In June 2015, through the efforts of the Long-Term Care Ombudsman Program and Adult Protective Services, residents of Durham came together to observe Elder Abuse Awareness Day – a day to raise awareness and hold conversations about the risk of elder abuse. The message focused on prevention and awareness for caregivers and the public—when abuse takes place and is not reported, the person(s) witnessing the event are also guilty of neglect or abuse. Group attendees were passionate and decided to continue the conversation about caring for the elderly and individuals living with dementia.

Carmelita Karhoff, community volunteer and champion for Dementia Inclusive Durham, received the task to develop community-involved strategies for individuals living with dementia. That fall, a demonstration project began to enhance the quality of life for individuals with dementia in Durham. Medical and academic professionals already working on the subject joined the group to form a grassroots effort that focused on a more holistic approach to caring for those with cognitive issues. They tested the waters with wellbeing of patients and care partners and the group received positive feedback from the community. The Durham Partnership for Seniors became the oversight group, and working with the Triangle Agency on Aging and Durham Center for Senior Life, Dementia Inclusive Durham (DID) launched in March 2016. A kick-off event was held to inform the public on DID’s goals for enhancing the lives of individuals living with dementia and their caregivers.

DID developed a specific plan to assess Durham County and its readiness and understanding of dementia. The group conducted assessments with agencies that support the aging population, safe communities and long-term care homes. They discovered there was not a lot of understanding of the dementia disease process and the needs that exist for patients beyond the disease. With that knowledge in hand, the group held forums and conferences to provide education. They engaged the faith-based community to foster understanding within congregations of individuals living with dementia. Students from UNC developed an assessment tool for faith communities, researching tools used in the United Kingdom and beyond.

After experiencing success with spot education and awareness activities, DID members decided to go beyond the traditional sectors and take dementia awareness and educational programming, using the Domains of Wellbeing as the foundational structure of their work, to the neighborhood. The West Durham neighborhood became the site of a community demonstration project and in this neighborhood, there is a high percentage of African Americans and Latinos, who are at higher risk than other racial/ethnic groups for developing dementia. The neighborhood strategy is the same process – to increase education and understanding of dementia. Funded by the city of Durham, DUSON, and community support, the group’s next steps are engaging more with community organizations and determining gaps in programming.

Over the last year, DID worked with DUSON faculty members Ellie McConnell, PhD, MSN, RN, GCNS, BC, associate professor; and Kirsten Corazzini, PhD, FGSA, associate professor; on a project to adapt the Personal Outcomes Approach (POA), first created in the United Kingdom, for use in the United States. POA aims to engage those living with dementia and their caregiver to determine goals that are meaningful and not only treatment-oriented.  The project received funding from the Duke Clinical & Translational Science Institute with additional funding coming from one of D-CHIPP’s small grants for community partners last year. The group used the monetary support to build their music therapy program, which lends equipment out to individuals living with dementia and their caregivers. Evidence shows music therapy benefits the caregiver and the person living with dementia as it provides a way for both to connect through music.

Karhoff describes the program and research partnership with DUSON as a great learning experience. “It has expanded my knowledge base. I’ve learned more from the experience working with faculty than I could have if I went to school.”

Sustainability of DID is important to the continuation of the group. McConnell and Judy Kinney, director of the Durham Senior Life Center, will lead the group as new co-chairs, into a more sustainable structure. The DID strategic plan includes financial support coordinated by their volunteers. Fundraising events typically include an education component along with a presentation. Events focus on personalized music, with financial support purchasing additional headsets for individuals living with dementia.

DID volunteers hold an open meeting the second Friday every other month at St. Luke’s Episcopal Church. Depending on areas of interest, individuals looking to get involved with DID can serve in the neighborhood, faith community or arts. Semester projects working directly with individuals living with dementia (and cognitive/developmental disabilities) in long-term care homes are available for DUSON students in advanced programs.  

“Going beyond dementia as a disease is critical for DID to address. The person living with dementia lives always in the present. Understanding how they feel joyful and connected would be one of our biggest accomplishments,” says Karhoff.  

Visit this page to volunteer or learn more about DID.