The symptom experience of community-dwelling persons with dementia: Self and caregiver report and comparison with standardized symptom assessment measures

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