“We’re Walking Around Blindfolded”: Diverse caregiver reflections on dementia diagnosis and care

Abstract

AbstractBackgroundPrevalence of dementia is highest in African Americans and Hispanics. Yet, many minorities experience missed or delayed dementia diagnoses and disparities in quality of dementia care. The objective of this study was to understand racial and ethnic minority experiences of dementia diagnosis and develop recommendations for clinicians and health systems to improve diagnosis and early care for diverse populations from the caregiver perspective.MethodMinority dementia caregivers in the Baltimore, Maryland region were recruited from specialty clinics, prior studies, and the Alzheimer’s Association to participate in semi‐structured, in‐depth, qualitative interviews. Interviews topics included early dementia symptoms, diagnosis experiences, healthcare system interactions, and recommendations for clinicians. Interviews were coded and analyzed by three investigators using qualitative content analysis methods.ResultEighteen family caregivers (11 African American, 4 Asian and 3 Hispanic), mostly adult children (n=15) of the person with dementia, participated. Four themes emerged around recommendations for clinicians and health systems throughout the diagnosis process. 1) Involve family: Recommendations pertaining to family involvement included listening to family concerns, sharing patient information including diagnosis, recommending family counseling or meetings, and understanding family and culture specific care plans. 2) Knowledge is power: Information was felt to be essential. Caregivers desired clear or written diagnosis, guidance on what to expect (roadmap), and concrete resources. 3) Provide proactive care: Caregivers likened the need for cognitive screening to cancer screening. They felt clinicians should proactively detect early signs of dementia, educate caregivers on potential challenges (safety, finances), and offer support to both patient and caregivers. 4) Mind your (bedside) manners: Caregivers shared both positive and off‐putting interactions. They appreciated clinicians who were straightforward, demonstrated compassion rather than nihilism or negativity, and were readily available for questions.ConclusionMinority dementia caregivers shared recommendations for clinicians related to four themes, which included involving family, offering knowledge and information, providing proactive care, and being mindful of bedside manner and language in dementia detection, diagnosis, and early care processes. Caregiver perspectives and recommendations should be incorporated into clinical practice and dementia care interventions for diverse aging populations.