Need for and Challenges Facing Functional Communication as Outcome Parameter in AD Clinical Trials

Abstract

This paper (1) highlights the relevance of functional communication as an outcome parameter in Alzheimer disease (AD) clinical trials; (2) identifies studies that have reported functional communication outcome measures in AD clinical trials; (3) critically reviews the scales of functional communication used in recent AD clinical trials by summarizing the sources of information, characteristics, and available psychometric data for these scales; and (4) evaluates whether these measures actually or partially assess functional communication. To provide direction for future research and generate suggestions to assist in the development of a valid and reliable functional communication scale for the needs of AD clinical trials, we have included not only functional communication scales, but also related concepts that give thought-provoking impulses for the development of a functional communication scale. As outcome measures for AD clinical trials, the 6 identified papers use 6 different scales, for functional communication and for related concepts. All of the scales appear to have questionable psychometric properties, but still provide a promising basis for the creation of a functional communication scale. We conclude with concrete suggestions on how to combine the advantages of the existing scales for future research aimed at developing a valid and reliable functional communication scale for the needs of AD clinical trials.

CODEM Instrument

“…A critical review of existing instruments for assessing communication in people with dementia in terms of an individual's basic skills is given in Haberstroh et al (2013). Besides these instruments, communication skills may be partially assessed when the severity of dementia is measured during diagnostic and therapy processes, for example, by means of the Alzheimer's Disease Assessment Scale (ADAS; Rosen, Mohs, & Davis, 1984), or the Resident Assessment Instrument (RAI 2.0; Morris, Hawes, Murphy, & Nonemaker, 1995).…”

“…International literature offers two main toeholds to be used in the development of assessment instruments on the basis of how communication is theoretically embedded in dementia: (1) communication as a basic skill of an individual, e.g., in functional communication theories (e.g., Bayles & Tomoeda, 1994; Fratalli, Thompson, Holland et al, 1995; Lomas et al, 1989), (2) communication and communication behaviors as essential conditions for constructs like well-being or quality of life in dementia, as observed in certain situational contexts (e.g., Kitwood & Bredin, 1992; Perrin, 1997; Richter, Schwarz, Eisemann, & Bauer, 2003). More information on theories and assessment instruments that focus on basic communication skills can be found in Haberstroh et al (2013).…”

Clinimetric Evaluation of the Experienced Communication in Dementia Questionnaire

“…They can cause increased misunderstanding and frustration, gradually leading to restricted social participation of the person with dementia ( Schoenmakers et al, 2010 ), and CCDs have also been found to contribute to caregiver burden ( Stiadle et al, 2014 ). Therefore, there is a growing interest in the development of communication interventions that may prevent or relieve these troublesome effects of CCD ( Barnes & Markham, 2018 ; Williams et al, 2018 ) and subsequently in communication-related measurements that are able to properly evaluate these interventions ( Eadie et al, 2006 ; Haberstroh et al, 2013 ; Williams et al, 2017 ; Williams & Parker, 2012 ).…”

Communication behavior of cognitively impaired older inpatients

“…To date, there is a clear lack of suitable tools to measure communication behavior in people with dementia in a differentiated way. A shortcoming is that the existing tools operationalized communication rather as a functional skill and not as a context-dependent behavior related to well-being (for review, see [16]). Furthermore, previous instruments focused more on the verbal content than on the nonverbal relationship aspect.…”