FLYING UNDER THE RADAR: UNDERSTANDING OLDER ADULTS LIVING UNDIAGNOSED OR UNAWARE OF DEMENTIA

Dementias due to Alzheimer’s disease and related disorders are common, costly, and devastating for individuals, families, and society. About half of the approximately six million persons living with dementia in the United States are undiagnosed. Individuals with undiagnosed dementia are living with cognitive impairment that affects everyday activities but has not been detected by patients, families, and/or clinicians. Additionally, in one third of diagnosed patients, they or their families are unaware of the dementia diagnosis. Thus, diagnosis does not always translate to awareness and understanding of a significant condition. Though many individuals with dementia are undiagnosed or unaware, early diagnosis and disclosure is controversial in the absence of disease-modifying treatments. Diagnosis and awareness are required first steps for patients and families to receive care and support for dementia. Moreover, older adults living undiagnosed or unaware of dementia may be at risk for adverse outcomes and complications observed in diagnosed dementia, such as falls, delirium, neuropsychiatric symptoms, and hospitalizations. In light of controversies and limited evidence surrounding earlier diagnosis of dementia, this dissertation seeks to investigate who is living undiagnosed or unaware of dementia, adverse outcomes they potentially experience, why certain groups are more likely to be undiagnosed, and benefits versus harms of diagnosis. The introduction describes what is known about undiagnosed dementia, including why individuals may be undiagnosed, disparities in diagnosis, and emerging studies on adverse outcomes. In Chapter 1, I describe a cross-sectional study identifying characteristics associated with undiagnosed dementia and unawareness of diagnosed dementia in a nationally representative, population-based cohort of older Americans. Chapter 2 builds upon the cross-sectional study, examining risk of acute care utilization outcomes longitudinally in older adults undiagnosed or unaware of dementia. Chapter 3 presents a qualitative study of racial/ethnic minority dementia care partners that explores why diagnosis may be delayed, whether diagnosis was perceived as delayed, and how diagnosis was beneficial or harmful for patients and families. The conclusion describes how this series of studies adds to limited knowledge surrounding underdiagnosis and under-awareness of dementia and future directions to optimize timely diagnosis and high quality care for older adults and families facing dementia