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.

Advance Directive and POLST Documentation in Decedents With Dementia at a Memory Care Center: The Importance of Early Advance Care Planning.

Background and Objectives: To determine the frequency of and challenges to documentation of advance care planning (ACP) in people with dementia, we conducted a chart review of 746 deceased patients seen at a tertiary memory care center between 2012 and 2017. Methods: The rates of documented advance directives (ADs), Physician Order for Life-Sustaining Treatment (POLST), and Do Not Resuscitate (DNR) status were calculated from review of institutional electronic health records. Regression analysis was used to determine associations between ACP documentation and patient characteristics. Results: At the time of death, approximately half of the patients had a documented AD and/or DNR status and 37% had a documented POLST; 30% of patients did not have any ACP documentation. Whereas most of the ADs were documented more than 5 years before time of death, POLST and DNR status were documented more frequently within 2 years of time of death. People who presented to clinic at a younger age and who primarily spoke English were more likely to have documented ADs. People living in zip codes with lower household incomes were 2-4.5 times less likely to have a POLST or DNR documentation. Discussion: ACP is underutilized in people with dementia, even among those seen in a specialty memory care center. ACP should be introduced early on for people with dementia to ensure patients have a voice in their care.