Characteristics of people with dementia lost to follow-up from a dementia care center

Objective: To identify the prevalence and characteristics of people living with dementia (PLWD) lost to follow-up (LTFU) from a specialized dementia care clinic and to understand factors influencing patient follow-up status. Methods: We conducted a retrospective chart review of PLWD seen at a dementia care clinic 2012–2017 who were deceased as of 2018 (n = 746). Participants were evaluated for follow-up status at the time of death. Generalized linear regression was used to analyze demographic and diagnostic characteristics by follow-up status. Text extracted from participant medical records was analyzed using qualitative content analysis to identify reasons patients became LTFU. Results: Among PLWD seen at a dementia care clinic, 42% became LTFU before death, 39% of whom had chart documentation describing reasons for loss to follow-up. Increased rates of LTFU were associated with female sex (risk ratio 1.27, [95% confidence interval 1.09–1.49]; p = 0.003), educational attainment of high school or less (1.34, [1.13–1.61]; p = 0.001), and death in a long-term care facility (1.46, [1.19–1.80]; p = 0.003). Commonly documented reasons for not returning for care at the clinic included switching care to another provider (42%), logistical difficulty accessing care (26%), patient-family decision to discontinue care (24%), and functional challenges in accessing care (23%). Conclusions: PLWD are LTFU from specialized memory care at high rates. Attention to care coordination, patient–provider communication, and integrated use of alternative care models such as telehealth are potential strategies to improve care.