-home services, and the guidelines for Medicaid assistance in a nursing home are very strict. Families report feelings of isolation, frustration, entrapment, anger, guilt, and fear, even after the elder’s placement out of the home. The needs of families are reflected in the rapid growth of the Alzheimer’s Disease and Related Disorders Association which, since organized in 1979, has developed over 300 family support groups in 26 states. These and other family self-help groups reported in the literature provide emotional support of families, enable families to share practical experience on management of the demented person, and are a means of education regarding dementing illness. A review of these programs is presented as a model for the development of resources for families in the future.