The Family Caregiver Alliance held the National Consensus Development Conference for Caregiver Assessment in San Francisco, September 7–9, 2005. The Family Caregiver Alliance, a nonprofit based in San Francisco, was founded in 1977 to address the needs of people who provide long-term care at home for family members and friends.

Research shows that family members who provide care to persons with chronic or disabling conditions are themselves at risk for physical, emotional and financial problems, according to the Family Caregiver Alliance. However, assessment of family caregivers' needs is rare.

Key Results

• Project staff commissioned four papers to guide discussions at the conference:
  • "Assessment of Family Caregivers: A Practice Perspective."
  • "Assessment of Family Caregivers: A Public Policy Perspective."
  • "Assessment of Family Caregivers: An International Comparison Across Six Countries."
  • "Assessment of Family Caregivers: A Research Perspective."
• An advisory committee composed of experts in caregiving, health and long-term care issues guided the project. (See Appendix.)
• Some 54 stakeholders and recognized experts in care giving, health and long-term care issues attended the conference.
• Participants agreed on fundamental principles and practice guidelines for caregiver assessment. These were summarized in a two-volume report and a toolkit:
  • Volume I, Principles, Guidelines and Strategies for Change, outlines fundamental principles and practice guidelines that apply to a range of caregivers in a variety of settings. (Available online.)
  • Volume II, Voices and Views from the Field, provides four background papers commissioned for the conference and two personal accounts by people who provide care and support for a family member. (Available online.)
  • An online toolkit for health care practitioners, Caregivers Count Too! It provides practical guidelines and tools for assessing the needs of caregivers.
• Conference participants reached agreement on the importance of promoting a systematic assessment of caregivers' needs. A post-conference survey indicated that:
  • The great majority (84 percent) of respondents said they were motivated to take steps to promote caregiver assessment.
  • More than three out of four (78 percent) wanted to participate in follow-up activities of the project.
• According to the project director, the conference was the first-ever national consensus conference on developing guidelines for assessing the needs of family caregivers.

Communications

As of May 2007, the project director, conference participants and advisory group members had made 13 presentations around the country and planned others.

Funding

The Robert Wood Johnson Foundation (RWJF) provided partial funding of $265,000 for this solicited project from December 2004 through August 2006. Other funders included the Archstone Foundation ($50,000) and the California Endowment ($15,000).

In an earlier project funded by RWJF (see Program Results on ID#s 040305 and 047515), experts in the field of family caregiving produced recommendations designed to spur the development of more accurate measures of the work performed by family caregivers.

After the Program

The National Guideline Clearinghouse in the federal Agency for Health Care Research and Quality accepted the consensus recommendations and has posted them online.

The Centers for Medicare & Medicaid Services (CMS) in the U.S. Department of Health and Human Services has issued a Real Choice Systems Change Program opportunity in the Medicaid program for states to develop and formally institute a caregiver assessment and intervention process for the consumers' informal support system.

For technical assistance to the states, the grant solicitation references the three reports prepared by Family Caregiver Alliance following the National Consensus Development Conference for Caregiver Assessment.

Project staff also continued to work with states and provider agencies seeking to implement the caregiver guidelines.