Identification of Existing Resources
In the current health care system in the United States, patients with chronic debilitating diseases are increasingly cared for at home, except for acute medical complications that occur during the disease course. According to the North American ALS CARE Database, 63 percent of patients die at home (Bradley et al., 2002), and thus, informal family caregivers (most often spousal caregivers) become the principal caregivers in this setting. Little psychosocial or medical attention is paid to caregivers. Often caregivers are suffering and mentally distressed from caring for patients. Although there are patient support groups, there may be a limited number and lack of awareness about formal caregiver support groups. Available resources and support programs for caregivers are presented in Appendix B.
Identification of Existing Gaps
Patients and caregivers have high concordance of distress and depression. How caregivers are managing their own care during the end of life of patients with ALS is understudied. Some caregivers do well, despite long days of extensive caregiving, yet others suffer severely from this challenging task. There are no data that assess characteristics of caregivers that might increase their risk of experiencing distress and burden from caregiving. Additionally, there are no studies that systematically evaluate the type of support caregivers may require over the long term in caring for patients with ALS.
Although this initiative focuses on caregiver wellness during the patient's end of life, most practice recommendations are appropriate when initiated in the early stages of the disease.
Recommendations to the Field
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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.