An Exploration of Dementia Friendly Communities from the Perspective of Persons Living with Dementia

• Main Author: Hebert, Catherine
• Format: Others
• Language: English
• Published: Digital Commons @ East Tennessee State University 2017
• Subjects: dementia; dementia friendly communities; qualitative research; person-centered; identity; resilience; Civic and Community Engagement; Community-Based Research; Geriatric Nursing; Gerontology; Psychiatric and Mental Health Nursing; Social Work
• Online Access: https://dc.etsu.edu/etd/3324; https://dc.etsu.edu/cgi/viewcontent.cgi?article=4771&context=etd

The growing global prevalence of dementia coupled with a shift in public perception from a hopeless disease to the possibility of living well with dementia has led to the formation of dementia friendly communities (DFC). DFCs are a new phenomenon in the United States, with a gap in knowledge on input from people living with dementia (PLWD). This study investigated DFCs from the perspective of PLWD in Western North Carolina, with the following research questions: How are interactions and relationships experienced by persons living with dementia in the community? How is community engagement experienced by PLWD? To what extent and in what way is the impact of stigma associated with dementia? What are the attributes of a DFC from the perspective of PLWD? Eighteen older adults with reported dementia or memory loss were recruited from support groups or community organizations. Semi-structured interviews were conducted in participants’ homes and analyzed using conventional qualitative content analysis. Three major themes emerged from the transcribed interviews (a) transitions in cognition: vulnerable identities, (b) social connections, and (c) engagement in life activities. The dynamic experience of living with dementia revealed by participants suggested the following attributes of a DFC: (a) social inclusion, (b) support for role continuity, (c) availability of meaningful and contributory activities, (d) flexible support as cognition transitions, (e) community dementia awareness (to combat stigma), and (f) a supportive diagnostic process. The presence of care partners in the interviews was supportive, and the evaluation to sign consent tool assisted in determination of participant capacity to self-consent. The findings were interpreted through the theoretical frameworks of personhood, the social model of disability, human rights and citizenship, the environmental press model, and transitions theory. DFC development requires a contextual lens focused on well-being with input from multiple stakeholders including PLWD. Collaboration among community organizations supported by local, regional, and national policy supporting flexible service provision through cognitive transitions has the potential to provide a strong social network on which to build a DFC.