Montreal Cognitive Assessment Scores Do Not Associate With Communication Challenges Reported by Adults With Alzheimer's Disease or Parkinson's Disease.

PURPOSES: Screening for cognitive-communication challenges in people with Alzheimer's disease (AD) or Parkinson's disease (PD) may benefit from multiple kinds of information about the client (e.g., patient-reported, performance-based). The purposes of this report are (a) to describe, using recently published score range descriptors (e.g., "mild," "moderate"), the patient-reported communication challenges of people with AD or PD using the Communicative Participation Item Bank (CPIB) and the Aphasia Communication Outcome Measure (ACOM); and (b) to examine the relationships between the performance-based Montreal Cognitive Assessment (MoCA), a cognitive screener, and patient-reported CPIB and ACOM scores. METHOD: Participants were a convenience sample of 49 community-dwelling adults with AD or PD. Participants completed the measures in person as part of a larger assessment battery. RESULTS: MoCA total scores ranged from 7 to 28. CPIB T-scores fell in the following ranges: 31% were "within normal limits," 57% reflected "mildly" restricted participation, and 12% reflected "moderately" restricted participation. ACOM T-scores fell in the following ranges: 50% were either "within normal limits" or reflected "mild" impairment, 29% reflected "mild-moderately" impaired functional communication, and 21% reflected "moderately" impaired functional communication. There were only weak and nonsignificant correlations between T-scores on the ACOM or CPIB and scores on the MoCA, and there were no group differences on the ACOM or CPIB between individuals who screened positive versus negative on the MoCA. CONCLUSION: When screening individuals with AD or PD, patient-reported communication challenges seem to be complementary to information provided by the MoCA and perhaps most useful in screening for mild communication challenges.

Poststroke Communication Ability Predicts Patient-Informant Discrepancies in Reported Activities and Participation.

BACKGROUND: Participation in life situations has been identified by people with aphasia (PWA) as an ultimate outcome of rehabilitation and is often measured with patient-reported outcome measures (PROMs) or informant-reported measures. It is known that PWA and informants do not always produce similar scores on measures of activities and participation. However, systematic differences between PWA and informants and the causes of these differences are not well understood. Here, we investigated these differences as a function of language impairment, perceived level of activity and participation success, and depressive symptoms. METHOD: Participants were 29 PWA-informant dyads who completed a performance-based language assessment and three measures related to different aspects of activities and participation. Outcome variables were PWA-informant difference scores in the activities and participation measures. RESULTS: PWA ratings of activities and participation were not statistically significantly associated with performance-based language severity. Hierarchical regression models with both language impairment and informant-reported scores as predictor variables explained 53%-71% of the variance in PWA-informant difference scores (all p < .05). In particular, mild communication challenges were associated with the PWA reporting significantly worse participation than the informant perceived. In contrast, more severe communication challenges were associated with the PWA reporting significantly better participation than the informant perceived. DISCUSSION: These findings highlight the importance of measuring participation by PROM. The PWA's experience of participation is not related to their level of language impairment and is predictably different from their care partners' perspective. As others have also reported, "mild" aphasia is not so mild to the PWA. Similarly, "severe" may not be so severe to the PWA. Further research is needed to connect these findings with counseling and caregiver education. Research on response processes (e.g., response shift) is also warranted.

Development of consensus-based considerations for use of adult proxy reporting: an ISOQOL task force initiative.

AIMS: Many large-scale population-based surveys, research studies, and clinical care allow for inclusion of proxy reporting as a strategy to collect outcomes when patients are unavailable or unable to provide reliable self-report. Prior work identified an absence of methodological guidelines regarding proxy reporting in adult populations, including who can serve as a proxy, and considerations for data collection, analysis, and reporting. The primary objective of this work by the ISOQOL Proxy Task Force was to review documents and clinical outcome assessment measures with respect to proxy reporting and to develop, through consensus, considerations for proxy reporting. METHODS: We assembled an international group with clinically relevant and/or methodological expertise on proxy use in adult populations. We conducted a targeted review of documentation based on regulatory, non-regulatory, professional society, and individual measure sources. Using a standardized collection form, proxy-related information was extracted from each source including definitions of a proxy, characteristics of a proxy, domains addressable or addressed by a proxy, and observer-reporting. RESULTS: The definition of proxy was inconsistent across 39 sources, except regulatory documents which defined a proxy as a person other than the patient who reports on an outcome as if she/he were the patient. While proxy report was discouraged in regulatory documentation, it was acknowledged there were instances where self-report was impossible. Many documentation sources indicated proxies would be well-justified in certain contexts, but did not indicate who could act as a proxy, when proxies could be used, what domains of patient health they could report on, or how data should be reported. Observer-reported outcomes were typically defined as those based on observed behaviors, however there was not a consistent differentiation between proxy and observer reporting. Based on information extracted from these resources, we developed a checklist of considerations when including proxy-reported measures or using proxies in study design, data collection, analysis, interpretation and reporting of proxy reported data. CONCLUSION: Our targeted review highlights a lack of clarity in capturing, interpreting and reporting data from proxies in adult populations. We provide a checklist of considerations to assist researchers and clinicians with including proxies in research studies and clinical care. Lastly, our review identified areas where further guidance and future research are necessary.

Automation of Language Sample Analysis.

PURPOSE: A major barrier to the wider use of language sample analysis (LSA) is the fact that transcription is very time intensive. Methods that can reduce the required time and effort could help in promoting the use of LSA for clinical practice and research. METHOD: This article describes an automated pipeline, called Batchalign, that takes raw audio and creates full transcripts in Codes for the Human Analysis of Talk (CHAT) transcription format, complete with utterance- and word-level time alignments and morphosyntactic analysis. The pipeline only requires major human intervention for final checking. It combines a series of existing tools with additional novel reformatting processes. The steps in the pipeline are (a) automatic speech recognition, (b) utterance tokenization, (c) automatic corrections, (d) speaker ID assignment, (e) forced alignment, (f) user adjustments, and (g) automatic morphosyntactic and profiling analyses. RESULTS: For work with recordings from adults with language disorders, six major results were obtained: (a) The word error rate was between 2.4% for controls and 3.4% for patients, (b) utterance tokenization accuracy was at the level reported for speakers without language disorders, (c) word-level diarization accuracy was at 93% for control participants and 83% for participants with language disorders, (d) utterance-level diarization accuracy based on word-level diarization was high, (e) adherence to CHAT format was fully accurate, and (f) human transcriber time was reduced by up to 75%. CONCLUSION: The pipeline dramatically shortens the time gap between data collection and data analysis and provides an output superior to that typically generated by human transcribers.

DementiaBank: Theoretical Rationale, Protocol, and Illustrative Analyses.

PURPOSE: Dementia from Alzheimer's disease (AD) is characterized primarily by a significant decline in memory abilities; however, language abilities are also commonly affected and may precede the decline of other cognitive abilities. To study the progression of language, there is a need for open-access databases that can be used to build algorithms to produce translational models sensitive enough to detect early declines in language abilities. DementiaBank is an open-access repository of transcribed video/audio data from communicative interactions from people with dementia, mild cognitive impairment (MCI), and controls. The aims of this tutorial are to (a) describe the newly established standardized DementiaBank discourse protocol, (b) describe the Delaware corpus data, and (c) provide examples of automated linguistic analyses that can be conducted with the Delaware corpus data and describe additional DementiaBank resources. METHOD: The DementiaBank discourse protocol elicits four types of discourse: picture description, story narrative, procedural, and personal narrative. The Delaware corpus currently includes data from 20 neurotypical adults and 33 adults with MCI from possible AD who completed the DementiaBank discourse protocol and a cognitive-linguistic battery. Language samples were video- and audio-recorded, transcribed, coded, and uploaded to DementiaBank. The protocol materials and transcription programs can be accessed for free via the DementiaBank website. RESULTS: Illustrative analyses show the potential of the Delaware corpus data to help understand discourse metrics at the individual and group levels. In addition, they highlight analyses that could be used across TalkBank's other clinical banks (e.g., AphasiaBank). Information is also included on manual and automatic speech recognition transcription methods. CONCLUSIONS: DementiaBank is a shared online database that can facilitate research efforts to address the gaps in knowledge about language changes associated with MCI and dementia from AD. Identifying early language markers could lead to improved assessment and treatment approaches for adults at risk for dementia.

Hippocampal subfield viscoelasticity in amnestic mild cognitive impairment evaluated with MR elastography.

Hippocampal subfields (HCsf) are brain regions important for memory function that are vulnerable to decline with amnestic mild cognitive impairment (aMCI), which is often a preclinical stage of Alzheimer's disease. Studies in aMCI patients often assess HCsf tissue integrity using measures of volume, which has little specificity to microstructure and pathology. We use magnetic resonance elastography (MRE) to examine the viscoelastic mechanical properties of HCsf tissue, which is related to structural integrity, and sensitively detect differences in older adults with aMCI compared to an age-matched control group. Group comparisons revealed HCsf viscoelasticity is differentially affected in aMCI, with CA1-CA2 and DG-CA3 exhibiting lower stiffness and CA1-CA2 exhibiting higher damping ratio, both indicating poorer tissue integrity in aMCI. Including HCsf stiffness in a logistic regression improves classification of aMCI beyond measures of volume alone. Additionally, lower DG-CA3 stiffness predicted aMCI status regardless of DG-CA3 volume. These findings showcase the benefit of using MRE in detecting subtle pathological tissue changes in individuals with aMCI via the HCsf particularly affected in the disease.

The Functional External Memory Aid Tool Version 2.0: A How-To Clinical Guide.

PURPOSE: Although compensatory cognitive rehabilitation is a common treatment approach for adults with cognitive-communication disorders, there are few assessment tools available to support clinicians in developing person-centered treatment plans. In addition to understanding a client's cognitive and functional abilities, it is also important to understand how they compensate for their weaknesses, specifically with external aids (e.g., calendars, notes), in everyday life. The Functional External Memory Aid Tool (FEMAT) is a performance-based measure that quantifies and describes external aid use during task completion. METHOD: The purpose of this clinical focus article is to educate and equip clinicians to administer and interpretate the FEMAT with adult clients with cognitive-communication disorders. This clinical focus article describes the theoretical motivation for the FEMAT as well as the administration, scoring, and interpretation procedures for Version 2.0 of the measure. A hypothetical case example is included to illustrate how to use the FEMAT to develop person-centered goals and treatment plans. CONCLUSIONS: The FEMAT is psychometrically sound, clinically relevant, free, easily accessible, and quick to administer and provides data that are complementary to data obtained from traditional performance-based and/or patient-reported measures. This clinical focus article describes new resources that are available to help clinicians administer and interpret Version 2.0 of the FEMAT when serving adults with cognitive-communication disorders. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.21651311.

Establishing severity levels for patient-reported measures of functional communication, participation, and perceived cognitive function for adults with acquired cognitive and language disorders.

PURPOSE: To empirically assign severity levels (e.g., mild, moderate) to four relatively new patient-reported outcome measures (PROMs) for adults with acquired cognitive/language disorders. They include the Communicative Participation Item Bank, the Aphasia Communication Outcome Measure, and Neuro-QoL's item banks of Cognitive Function (v2.0) and Ability to Participate in Social Roles and Activities (v1.0). METHOD: We conducted 17 focus groups that comprised 22 adults with an acquired cognitive/language disorder from stroke, Parkinson's disease, or traumatic brain injury; 30 care partners of an adult with an acquired cognitive/language disorder; and 42 speech-language pathologists who had experience assessing/treating individuals with those and other cognitive/language disorders. In a small, moderated focus-group format, participants completed "PROM-bookmarking" procedures: They discussed hypothetical vignettes based on PROM item responses about people with cognitive/language disorders and had to reach consensus regarding whether their symptoms/function should be categorized as within normal limits or mild, moderate, or severe challenges. RESULTS: There was generally good agreement among the stakeholder groups about how to classify vignettes, particularly when they reflected very high or low functioning. People with aphasia described a larger range of functional communication challenges as "mild" compared to other stakeholder types. Based on a consensus across groups, we present severity levels for specific score ranges for each PROM. CONCLUSION: Standardized, stakeholder-informed severity levels that aid interpretation of PROM scores can help clinicians and researchers derive better clinical meaning from those scores, for example, by identifying important clinical windows of opportunity and assessing when symptoms have returned to a "normal" range.

Survey Results of Speech-Language Pathologists Working With Cognitive-Communication Disorders: Improving Practices for Mild Cognitive Impairment and Early-Stage Dementia From Alzheimer's Disease.

PURPOSE: As the incidence of Alzheimer's disease (AD) continues to rise, there is a need for interventions that focus on risk reduction and early disease management. Speech-language pathologists (SLPs) can contribute to risk reduction efforts and deliver cognitive interventions; however, the nature and frequency of current clinical practice in those areas is unclear. Therefore, the purpose of this study was to conduct an exploratory survey of the cognitive-communication practices and needs of SLPs for adults with mild cognitive impairment (MCI) and early-stage dementia from AD, to inform future research and clinical training efforts. METHOD: SLPs completed an online survey that assessed five areas of practice specific to cognitive-communication and MCI and early-stage dementia: (a) education and training, (b) MCI subtype knowledge and consideration, (c) goals and treatment practices, (d) assessment of everyday living skills, and (e) general clinical practices and needs. RESULTS: One hundred fifty-seven SLPs completed the survey and represented a range of practice experience. Results revealed a discrepancy between the number of SLPs who provide services to adults with MCI or early-stage dementia and those who have received formal training to do so, suggesting a reliance on clinical practice experience. Participants primarily reported using interview and informal methods to assess daily activities and often described using compensatory-based treatments. CONCLUSIONS: These findings contribute to the limited knowledge about SLPs' cognitive-communication practices to help improve early-disease management for AD, a rapidly growing population in need of SLPs' services. More research is needed to support SLPs in being maximally effective when working with clients early in the AD continuum. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.19787728.

The use of proxies and proxy-reported measures: a report of the international society for quality of life research (ISOQOL) proxy task force.

AIMS: Proxy reports are often used when patients are unable to self-report. It is unclear how proxy measures are currently in use in adult health care and research settings. We aimed to describe how proxy reports are used in these settings, including the use of measures developed specifically for proxy reporting in adult health populations. METHODS: We systematically searched Medline, PsycINFO, PsycTESTS, CINAHL and EMBASE from database inception to February 2018. Search terms included a combination of terms for quality of life and health outcomes, proxy-reporters, and health condition terms. The data extracted included clinical context, the name of the proxy measure(s) used and other descriptive data. We determined whether the measures were developed specifically for proxy use or were existing measures adapted for proxy use. RESULTS: The database search identified 17,677 possible articles, from which 14,098 abstracts were reviewed. Of these, 11,763 were excluded and 2335 articles were reviewed in full, with 880 included for data extraction. The most common clinical settings were dementia (30%), geriatrics (15%) and cancer (13%). A majority of articles (51%) were paired studies with proxy and patient responses for the same person on the same measure. Most paired studies (77%) were concordance studies comparing patient and proxy responses on these measures. DISCUSSION: Most published research using proxies has focused on proxy-patient concordance. Relatively few measures used in research with proxies were specifically developed for proxy use. Future work is needed to examine the performance of measures specifically developed for proxies. SYSTEMATIC REVIEW REGISTRATION: PROSPERO No. CRD42018103179.

Adapting a Patient-Reported Outcome Bookmarking Task to be Accessible to Adults With Cognitive and Language Disorders.

Background Patient-reported outcome (PRO) measures produce scores that do not always have obvious clinical meaning. The PRO-bookmarking procedure is a new and promising way to make PRO measures more meaningful and interpretable. However, the materials and procedures of the task may benefit from adaptations to be more accessible to individuals with cognitive and language disorders. Aims This study aims to provide an overview of the iterative refinement process used to modify the materials and procedures of the PRO-bookmarking task so that they are more accessible to adults with acquired cognitive and language impairments. Method and Procedures Our team of health psychologists, neuropsychologists, and speech-language pathologists (SLPs) conducted two focus groups with SLPs and care partners of people with aphasia using the same PRO-bookmarking materials and procedures as previous reports. These PRO-bookmarking materials and procedures were then refined iteratively based on discussion with those who participated in focus groups and among the research team, and three more times in the course of 16 additional focus groups of different stakeholders: people with Parkinson's disease, aphasia, or traumatic brain injury; care partners of people with those conditions; and SLPs who have experience with those, and other adult-acquired conditions. Outcomes and Results The PRO-bookmarking materials and procedures underwent four iterations to make them clearer, simpler, and more accessible. For example, the materials included more structured text and graphic supports where appropriate and the procedures were clustered into smaller discrete tasks and displayed graphically when possible and appropriate. Conclusions PRO-bookmarking materials and procedures were made simpler and more structured to increase their accessibility to adults with cognitive and language impairments. In fact, these adaptations made the tasks simpler and clearer for all types of stakeholders.

Clinical Use of PROMIS, Neuro-QoL, TBI-QoL, and Other Patient-Reported Outcome Measures for Individual Adult Clients with Cognitive and Language Disorders.

Patient-reported outcome measures (PROMs) assess health outcomes from the patient's perspective. The National Institutes of Health has invested in the creation of numerous PROMs that comprise the PROMIS, Neuro-QoL, and TBI-QoL measurement systems. Some of these PROMs are potentially useful as primary or secondary outcome measures, or as contextual variables for the treatment of adults with cognitive/language disorders. These PROMs were primarily created for clinical research and interpretation of group means. They also have potential for use with individual clients; however, at present there is only sparse evidence and direction for this application of PROMs. Previous research by Cohen and Hula (2020) described how PROMs could support evidence-based practices in speech-language pathology. This companion article extends upon that work to present clinicians with implementation information about obtaining, administering, scoring, and interpreting PROMs for individual clients with cognitive/language disorders. This includes considerations of the type and extent of communication support that is appropriate, implications of the relatively large measurement error that accompanies individual scores and pairs of scores, and recommendations for applying minimal detectable change values depending on the clinician's desired level of measurement precision. However, more research is needed to guide the interpretation of PROM scores for an individual client.

Psycholinguistic features, design attributes, and respondent-reported cognition predict response time to patient-reported outcome measure items.

PURPOSE: Patient-reported outcome measures (PROMs) vary in their psycholinguistic complexity. This study examined whether response time to PROM items is related to psycholinguistic attributes of the item and/or the self-reported cognitive ability of the respondent. METHODS: Baseline data from Wave 2 of the Quality of Life in Neurological Disorders (Neuro-QoL) development study were reanalyzed. That sample contained 581 adults with neurological disorders and whose self-reported cognitive abilities were quantified by the Neuro-QoL v2.0 Cognitive Function Item Bank. 185 Neuro-QoL items were coded for several psycholinguistic variables and design attributes: number of words and syllables, mean imageability of words, mean word frequency, mean age of word acquisition, and response format (e.g., about symptom frequency or task difficulty). Data were analyzed with linear and generalized linear mixed models. RESULTS: Main effects models revealed that slower response times were associated with respondents with lower self-reported cognitive abilities and with PROM items that contained more syllables, less imageable (e.g., more abstract) words, and that asked about task difficulty rather than symptom frequency. Interaction effects were found between self-reported cognition and those same PROM attributes such that people with worse self-reported cognitive abilities were disproportionately slow when responding to items that were longer (more syllables), contained less imageable words, and asked about task difficulty. CONCLUSION: Completing a PROM requires multiple cognitive skills (e.g., memory, executive functioning) and appraisal processes. Response time is a means of operationalizing the amount or difficulty of cognitive processing, and this report indicates several aspects of PROM design that relate to a measure's cognitive burden. However, future research with better experimental control is needed.

The "Counseling+" Roles of the Speech-Language Pathologist Serving Older Adults With Mild Cognitive Impairment and Dementia From Alzheimer's Disease.

Purpose: Persons with dementia and mild cognitive impairment (MCI) are major consumers of services provided by speech-language pathologists (SLPs). These services include not only direct assessment and treatment of communication and swallowing but also counseling, collaboration, prevention, and wellness. These "counseling+" activities can be especially challenging for SLPs to deliver because of the lack of evidence, as well as the complex nature of Alzheimer's disease (AD) and other conditions that cause MCI and dementia. Method: This tutorial is written by a speech-language pathologist, a neuropsychologist, and a geriatric psychiatrist to provide education, resources, and recommendations for SLPs delivering counseling+ activities to patients with MCI and dementia from AD and related disorders. Results and Conclusions: We describe counseling+ activities across the continuum of care ranging from educating and conducting cognitive screenings with adults experiencing age-related cognitive decline to supporting end-of-life wishes. Because of their expertise in communication, SLPs can provide an array of important leading and supporting services to patients, their family, and other health care professionals on the care team, such as providing patients with appropriate feedback following a cognitive screening and helping caregivers identify the communicative intent of a responsive behavior. The demand for SLP services for patients with MCI and dementia will grow significantly over the next few decades, necessitating more systematic research and clinical evidence in this area.

Development and Initial Validation of the Functional External Memory Aid Tool.

Purpose The purpose of this study was to develop the item pool and investigate the structure and measurement properties of the Functional External Memory Aid Tool (FEMAT), a performance-based measure of everyday strategy use for persons with mild memory impairments. The FEMAT examines one's use of strategies to compensate for cognitive communication impairments that interfere with the completion of complex daily tasks. Method During Phase 1, six expert panel members reviewed the initial item pool and scoring rubric to assess item verification. Each item was developed to elicit strategy use and represent a complex daily task. During Phase 2, 99 participants with possible mild neurocognitive disorder (as determined by screening procedures) responded to 11 items. The factor structure of the data was analyzed using confirmatory factor analysis. Reliability and relationships between the FEMAT and additional factors were also examined. Results The process of development (Phase 1) resulted in 11 items distributed among three factors: (a) Medical Tasks, (b) Instrumental Daily Tasks, and (c) Retrieval-Based Tasks. Internal consistency (Phase 2), assessed with confirmatory factor analysis, confirmed the proposed three-factor model. Reliability analyses revealed at least 62%-84% of within-test score variance was due to true score variance. Correlation analyses indicated weak and strong relationships between the FEMAT and participant demographic variables and additional assessment measures. Conclusions The FEMAT provides reliable measurement of everyday external memory aid use in persons with possible mild neurocognitive disorder. The FEMAT was designed to be used in clinical settings and to provide better guidance to clinicians to design person-centered interventions than currently available cognitive communication measures.

Structured External Memory Aid Treatment for Mild Cognitive Impairment.

Purpose The aims of this study were (a) to examine the effects of a structured external memory aid (EMA) treatment for individuals with possible mild neurocognitive disorder on their use of EMAs to compensate for memory impairments, (b) to examine the extent that improved functional EMA use maintains following intervention, and (c) to measure the effects of treatment on participants' self-reported memory skills. Method The researchers employed a multiple-baseline design across subjects within dyads. Data were collected using the Roleplay Assessment. The graphed data were analyzed visually at baseline, treatment, and maintenance sessions. In addition, the researchers examined the participants' self-report of memory skills through an experimental pre-post design. Results Following intervention, a functional strategy use treatment effect was observed. All 6 participants' graphs revealed a large positive change in level, with no overlapping data. Statistical analyses also supported the positive effects of treatment. The participants maintained the use of strategies for 1-3 months. The participants self-reported a statistically significant increase in strategy use following intervention. Conclusions With treatment, individuals with mild memory impairments can learn to use EMAs to facilitate enhanced performance on functional activities. This study provides evidence for the importance of documenting individual treatment effects and using a functional measure to examine compensatory strategy use in everyday tasks.

External Memory Aid Preferences of Individuals with Mild Memory Impairments.

Individuals with mild memory impairments often rely on external memory aids (EMAs) to compensate for impaired cognitive abilities and to support independent completion of activities of daily living. These strategies are evidence based; however, professionals have limited knowledge regarding individual preferences and guidance on how to incorporate a person-centered approach into the EMA development phase. The purpose of the current study was to qualitatively investigate individuals' preferences and experiences as they relate to EMAs. Data analysis included (1) evaluation of a posttreatment questionnaire to explore individual strategy preferences following intervention and (2) evaluation of group intervention videos using thematic coding to investigate individuals' experiences with strategies during intervention. Results suggest that older adults with mild memory impairments have unique preferences and experiences, despite limited variability in demographic characteristics. Some themes that emerged included memory ability awareness and attitudes toward technology. Within a person-centered approach, skilled professionals must consider individuals' unique needs, preferences, and experiences when developing strategies throughout the continuum of care to promote sustained EMA use within everyday settings.