As North Carolina’s population ages, an increasing number of elderly individuals will need long-term care. Fortunately, a variety of options are available for older adults, including nursing homes, assisted living, and home- and community-based resources. This issue of the NCMJ also covers topics such as fall prevention, advance care planning, caregiver support, adaptive leadership and person-directed care, and behavioral interventions for dementia.
A North Carolina Service for Those With Questions About Alzheimer Disease, Other Memory Disorders, and Family Care
The Duke Family Support Program (DFSP) is a service for North Carolina families and professionals who are caring for someone with a memory disorder. The program offers telephone and e-mail consultations, clearinghouse services, and education to North Carolina professionals, family members, and friends caring for any adult with declines in memory. The DFSP has been answering questions about dementia since 1979—long before there were daily headlines about brain health and celebrity testimonials about the effects of Alzheimer disease on families.
Duke’s original Alzheimer disease evening support group has been meeting monthly since 1979. The program was started to address the needs of a group of families of people with early-onset Alzheimer disease, many of whom were participating in the first federally funded study of Alzheimer disease at Duke University. These family members were frightened, exhausted, and alone, and they were eager to learn from others facing similar challenges and to hear from credible and interested professionals. This open, community-based group offers practical consumer information, coping tips, and opportunities for families to connect and learn that they are not alone.
DFSP social workers also facilitate 3 other groups for individuals with memory disorders and their families. With leadership from DFSP social workers, the Bryan Alzheimer’s Disease Research Center sponsors the Cary and Ruth Henderson Person with Dementia and Care Partner Support Group, which is named to honor the original participants. This couples group has been meeting monthly since 1992. A second group is the Daughters Concerned for Aging Relatives. This monthly support group has been meeting since 1996 and draws Triangle-area adult daughters, daughter-in-laws, and granddaughters, who share problem-solving approaches as well as laughter, tears, chocolate, and knowledge. Finally, the Early-Stage Alzheimer’s Education and Support Group is the DFSP’s newest initiative, now going into its third year. Serving individuals with a recent dementia diagnosis and their care partners, this evidence-based program is a partnership between Duke University, Jewish Family Services, and the Alzheimer’s Association. This program has so far offered educational, emotional, and social support—3 hours a week for 8 weeks—for 5 groups of up to 13 couples; support is provided through a mix of lectures, full-group discussions, and separate group discussions for diagnosed individuals and for their care partners.
The Early-Stage Alzheimer’s Education and Support Group serves as a portal to a thriving community of group “graduates.” These individuals meet monthly with a DFSP social worker for lunch at a local restaurant, and they participate in a “look and lunch” arts program at Duke’s Nasher Museum of Art. All programs are facilitated by individuals with a master’s degree in social work and are free and open to the public.
In addition to programs, the DFSP publishes a newsletter, The Caregiver, which has its roots in the original support group’s desire to share stories and tips. Now published twice annually and circulated free of charge to 11,000 readers, The Caregiver is the oldest continuously published family caregiver newsletter in the United States.
The DFSP also offers the following services and information to all North Carolina residents at no cost: help with care decisions and coping strategies; personalized tips on caring for people with memory disorders; research updates and options for participating in studies of Alzheimer disease treatments, caregiving, and prevention; help in choosing support groups, education programs, online resources, or books; and a comprehensive, regularly updated information packet on Alzheimer disease.
Finally, the DFSP serves North Carolina agencies, employees, and community groups by providing technical assistance and training programs for agencies who serve individuals with Alzheimer disease or their caregivers; outreach to and education of community groups through presentations, “lunch and learn” programs, and information tables; and Project C.A.R.E. (Caregiver Alternatives to Running on Empty), which offers individualized consultations for families in central North Carolina. The DFSP also operates the Duke Employee Elder Care Consultation Service, which provides work site family consultations, often during crises, for Duke employees who are facing eldercare decisions.
Since 1984 the DFSP has been partially funded by the Division of Aging and Adult Services of the North Carolina Department of Health and Human Services; the remainder of the program’s funding comes from research grants and contracts. The program continues to serve as a state barometer of family needs and preferences and of gaps in health and social support services.
To get answers to questions or discuss concerns, contact Lisa Gwyther, MSW, LCSW (Lisa.Gwyther@duke.edu) or Bobbi Matchar, MSW, MHA (Bobbi.Matchar@duke.edu); call 800-646-2028; or visit the program’s Web site (www.dukefamilysupport.org).
Potential conflicts of interest. B.G.M and L.P.G. are both employees of the Duke Center for Aging Family Support Program.
Bobbi G. Matchar, MSW, MHA social worker, Duke Center for Aging Family Support Program; family consultant, Central North Carolina Project C.A.R.E. (Caregiver Alternatives to Running on Empty), Durham, North Carolina.
Lisa P. Gwyther, MSW, LCSW associate professor, Department of Psychiatry and Behavioral Sciences, Duke University; director, Duke Center for Aging Family Support Program; director, Duke Employee Elder Care Consultation Service; education director, Bryan Alzheimer’s Disease Research Center, Durham, North Carolina.
Address correspondence to Ms. Bobbi G. Matchar, Duke University, 3600 DUMC, Durham, NC 27710 (firstname.lastname@example.org).