Dementia Caregiver Mastery

Dementia Caregiver Mastery Using Cultural Practices of the White Earth Nation


In partnership with the White Earth Nation, the purpose of this research partnership is to culturally adapt and modify the Savvy Caregiver in Indian Country manual to address the unique culture experiences and needs of family caregivers. Savvy Caregiver for Indian Country is psychoeducational in nature, employing instruction (basic information about dementia), skills training (provision of caregiving strategies), active practice of behaviorally-oriented skills, and a coaching method that provides reinforcement as well as further guidance in the mastery of caregiving skills. The activities proposed in our study are premised on the idea that teaching caregivers to identify triggers for behavioral and psychological symptoms of dementia (BPSD), particularly agitation, and how to implement effective psychosocial strategies will result in an increase in feelings of contented involvement among caregivers, as well as a sense of caregiver mastery, and decreased likelihood of institutionalization. We will specifically explore the impact of cultural activities (e.g., Native foods, music, dancing, arts and crafts, storytelling) for family caregivers and persons with dementia (PWD) in reducing agitation. The need for caregiver support, reduction in the use of pharmacological interventions, and the need for culturally relevant psychosocial approaches to addressing BPSD is clear for the growing population of PWD.

What We Propose to Do

This study will seek input from an AI caregiver cultural advisory board and several focus groups of Minnesota-based American Indian (AI) family caregivers from the White Earth Nation. They will be asked to weigh in on how to make the Savvy Caregiver’s written and visual content and materials more culturally relevant. As part of this process, they will be asked to consider whether, as a strategy to help caregivers master and implement the skills needed to promote contented involvement in care recipients, the integration of important cultural elements into the examples of contented involvement design activities would be appropriate. The project’s identification of the use of Native foods, and other cultural practices (e.g., arts and crafts, singing, dancing, and so on) in the intervention is offered as a way for caregivers and PWD to share in a culturally valued community-oriented activity that can prove engaging for the PWD. This kind of engagement can serve to reduce or divert from concerning behaviors, such as agitation, a major issue identified by the investigators’ previous studies. We anticipate the modifications to the Savvy in Indian Country will flow from this pilot project, including those that might include teaching about the preparation of and reminiscence about traditional foods, and other cultural activities, will support an application for a Stage Ib project in which the preliminary efficacy of the psychoeducational mechanism of mastery-development behavior change will be tested in an adequately powered clinical trial. Once adapted for the White Earth Nation, we propose to pilot this program in a group setting which will enable participants to witness and learn from each as they implement the skills and knowledge taught in the program.

Why this is Important

Family caregivers experience significant stressors associated with BPSD, particularly agitation, and lack of education and resources on caring for someone with dementia. Despite these difficulties related to caring for a PWD, little is known about how AI/AN cultural norms, values, and beliefs might be leveraged for addressing caregiver stressors. The need for caregiver supports, reduction in use of pharmacological interventions, and alternative approaches to support and manage BPSD are rapidly increasing with the growing population of PWD. American Indian and Alaska Native dementia caregivers indicate agitation eventually leads to placing PWD in a care facility. Training caregivers to identify possible triggers and to manage changing symptoms is important in developing effective interventions that target agitation, leading to improved caregiver mastery and delayed institutionalization. Developing, testing, and translating reminiscence therapy (RT), a non-pharmacological approach to manage agitation among PWD, is a public health priority. This study will expand non-pharmacological psychosocial interventions with underserved populations within the dementia field and explore the connection between healthy eating, engaging in culturally meaningful activities, and positive behavioral therapies for PWD. The findings of this study will influence the debate on the impact of foods you have eaten your whole life and cultural activities on the health and well-being of PWD and their caregivers, as well as support the movement across Indian Country to integrate cultural activities into the daily lives of persons with dementia and their caregivers. This study will contribute to the evidence-based interventions focused on training American Indian caregivers to recognize triggers for agitation, redirect the person with dementia using behavioral management techniques (RT), and reframe the situation for the caregiver.