Abstract

Neurodegenerative disease syndromes often affect personality and interpersonal behavior in addition to cognition, but there are few structured observational measures of altered social demeanor validated for this population. We developed the Social Behavior Observer Checklist (SBOCL), a 3-min checklist tool, to facilitate identification of patterns of interpersonal behavior that are diagnostically relevant to different neurodegenerative syndromes. Research assistants without formal clinical training in dementia used the SBOCL to describe participants' behavior, including 125 healthy older adults and 357 patients diagnosed with one of five neurodegenerative disease syndromes: 135 behavioral variant frontotemporal dementia (bvFTD), 57 semantic variant primary progressive aphasia (svPPA), 51 non-fluent variant PPA (nfvPPA), 65 progressive supranuclear palsy (PSP), and 49 amyloid-positive Alzheimer's disease syndrome (AD), all of whom had concurrent 3D T1 MRI scans available for voxel-based morphometry analysis. SBOCL item interrater reliability ranged from moderate to very high, and score elevations showed syndrome-specific patterns. Subscale scores derived from a degree*frequency product of the items had excellent positive predictive value for identifying patients. Specifically, scores above 2 on the Disorganized subscale, and above 3 on the Reactive and Insensitive subscales, were not seen in any healthy controls but were found in many patients with bvFTD, svPPA, nfvPPA, PSP, and AD syndromes. Both the Disorganized and Reactive subscale scores showed significant linear relationships with frontal and temporal gray matter volume that generalized across syndromes. With these initial psychometric characteristics, the SBOCL may be a useful measure to help non-experts identify patients who are appropriate for additional specialized dementia evaluation, without adding time to patient encounters or requiring the presence of an informant.

Highlights

  • Different neurodegenerative syndromes are associated with development of distinct patterns of socioemotional behavior

  • A face-valid set of behavior items was identified on the basis of [1] a comprehensive literature review of the behavioral features seen in patients with neurodegenerative disease, [2] discussions with other specialist clinicians and clinical researchers at the UCSF Memory and Aging Center with extensive experience treating patients with neurodegenerative disease syndromes, [3] the condition that items should be objectively observable by a rater over the course of a typical 30–60 min clinical interaction with the patient, and [4] the condition that items should be understandable to a rater with no formal training in clinical terminology, behavioral observation, or dementia symptomatology

  • Mean age was significantly younger in patients with behavioral variant frontotemporal dementia (bvFTD) (M ± SD: 62.75 ± 8.99; p < 0.05) and significantly older in patients with progressive supranuclear palsy (PSP) (70.12 ± 6.82; p < 0.05) compared to the neurologically healthy older adults (NC) (66.03 ± 9.29) (Table 1), though groups did not differ by biological sex

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Summary

Introduction

Different neurodegenerative syndromes are associated with development of distinct patterns of socioemotional behavior. Informant interviews such as the Neuropsychiatric Inventory (NPI) [14] and the Behavioral Pathology in Alzheimer’s Disease Rating Scale (BEHAVE-AD) [15] are a common approach, and remain the gold standard in the field. Informant questionnaires such as the Interpersonal Reactivity Index [16], Revised Self-Monitoring Scale (RSMS) [17], Interpersonal Adjectives Scales (IAS) [18], and the Behavior Inhibition/Activation questionnaire (BIS/BAS) [19], are used to evaluate behavior change in individuals at risk for neurodegenerative conditions [2, 20,21,22]. Clinical evaluations of these individuals are commonly conducted without the benefit of an informant familiar with the patient’s behavior, a measure that relies on a clinician’s direct observations of the patient during a routine clinical encounter may be necessary

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