The Symptom Experience of Community-Dwelling Persons With Dementia: Self and Caregiver Report and Comparison With Standardized Symptom Assessment Measures

摘要: Objectives The symptom experience of community-dwelling persons with dementia adopting an open-ended approach has not been well documented. We sought to identify the most bothersome symptoms experienced using self and caregiver report, evaluate whether these are captured by commonly used symptom-assessment measures including Edmonton Symptom Assessment System (ESAS, standard in palliative care), Neuropsychiatric Inventory (NPI), End-of-Life Dementia Scale-Symptom Management (ELDS-SM). Design authors use data from Palliative Excellence Alzheimer Care Efforts (PEACE) study characterize experience. Setting PEACE included outpatient primary care geriatric patients urban setting affiliated University Chicago. Participants Data were examined 150 patient-caregiver dyads. Measurements during past week reported separately family caregiver. Symptoms asked format qualitative analysis constant comparative technique was applied for each response. Reports categorized frequencies tabulated. Results One hundred fifteen (35 could respond interview questions) 135 (median 1, range: 0–3). frequently pain (N = 48; 42%), depression 13; 11%), cognitive deficit 12; 10%), anxiety 7; 6%), ophthalmologic complaint 5; 4%). fifty caregivers 259 2, 0–5) 71; 47%), 46; 30%), 26; 17%), activity disturbance 23; 15%), thought perceptual disturbances 8%) being frequently. ESAS, NPI, ELDS-SM missed two or more dyads their caregivers. Conclusion caregiver; however, assessment overlooked important symptoms. All physicians should be vigilant about screening both psychologic physical this population.