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Dementia is a major health concern globally and cross-culturally with progressive decline in cognition, mobility and communication. There are few interventions for end-stage dementia (ESD) although music interventions have been observed to be accessible for people with mid to late-stage dementia. The lack of protocols and measures suited to ESD has limited research into the effects of music therapy. Measure sensitivity to minimal responsiveness is one limitation to the use of existing music intervention measures with ESD. This exploratory study examined the clinical utility of the Music Therapy Assessment Tool for Awareness in Disorders of Consciousness (MATADOC) for use with people with end-stage dementia, including preliminary reliability and validity. The MATADOC is a standardized assessment for minimally responsive patients with disorders of consciousness and may be useful for ESD. Using repeated measures with blinded MATADOC-trained raters, MATADOC data were collected with a small convenience sample of people with ESD in a residential care setting. Clinical utility data were collected from the raters and evaluated using a multidimensional model. To explore its functionality, MATADOC outcomes were compared to another measure for music interventions in dementia. The MATADOC may be useful for assessing functioning and responsiveness to music interventions for people with ESD without the risk of floor effects. Modifying the MATADOC protocol and assessment documentation prior to testing with a larger sample will enhance its sensitivity specific to ESD and age-related needs, providing a new music-based ESD assessment.

Intellectual disability (ID) is defined by impairments in intellectual and adaptive functioning. As such, tools designed to assess these domains would theoretically be ideal outcome measures for treatment trials targeting core symptoms of ID. However, measures of intellectual and adaptive functioning have rarely been used as primary outcome measures to date and further study is needed regarding their usefulness to measure change. This area of inquiry is important because promising, mechanism-modifying treatments for conditions leading to ID are being initiated. To show efficacy, these treatments need to demonstrate an impact on core features of ID. After reviewing literature on this topic, we suggest solutions to several problems outlined, including use of out-of-age-range testing, alternative metrics, and development of new measures., (©AAIDD.)

Children with fragile X syndrome (FXS) display wide-ranging intellectual and behavioral abilities that affect daily life. We describe the educational setting of students with FXS and assess the relationships between school setting, co-occurring conditions, and functional ability using a national survey sample ( n = 982). The majority of students with FXS in this sample have formal individualized education plans, spend part of the day outside regular classrooms, and receive modifications when in a regular classroom. Males with FXS and certain co-occurring conditions (autism, aggression, and self-injurious behavior) are more likely to spend the entire day outside regular classrooms, compared to males without these co-occurring conditions. Students who spend more time in regular classrooms are more likely to perform functional tasks without help.