Caregivers Count Too! Section 4: FCA Resources on Caregiver Assessment

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Family Caregiver Alliance (2006). Caregiver Assessment: Principles, Guidelines and Strategies for Change. Report from a National Consensus Development Conference (Vol. I). San Francisco: Author.

Reflects the professional consensus achieved at the National Consensus Development Conference for Caregiver Assessment: the importance to policy and practice of systematically assessing a caregiver’s own needs in health care and in home and community settings; fundamental principles and practice guidelines for caregiver assessment applicable to a range of practitioners in a variety of settings; and strategies and actions to advance caregiver assessment as a basic component of practice.

Family Caregiver Alliance (2006). Caregiver Assessment: Voices and Views from the Field. Report from a National Consensus Development Conference (Vol. II). San Francisco: Author.

Provides two personal accounts of the family caregiving experience and four background papers on the topic of caregiver assessment from a research, practice, policy and international perspective. Together they portray key issues in caregiver assessment and illustrate the impact of caregiving at home on the family members who provide the care and support.

Family Caregiver Alliance (2002).  Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners. San Francisco, CA: Author.

Represents a select group of caregiver assessment measures specifically chosen for practical application by practitioners who work with family and informal caregivers of older persons and adults with disabilities. The purpose of the inventory is to provide a compendium of caregiver assessment measures that is practice-oriented, practical and applicable, and which conceptually addresses the multidimensional aspects of the caregiving experience. The inventory compiles over 100 measures into a user-friendly table that is organized into six conceptual domains: positive and negative effects of caregiving, care tasks and skills, caregiver health, financial impact of caregiving, caregiver social support, and caregiver values and preferences.

Feinberg, L.F. (2004).  The State of the Art: Caregiver Assessment in Practice Settings. San Francisco, CA: Family Caregiver Alliance.

Summarizes the reasons for assessing family caregivers and identifies what, whom, when and where to assess. In addition, the monograh explores commonalities as well as differences in caregiver assessment instruments and points out areas of caregiver assessment that have been neglected. The report also discusses training issues for practitioners.

Feinberg, L.F., Newman, S., Gray, L., Kolb, K. & Fox-Grage, W. (2004).  The State of the States in Family Caregiver Support: A 50-State Study. San Francisco, CA: Family Caregiver Alliance.

The first national study to examine publicly funded caregiver support programs throughout all 50 states. It focuses on caregiver support provided through the Older American Act’s National Family Caregiver Support Program (NFCSP), Aged/Disabled Medicaid waiver programs, and state funded programs. The study found that about one-fourth of the states use a uniform assessment tool for all HCBS programs for the elderly and adults with disabilities. Systematic assessment of family caregivers was found to be  a component in just five states’ uniform assessment protocols.

Feinberg, L.F., & Newman, S. (2002).  Family Caregiver Support: Policies, Perceptions, and Practices in 10 States Since the Passage of the National Family Caregiver Support Program. San Francisco, CA: Family Caregiver Alliance.

Describes the preliminary experiences of 10 states in providing support services to family or informal caregivers of the elderly and adults with disabilities focusing on the National Family Caregiver Support Program, state general funds, Medicaid-waiver programs, and other state-funding streams. State and local implementation of caregiver assessment policies, tools and procedures under the NFCSP were found to be at very different stages. At the time, Pennsylvania and Florida were the only case-study states that utilized a consistent assessment instrument including a caregiver component for all HCBS programs.

Feinberg, L.F., Wolkwitz, K. & Goldstein, C. (2006).  Ahead of the Curve: Emerging Trends and Practices in Family Caregiver Support. Washington, DC: AARP Public Policy Institute.

This report highlights three emerging trends that have important implications for addressing the needs of family caregivers: caregiver assessment; consumer direction in family caregiver support services; and collaborations between the aging network and the health care system, for example, in identifying family caregivers who may be at risk for their own health problems and emotional strain associated with the caregiving role. The report addresses barriers to conducting assessments of caregiver needs, new directions, and the outcomes or benefits of conducting caregiver assessments.  Results suggest that the concept of a single, universal assessment tool for long-term care clients, including family caregivers, is gaining attention in a number of states.


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