Caregiver Attributions of Cause to Behavioral Symptoms of Dementia

Abstract

AbstractBackgroundMost individuals with Alzheimer’s disease and related dementias (ADRD)exhibit behavioral and psychological symptoms of dementia (BPSD) which can negatively impact quality of life for both caregiver and care recipient, yet there is a lack of knowledge on mechanisms of symptom development and triggers that can exacerbate a symptom. Thus, the aim of this study is to explore family caregiver perceptions’ of why a particular BPSD occurred.MethodThis study used a micro‐longitudinal design with family caregivers (N = 69) completing 8 days of diaries four times a day. Diaries were sent randomly three times a day and once in the evening. Data for this study were derived from the three random diaries (n = 982 responses) from the open‐ended question, “why do you think the behavior occurred?” This question was a follow‐up question to the caregiver’s report of the last observed behavioral symptom. Content analysis was used to identify initial codes for thematic analysis. Focused coding was used to further refine and organize into thematic categories.ResultThe sample was 54% African American and 69% female with a mean age of 74 caring for a close family member with dementia. Final analysis of data revealed 5 themes describing the caregivers’ perceptions of the cause of the behavioral symptom. These themes included describing the cause as: 1) the care recipient experiencing a loss of autonomy, 2) behavioral symptom as a direct result of the disease, “it’s Alzheimer’s, stupid.” 3) attributing negative emotions to the care recipient, anger, fear 4) environmental factors such as too much conversation, TV show, being cold 5) physical symptoms, “knee pain, “lack of rest,” ill‐fitting dentures. Responses among many of the individual caregivers varied daily from diary to diary based on the behavior reported or they simply answered, I do not know.”.ConclusionThere are many interventions which aim to reduce caregiver stress and improve management of BPSD though they often have small effect sizes and do not sustain the effect over time. Incorporating insights from caregivers on how BPSD occur in daily life may provide for more ecologically valid interventions.