Promoting Excellence : ALS Report to the Field : Caregiver Issues


аи Executive Summary
аиаReport to the Field

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

Practice Recommendations

  • Interview experienced caregivers to identify psychosocial issues that must be addressed.
  • Establish support services for caregivers including psychiatric guidance and counseling, support groups that emphasize educational initiatives, hands-on training programs and wellness-promoting behaviors.
  • Develop a crisis management system for caregivers in ALS clinics, including an ALS caregiver telephone hotline available 24 hours per day.
  • Make spiritual education training and intensive psychosocial support readily available (including home visits), and offer these services to all caregivers during the end-of-life period.

Research Recommendations

  • Study whether proactive intensive psychosocial care reduces caregiver burden and distress, enhances caregiver wellness and improves the quality of life of patients.
  • Develop an instrument that can quantify caregiver burden and distress.
  • Study the medical economics of family caregiving, and expand the evidence base for supporting insurance reimbursement for family caregiver costs.

Policy Recommendations

  • Reimburse the cost incurred by physicians who provide supportive care for caregivers.
  • Using organized lobbying approaches, improve financial support and reimbursement for the costs assumed in caring for patients with ALS during the end of life (e.g., Medicare reimbursement).
  • Improve financial/insurance coverage for psychosocial intervention in the home. Encourage hospices to provide universal social work coverage for all families (current policies allow nursing support to families, but many hospices assign social work coverage only to those families deemed at particular risk and do not provide counseling to the majority of caregivers).

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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 for more resources.

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