Location, Location, Location: Addressing Urban-Rural Disparities in Dementia Practice and Research

Purpose

This qualitative study explores the impact of an urban setting on couples with one member diagnosed with dementia over age 64.  Findings suggest that looking beyond the person with the diagnosis, a primary caregiver or a dyadic care partnership, may provide pathways to new resources, such as care communities, an under-represented care model in dementia literature. In an urban environment, these resources are often readily available and can be effective where maintaining quality of life is concerned. Significantly, quality of life has been correlated to better outcomes in dementia. Study objectives consisted of deepening understanding of informal care in an urban environment; articulating implications for social work practice in dementia; and making recommendations for future research addressing growing disparities between urban and rural populations. Guiding questions included, what role does location play in informal urban care? How is community experienced by dementia-affected couples? And, what relationship is there between location, community and quality of life in informal dementia care?

Methods

This secondary analysis of qualitative data previously collected by the author adopts a Grounded Theory approach to explore a new set of questions. The sample consists of seven city-based couples where one member was diagnosed with dementia after age 64, and members of their support networks, including extended family, friends, neighbors and local merchants. Participants were identified through purposive and snowball sampling. Data for this study consists of transcribed and de-identified interviews. The study meets IRB requirements for the protection of participants. Data analysis followed guidelines for Grounded Theory and consisted of an iterative process focused on identifying themes that can provide a starting point for further inquiry and hypothesis formulation.

Results

Results include that the urban context provides significant and under-explored resources, which are notably absent from rural settings. Consisting of extended family, friends, and neighbors, care communities available in urban environments can have positive effects on quality of life in dementia. Further, results suggest that quality of life remains possible in dementia when it is experienced as a series of moments rather than a continuous state, and is grounded in community support.  Results draw attention to the disparities in dementia outcomes experienced by rural and urban populations due to their settings, and suggests ways to address them.

Discussion and implications

Results have practice and research implications. By highlighting a relationship between location, community and quality of life, the study underscores the significance of social support in dementia. In addition, it introduces a nuanced definition of quality of life that is under-explored in scholarship but which plays an important part on outcomes. Findings argue for interventions such as support groups and advocacy that can enhance social networks, and research that focuses on understanding and reducing disparities experienced by urban and rural populations affected by dementia. Ultimately, the study re-enforces location-specific practice and research that reflect a strengths perspective to challenge perceptions of the illness and restore hope.