Expanded Capacity of African American Family Caregivers: Project C.A.R.E. in North Carolina

1. Expanded Capacity of African American Family Caregivers: Project C.A.R.E. in North Carolina Ishan C. Williams, Ph.D.1,3 & Christopher M. Kelly, Ph.D.2,3 1University of Virginia, School of Nursing, Charlottesville, Virginia 2 University of Nebraska at Omaha, Department of Gerontology, Lincoln, Nebraska 3University of North Carolina, Institute on Aging, Chapel Hill, North Carolina RESULTS BACKGROUND In the United States, over 70% of the 4 million persons diagnosed with Alzheimer’s disease and other dementias are cared for by families. While options for family caregivers have expanded, the need for dementia-specific services remains great. In particular, African American and rural families dealing with dementia are often unable to access resources, due to economic circumstances and cultural isolation. One means for states to deliver dementia-specific services to vulnerable populations is through the use of the Alzheimer’s Disease Demonstration Grants to the States (ADDGS). North Carolina, one of 38 states participating in the ADDGS program, targets underserved rural and minority caregivers through Project C.A.R.E. (Caregiver Alternatives to Running on Empty). Under this program, families can receive up to $2000 annually for services ranging from community-based respite to more comprehensive care (In-home and overnight respite, training and emotional support). Project C.A.R.E. is administered by the North Carolina Division of Aging and Adult Services (DAAS) in cooperation with the Duke University Family Support Program, the Western Carolina Chapter of the Alzheimer’ Association, and the Mecklenburg County Department of Social Services. Services are coordinated by a Family Consultant at each of the program’s three sites (Asheville, Charlotte, and Winston-Salem) Since the program’s inception in 2001, Project C.A.R.E has developed care and support services for families affected by dementia in the African American community. The program utilizes a Family Consultant model to provide personal support, in-home assessment, and links to community resources. Outreach efforts of the Family Consultant to the African American community have provided education and training on Alzheimer’s disease and have built bridges to local church and community groups. • Expanding African American family caregiver capacity • Community outreach, particularly through educational and training programs centered in churches • Culturally relevant and sensitive definitions of dementia and dementia-specific programs • Introduction to Alzheimer’s Association programs, services that may not be readily identified in this community • Clear explanations of what is meant by terms such as “respite”. • Relationship-building among African American family caregivers and service providers • Development of a local infrastructure where none previously existed • Example: area assisted living facilities providing overnight respite as needed • Contacts with advocacy groups and legislative allies to work with African American family caregivers Project C.A.R.E.: Annual Federal Funding and Enrollment, 2001-2006 • METHODS • Face-to-face, semi-structured interviews with the Family Consultant at each Project C.A.R.E. site • Interviews were 30 to 60 minutes in length • Open-ended questions discussing Project C.A.R.E.’s implementation & service delivery; issues raised included: • Use of respite as a portal for other services • Target populations served at each site • Location of the program within an Alzheimer’s Association chapter vs. a county department of social services • Partnerships with service providers, churches & other institutions • Future goals of Project C.A.R.E. • Additional interviews with other informed professionals • Project C.A.R.E. Program Director, NC Division of Aging & Adult Services (DAAS) • Other DAAS personnel • Service providers in Asheville, Winston-Salem, & Charlotte • Director, Duke University Family Support Program • Follow-up interviews with Family Consultants as needed 4Asheville received additional Western Carolina Alzheimer’s Association Region B & C Funding totaling $115,164 during this period CONCLUSIONS Overall, Project C.A.R.E. has fostered the development of a grassroots network of dementia-specific services in communities where help for caregivers had been fragmented and inaccessible. Public and private partnerships such as Project C.A.R.E. are necessary as the number of families affected by dementia continues to grow. Beyond surface differences in service provision, three common themes emerged from interviews with the three Family Consultants: 1) building relationships, 2) use of existing infrastructure, and 3) emerging populations. Derence, K. (2005). This work was supported by the National Institute on Aging and UNC Institute on Aging (T32AG00272) and by the U.S. Administration on Aging