Characterizing social communication changes in amyotrophic lateral sclerosis

Abstract

Social communication can be reduced in ALS and individuals may lack insight into these difficulties. In order to understand and provide targeted interventions for such difficulties, clinical speech and language assessment should incorporate social communication assessment, including both a self- and informant-report format.

Communication Matters—Pitfalls and Promise of Hightech Communication Devices in Palliative Care of Severely Physically Disabled Patients With Amyotrophic Lateral Sclerosis

“…For other measures, caregivers report a clinical relevant apathy for up 40–60% of the ALS-patients ( 139 , 146 , 147 ). The significance of apathy for communication and social interaction is in accordance with the finding that caregivers and next of kin report a reduced initiation of conversations by the ALS-patients compared to premorbid behavior ( 66 , 146 ) to show a reduced initiation of conversations. It can be moreover assumed that a lack of motivation up to apathy might especially affect communication by means of HT-AAC, regarding the high effort that is required for training and use of such devices for communication purposes, e.g., choosing every letter of a message via eye movement.…”

“…However, it must also be considered at this point that some patients may suffer a loss of awareness or insight in their situation or a reduced ability to judge it, as executive functioning ( 63 – 65 ) and social cognition including empathy are impaired in a proportion of non-demented patients ( 66 – 68 ); an issue that is further discussed in chapter Cognitive and behavioral impairment and its consequences for HT-AAC-use.…”

“…This assumption is importantly supported by findings of changes in social behavior observed by primary caregivers: 70% showed an increased self-centeredness and a reduced interest for the feelings of others persons ( 139 ). A study by Fisher et al ( 66 ) further suggests a lack of patients' insight into their social cognition and consequently social behavior impairment and therefore a lack of awareness of its effect on communication and interaction partners, which can be assumed to even increase the burden due to this impairment for the next of kin.…”

Spousal recollections of early signs of primary progressive aphasia

“…) has recently been found to be sensitive to social communication changes in partners with amyotrophic lateral sclerosis (Fisher et al . ).…”

“…The development of a structured interview and/or questionnaire for use with close others may be beneficial to guide clinician discussions about earlyonset cognitive-communication changes as well as highlight useful strategies to deal with them. To this end, we note that a study focused on close others (predominantly spouses) using the La Trobe Communication Questionnaire (Douglas et al 2000) has recently been found to be sensitive to social communication changes in partners with amyotrophic lateral sclerosis (Fisher et al 2017).…”