Lived Experience of the African American Informal Caregivers of a Family Member with Alzheimer’s Disease and Related dementia

Purpose: The purpose of this qualitative study was to describe the lived experience of African American informal caregivers of family members of Alzheimer’s Disease and Related Dementias (ADRD) in a home environment.

Design and Method: This phenomenological descriptive qualitative study guided by Husserl’s philosophy of the phenomenology was used to interview 16 African American informal caregivers in southeastern United States. Colaizzi’s Method of Data Analysis was used to analyze the data. The participants were solicited by word of mouth from a local church, an adult day care center, a physician’s clinic, a home community-based service, and a respite care program. The participants were interviewed using a semi- structured questionnaire; each interview lasted an average of 60 minutes.

Findings: Four thematic areas reflecting caregiver understands of caregiving were identified: a) sense of obligation, b) arduous journey, c) sentinel events, and d faith in God. Findings indicated that caregivers needed to be well-informed concerning the demands of caregiving and needed more assistance with the task of delivering care. Informal caregivers lacked support, knowledge, and guidance.

Conclusion: This study offers a fresh, in-depth insight into how African American informal caregivers understood their experiences with caregiving. While caregiving for a family member with a debilitating disease like Alzheimer’s and related dementias can be challenging and can cause physical, emotional, and potential financial strain, it is not and does not have to be the complete experience for caregivers who willingly undertake the role. Implications for the discipline of nursing include emphasis on family assessment, teaching, awareness of resources, and collaboration with health care teams. Family assessment of the caregiving situation can lead to positive outcomes for the caregiver and care recipient.

What will audience learn from your presentation?

• The audience will be able to use that they learn because they will be made aware of a broad range of the needs of the informal African American caregivers of a family member with ADRD. The findings of this study can provide valuable information to improve services for African American informal caregivers. Nurses need to be aware of family needs and accurately assess them so that they can be addressed.
• This will help the audience be more proficient in their jobs because nurses should be aware that the needs of the African American caregivers with a family member with ADRD are complex. It is the role of the nurse to assess the needs of the caregiver and collaborate with physicians and other members of multidisciplinary teams to provide intervention for the needed support of the caregiver.