The longitudinal course and determinants of apathy in UK care home residents with dementia

Abstract

AbstractBackgroundApathy in dementia is a common and troubling symptom associated with worse disease outcomes but its longitudinal course is unclear We aimed to 1) describe the prevalence and persistence of clinically‐significant apathy in UK care home residents with dementia, 2) investigate the association of other neuropsychiatric symptoms in people with clinically‐significant apathy, and 3) identify sociodemographic and disease related factors associated with worse apathy trajectory.MethodProspective cohort study of residents with dementia recruited from 86 voluntary, state or private UK care homes. At baseline, and 4, 8, 12, and 16 months, care home staff rated apathy using the Neuropsychiatric Inventory (clinically‐significant apathy if score ≥4, sub‐clinical if 1‐3). Staff also rated dementia severity using the Clinical Dementia Rating scale, and provided other sociodemographic information about each participant. We examined the prevalence and persistence of apathy and, in mixed linear models, its association with time, age, sex, dementia severity, antipsychotic use, and baseline apathy and other neuropsychiatric symptoms.ResultsOf 1419 included participants (mean age 85 years (SD 8.5), 975 (68.7%) women), 30% had mild dementia, 33% moderate, and 37% severe. The point prevalence of clinically‐significant apathy was 21.4% (n = 304) and the period prevalence during 16 months follow‐up was 47.3% (n = 671). The point‐prevalence and 16‐month period prevalence of any apathy was 33.3% and 85.1% respectively. The longitudinal course is shown in the figure. Of participants who had follow‐up data, 45 (3.8%) were always clinically‐significantly apathetic, 3 (0.3%) were always sub‐clinically apathetic, and 420 (36.2%) were never apathetic until death or end of follow‐up. In adjusted models, apathy increased over time and was associated with having more severe dementia, worse baseline apathy and other neuropsychiatric symptoms.ConclusionMost people with dementia are not apathetic but it is common and frequently fluctuates in its course. It is important for clinicians to know that most people with dementia do not develop apathy and it is not an inevitable symptom and often remits. People with more severe dementia and other neuropsychiatric symptoms are more likely to have an adverse apathy course, so may be a priority group for current and future treatments.