Date of Award
PhD Health Sciences
Health and Medical Sciences
Genevieve Pinto Zipp, EdD
Deborah DeLuca, JD
Michelle D'Abundo, PhD
Dementia, Caregiver, African American, Stress, Caregiver Burden, Identity
Background: Dementia is a public health problem that is estimated to triple by 2050.Globally, dementia is the seventh leading cause of death among all diseases and one of the major causes of disability and dependency among older people. The direct medical costs and indirect social and economic costs of dementia are burdensome to society, and by 2030 it is projected to cost more than $2.8 TRILLION dollars worldwide. African Americans are two to four times more likely to be diagnosed with dementia than White Americans; and more likely to rely on informal care from family and friends. African American caregivers experience higher burdens from caregiving and spend more time caregiving on average than their White or Asian-American peers. African Americans are culturally raised to believe that elder care is provided by a family member or loved one. Many African American caregivers may not fully appreciate or understand the complexities of being a caregiver for a loved one with dementia may have on their wellbeing, how to balance personal and work life needs, or how to seek support services.
Purpose: The purpose of this study is to understand the act of caregiving for a loved one with dementia in the African American community and how the impact of cultural beliefs, reciprocity, religion and spiritual values, and formal support services shape the caregiving role.
Methods: Semi-structured interviews were utilized to collect data, using a qualitative phenomenological approach. Purposeful, convenience, snowball sampling was employed. Voluntary participants were asked 10 open ended questions using an Interview Guide Questionnaire that developed based on the literature review and the conceptual framework of the Caregiver Identity Theory to gain an understanding and an essence of the caregiver’s everyday experiences. A Delphi process was for face and content validity of the interview questions. Interviews were transcribed verbatim. Transcripts were coded using in-vivo and descriptive coding then developed into categories for thematic analysis. Interviews were conducted until saturation was achieved and no new codes emerged. Intercoder consensus was obtained.
Results: 11 interviews took place with African American caregivers caring for a loved one with dementia. The lived experiences of African American caregivers who care for family members with dementia can be overwhelming and an extremely emotional process that leaves caregivers experiencing higher rates of stress, struggling with their identity, and experiencing shifts in their relationships with the person they are caring for and others. However, the feelings of gratification are rewarding for this population who rely on their faith and are in need of formal support services to care for their loved one.
Conclusion: African American Dementia Caregivers are a unique population that is on the rise. Resources, services, and assistance to access services are needed for African American dementia caregivers. Meaningful training programs to support their needs will further aid African American dementia caregivers and help them better understand the complexities involved in providing dementia care for their loved ones.
Key Words: Dementia, Caregiver, African American, Stress, Caregiver Burden, Caregiver Identity Theory
Madison, Paula R., "Understanding the Experiences of African American Caregivers of Loved Ones with Dementia" (2022). Seton Hall University Dissertations and Theses (ETDs). 3039.