Academic journal article Generations

Promoting Consumer Direction for Family Caregiver Support: An Agency-Driven Model

Academic journal article Generations

Promoting Consumer Direction for Family Caregiver Support: An Agency-Driven Model

Article excerpt

You probably know someone like Judy Smith. She is 53, married, has two teenage children at home, and has a career as an architect. A year ago, her widowed mother moved into her home after being diagnosed with Parkinson's disease and dementia. At that time, Judy was forced to give up a challenging project in her firm because it would have required her to travel three days a month. Since her mother needed constant care, Judy was no longer able to attend business meetings at night; her days and nights were very demanding and stressful for her and her family because of her caregiving role. She was becoming increasingly exhausted and took an unpaid leave of absence from her job, resulting in considerable financial hardship to her family. Her mother's physician suggested that Judy consider placing her mother in a nursing home-not what she or her mother wanted. The prospect was heartwrenching and an economic nightmare. Fortunately, a friend told her about a Caregiver Resource Center in her community. Over the next four months, the center's family consultant provided Judy with information about the course of the disease and behavior management strategies, arranged for a family meeting to discuss care options, set up a legal consultation with an attorney to consider powers of attorney and other legal matters, held six counseling sessions with Judy to deal with her frustration, confusion, and sense of loss, and offered her several respite care options to consider. Judy elected respite assistance whereby financial support from the Caregiver Resource Center enabled her mother to attend an adult daycare program four days a week. A family friend provided respite relief on Fridays. With this support and respite assistance, Judy was able to return to work and continue caring for her mother at home. She now has more knowledge about Parkinson's disease and dementia, feels more confident in her caregiving role, is better able to deal with her mother's behavioral and functional problems, and is grateful for the respite relief and financial assistance to offset the costs of care. She keeps in touch with the center's family consultant as problems arise or decisions need to be made.

BACKGROUND AND HISTORY

In I977, a small task force of families and community leaders in San Francisco came together to create support services for family members struggling to care for people who did not fit into traditional mental health or aging systems, such as adults with Alzheimer's disease, Parkinson's disease, stroke, traumatic brain injury, and other brain diseases and disorders. The diagnoses were different, but the family caregivers shared common concerns and challenges: isolation, emotional distress, lack of information and community resources, and drastic changes in family roles. The task force's early efforts had three lasting results: the formation of the Family Caregiver Alliance (formerly Family Survival Project), the creation of a statewide system of Caregiver Resource Centers, and the beginnings of a consumer movement to recognize the immense contributions of family caregivers to the long-term care of adults with cognitive impairment in the United States.

Two family caregivers were instrumental in these efforts: Anne Bashkiroff and Suzanne Harris. They were caring for their husbands who had dementing illnesses, and both realized that there must be many families who were too overwhelmed to make their needs known. The dedicated efforts of these two women resulted in the passage of two California laws. The first (Chapter I058, Statutes of I979) developed a model program of information, education, and support services for family caregivers of cognitively impaired adults. Under the administration of the California Department of Mental Health, Family Caregiver Alliance (FCA) carried out a pilot project for three years in the San Francisco Bay Area. Based on the success of the pilot project, in 1984 the second law (Chapter 1658, Statutes of 1984, as amended by Chapter 775, Statutes of 1988) was enacted to replicate throughout California the model caregiver support program developed and piloted by the founding families of FCA. …

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