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

Abstract

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.

Keywords: access to care; ambulatory; care coordination; continuity of care; dementia; end-of-life; lost to follow-up; memory care; mixed methods; outpatient.