Creating zines about Alzheimer's disease and related dementias for American Indian and Alaska Native youth caregivers

Abstract

Background

In many American Indian and Alaska Native (AIAN) communities, family members care for elders with memory issues. AIAN youth are a unique and important caregiving group who may lack basic caregiving skills, as well as developmentally and culturally appropriate support and resources.

Methods

Grounded in community-based participatory research (CBPR), AIAN youth (n = 8) participated in talking circles to discuss their experiences caring for someone who has memory loss. They shared stories and reflected on their understanding of Alzheimer's disease and dementia. Youth were invited to participate in two 1-h trainings on storytelling and zine-making and then invited to create a zine.

Results

The youth described changes in a person's ability to take care of themselves or changes in typical activities as the first signs of memory loss. Youth shared how they helped provide care. Zines created by 3 youth depicted aunties and grandmothers with dementia and the importance of self-care as a young caregiver.

Conclusion

AIAN youth are an important caregiving group. Zines provide youth caregivers a platform to share their stories with other youth in their own way. Zines can be easily shared to support other youth ADRD caregivers who may struggle with the emotions of long-term caregiving for a family member.