A Culturally Competent Approach to the Lived Experience of Dementia

Background

In 2021, the Global Council on Alzheimer’s Disease (GCAD) conducted research of the lived experience and care partner journey. In 2022 and 2023, GCAD expanded this research to focus on the experiences of individuals from historically underrepresented populations, specifically the LGBTQ+, Black, Latinx, and Asian communities.

"A Culturally Competent Approach to the Lived Experience of Dementia” seeks to explore the key differentiating factors in the journey for each population, how and when behavioral symptoms are identified and managed, and how the burden of care shifts among each community.

Method

To understand the experiences of each community living with dementia, we undertook qualitative primary research, complemented by secondary research. Primary research consisted of dozens of one‐on‐one interviews with people living with dementia and their care partners. Secondary research consisted of a review of existing literature on each community’s experiences with dementia.

Result

Results account for the journey that each community experiences. It maps not only the challenges they face, but also the resources the community has built, and how they manage care along the disease progression.

Conclusion

The research identifies several key differences in the dementia experience among each community. For instance, medical inequity includes a history of exploitation, discrimination, and distrust, which impacts how care is managed. Additionally we found that there is potential for a lack of a traditional family care structure, stigma surrounding dementia, and lack of resources and tools for living well with dementia.

This research also highlights the ways in which the communities are responding to those challenges. For instance, advocating for fair treatment within medical systems, raising awareness around dementia within their community, and creating systems of support and practices of care

Finally, it provides calls to action for how the broader dementia community can better support those from the underrepresented communities living with dementia. Addressing bias, discrimination, and inequity in healthcare settings, and creating resources that account for the specific needs and challenges of Black, LGBTQ+, Latinx, and Asian people living with dementia.