Abstract
Abstract Purpose This study aimed to identify the concerns and unmet needs of patients and care partners after incident primary care diagnosis of cognitive impairment. Methods Primary care providers referred older adults who had newly diagnosed with cognitive impairment for a telephone encounter, the ‘Brain Health Consultation’ (BHC), with a dementia expert nurse. The nurse assessed for questions or concerns regarding immediate needs, cognitive, neuropsychiatric, functional, or other symptoms; cognitive assessment results and the diagnosis; care planning including safety, prognosis, treatments, advance care planning, and community services. Results Patients (N=37) and care partners (N=30) completed the BHC. The patients were racially/ethnically diverse; 51% Asian, 18% Non-Hispanic White, 10% Hispanic, 10% Black, 11% other). Most patients (70%) and caregivers (70%) endorsed cognitive concerns, and many patients endorsed mood (65%), sleep or fatigue (49%), and pain (10%) concerns. All patients and care partners had questions about the assessment results and diagnosis, and some patients (11%) and caregivers (13%) expressed concerns about disease progression. Few patients and caregivers expressed care planning needs. Conclusion Following incident cognitive impairment diagnosis in primary care, patients and families have unmet needs around understanding their assessment and diagnosis. Care planning may be reserved for a follow-up consultation after the patient and family have had time to understand and accept the diagnosis. While we used a dementia expert nurse to perform the BHC, given the types of concerns identified, a supervised, trained, unlicensed health professional (e.g., a care team navigator) may be appropriate to perform the BHC.
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