Promoting Excellence : ALS Executive Summary : Caregiver Issues

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Patients with debilitating chronic diseases are increasingly cared for at home. According to the North American ALS CARE Database, 63 percent of patients die at home, and thus, the family becomes the principal caregiver. Recent data indicate that caregivers endure mental distress from caring for patients. Patients and caregivers have high concordance in distress and depression. There are no studies that assess the risk of distress, the burden of caregiving or the support caregivers may require.


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 PromotingExcellence.org for more resources.

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