Groundbreaking Report on Assessment of Family Caregivers

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FCA’s National Center on Caregiving has released a groundbreaking report on caregiver assessment. The report states that a fundamental change of thinking in policy and practice is needed to establish the assessment of caregivers as a basic component of practice across care settings (home, hospitals, physician offices and community-based programs).

Families provide approximately 80% of the long-term care in this country—the equivalent of 306 billion dollars’ worth. Assessment confers formal recognition of these families, who care for loved ones with chronic or debilitating health conditions.

While systematic assessment of individuals suffering from chronic or disabling conditions now occurs routinely in medical, health and social service settings, assessment of their family caregivers’ needs is rare. A large and growing body of research shows that family members who provide long-term care at home are themselves at risk for physical, emotional and financial problems associated with the caregiving role.

Reaching Consensus on Assessment

Last September, 54 nationally recognized experts in caregiving, health and long-term care issues—scholars, practitioners and public officials—attended an intensive two-day conference in San Francisco convened by the National Center on Caregiving at FCA. They sought to create a consensus and a catalyst for change at federal, state and local levels, to strengthen support for caregiving families and to improve quality of care for frail elders and adults with disabilities. According to Lynn Friss Feinberg, director of this project and the deputy director of the National Center on Caregiving, the expectations were far exceeded.

“We hope the wide dissemination of the report will encourage the adoption of these consensus principles and practice guidelines, and serve to stimulate change to heighten recognition of the growing needs of caregiving families across the country,” she said.

The report is comprised of two volumes. Volume I, Caregiver Assessment: Principles and Strategies for Change, reflects the professional consensus achieved at the conference:

  • Recognition of the importance of systematically assessing a caregiver’s own needs, as part of policy and practice in health care and in home and community-based settings.
  • Consensus on fundamental principles and practice guidelines that apply to a range of practitioners, providers and care managers in a variety of settings.
  • Identification of change strategies and actions to advance caregiver assessment as a basic component of practice.
  • Heightened interest among the invited leaders to take steps to promote caregiver assessment.

Volume II, Caregiver Assessment: Voices and Views from the Field, provides four background papers commissioned for the conference and two personal accounts. Together they portray key issues in caregiver assessment and illustrate the direct and powerful consequences of caregiving at home on the family members who provide the care and support.

The Robert Wood Johnson Foundation provided the primary financial support for the project, with additional support from the Archstone Foundation and The California Endowment.

Both volumes are available online at no charge at, or as printed reports, available for $25 each from Family Caregiver Alliance. A third publication, a Toolkit for practitioners, will be released later this spring. For more information, contact Lynn Friss Feinberg at FCA, (800) 445-8106.

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