Understanding characteristics of persons with early onset dementia in the UCLA Alzheimer’s and Dementia Care Program

Background Although early onset dementia (EOD) accounts for approximately 5% of persons living with dementia (PLWD), there is limited understanding of their demographic characteristics, behavioral symptoms, and caregiver measures, especially in comparison to persons with older onset dementia (OOD). Method The UCLA Alzheimer’s and Dementia Care Program is a comprehensive dementia care management program that has served over 3450 PLWD since 2012. This retrospective study compares baseline visit characteristics of participants with EOD (≤ 65 years of age) to participants with OOD (≥ 80 years of age). Variables include patient and caregiver demographics, Neuropsychiatric Inventory Questionnaire (NPI‐Q) scores, Mini Mental State Exam (MMSE), Modified Caregiver Strain Index (MCSI), caregiver PHQ‐9, and insurance status. Fisher exact tests were used to test differences between age groups. Result The attached table presents comparisons of the 177 participants with EOD and 731 with OOD. Compared to OOD, persons with EOD were more likely to be men, college graduates, dually insured, have unpaid caregivers, live alone, and be married. Caregivers for persons with EOD were most often spouses, whereas caregivers for persons with OOD were more often children. Although participants had similar MMSE scores, NPI‐Q severity and NPI‐Q distress scores were higher among persons with OOD compared to EOD. Conclusion There are important differences in demographic characteristics, caregiving status, and behavioral symptoms among persons with EOD compared to those with OOD. Understanding the unique challenges, needs, and resources of persons with EOD may provide valuable insight to adapt dementia care to better meet their needs.