Using a Speech-Generating Device to Support Communication in Childhood Dementia

Launched by MURDOCH CHILDRENS RESEARCH INSTITUTE · Jun 25, 2025

Keywords

ClinConnect Summary

This clinical trial is studying how a special communication tool—a speech-generating device on an iPad—can help children with childhood dementia, a rare genetic condition that affects their ability to develop speech and other skills. Many children with this condition have trouble speaking or may not speak at all, so the trial wants to see if using this device can improve how they communicate. Each child will spend some time using the device and some time with their usual care (without the device), and researchers will compare how their communication changes in both situations.

Children between the ages of 3 and 12 who have a confirmed diagnosis of childhood dementia and can use an iPad by tapping on the screen may be eligible to join. They should be minimally verbal, meaning they use fewer than 20 spontaneous words, and they should not already be using a speech-generating device regularly. During the trial, participants will attend two one-hour therapy sessions each week for six weeks and complete some communication assessments. The study is currently not recruiting but will be looking for families in Victoria, Australia, who meet these criteria and are comfortable with therapy in English. This trial aims to find better ways to support children with childhood dementia in expressing themselves and connecting with others.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Is between the ages of 3 and 12 years, inclusive, at the time of enrolment
• • Has a genetically confirmed Childhood Dementia (via genetic report from a qualified geneticist), meeting the definition outlined in Elvidge et al. (2023) or is a condition listed on https://www.childhooddementia.org/what-is-childhood-dementia/childhood-dementia-disorders
• • Passes a visual-motor screening test, therefore being able to tap on an iPad spontaneously or by imitation and has adequate hearing
• • Considered "minimally verbal" with less than 20 spontaneous words (or gestalts) at baseline assessments, confirmed with the LVIS.
• • Is not currently using a speech-generating device with proficiency (i.e. using the device as a main mode of communication on a daily basis).
• • Is English-speaking or consents to therapy being conducted in English (parents will need to be able to complete the parent-reported measures in English)
• Exclusion Criteria:
• • Has an additional or dual genetic variation (as this is likely to cause multiple complications and increase variability),
• • Is extremely ill or has progressed into a later stage of their disease (i.e. child has clinically significant loss of vision, hearing, fine motor skills, or is unable to adequately attend sessions due to illness),
• • This is to ensure treatment is beneficial, reduce harm and reduce attrition rates.
• • Lives outside of the state of Victoria (making it difficult for in-person appointments)
• • Inability or unwillingness of participant or legally acceptable representative to give written informed consent.