“Please Don't Assess Him to Destruction”: The R.A.I.S.E. Assessment Framework for Primary Progressive Aphasia

Abstract

Purpose: Speech-language pathologists (SLPs) assess people with primary progressive aphasia (PPA) through measurements of speech, language, communication, and well-being, with the aims of identifying challenges and strengths, monitoring change, and informing treatment directions and supports. The purpose of this clinical focus article is to highlight the necessity for person-centered assessment specific to PPA and to conceptualize a framework that acknowledges the multifaceted nature of assessment for this population. In this framework, the unique challenges posed by a diagnosis of PPA are addressed with the aim to provide practical guidance for clinicians and to support reflection on current practices. Method: In clinical and research practice, assessment of people with PPA requires an ever-evolving approach that is centered on the client. In this clinical focus article, a discussion-based consensus process was used to synthesize authentic longitudinal experiences of people with PPA to explore assessment approaches, tools, and philosophies. Results: This analysis of person-centered assessment identifies seven essential components of assessment in PPA that set the foundation for the five steps of the R.A.I.S.E. Assessment framework. These components each contribute to a clear definition of assessment that reveals clients' competencies with a strengths-based focus; prioritizes the reciprocity of benefits; promotes dynamic assessment; and recognizes the complexity, evolution of assessment over time, and advocacy. Conclusions: This clinical focus article takes a novel look at assessment in PPA by stepping away from assessment practices that focus on revealing deficits and decline and, instead, provides practical recommendations through the conceptualization of a PPA-specific assessment framework. The R.A.I.S.E. Assessment framework is grounded in principles of uplifting clients through person-centered assessment, keeps pace with best practice in PPA intervention, and contributes to a supportive experience for clients and families in the face of a progressive diagnosis over time.

The Functional Communication Checklist for People Living with Primary Progressive Aphasia: Study Protocol

“…We will then gather targeted feedback for the people assessed, providing the person and people who want to communicate with them specific and evidence-based recommendations to address areas of concern and improve FC. To generate this targeted feedback [9,11,12,25] based on the FCC’s structure, the study team will develop informational guidance and clinical recommendations for each of the behaviors included. The purpose is multifold and intended for patients, care partners, researchers, and clinicians.…”

“…As a result, a "gold standard" approach to care remains to be established [8]. Clinical assessment is essential to accurately identify and to formulate a specific diagnosis of PPA, and efficiently lead to treatment recommendations and post-diagnostic supports; however, to date, assessment procedures and documentation protocols are non-standardized or non-specific to this population [8,11]. These significant limitations have adverse effects on the accuracy and efficiency of diagnostic formulation and assessment outcomes, and result in irregularities in clinical evaluation protocols and cross-institutional characterization of research cohorts.…”

“…Particularly for rare neurodegenerative conditions, accurate and efficient assessment is critical to formulate a diagnosis, establish the effects of intervention, and monitor decline [8,11,13,14]. There is a need for direct assessment of functional communication (FC) in people with dementia [15] and PwPPA [16], particularly as this skill relates to early detection and designing optimal plans for intervention [13].…”

“…This study protocol centers on advancing assessment practices of FC for PPA, a critically important aspect of supporting activities of daily living, autonomy, and therapeutic intervention [7]. FC is interactive and contextual [7], yet traditional assessments of speech and language are not interactive and do not generalize to natural conversation [11,17]. As such, the current inventory of tools developed to capture and characterize FC decline in PPA is insufficient [8,16,17].…”

Large-Scale Longitudinal Assessment of Declining Memory Function Through Individualized Modeling of Episodic Memory

“…The early detection of such conditions is crucial, as many MCI causes are reversible, and lifestyle modifications can halt or reverse cognitive decline (5). The potential for early intervention to significantly alter patient outcomes underscores the pressing need for diagnostic tools that are not only more accurate but also accessible and patient-centric (6).…”