Down syndrome is a chromosomal abnormality associated with significant deficits across multiple cognitive domains, including a disproportionate deficit in hippocampally-dependent memory. In other words, individuals with Down syndrome may have a particular difficulty remembering specific details from past events. One way this manifests itself is in overgeneral autobiographical memory, or a tendency to remember the general gist of an event or cluster of events, rather than a single, isolated event. This overgeneral memory makes it difficult for individuals with Down syndrome to access their past, can interfere with attempts to becoming more independent, and increases anxiety and depression.
In the current VIRTUAL study, the investigators test whether a new digital memory prosthetic-HippoCamera-can enhance specific autobiographical memory in individuals with Down syndrome. In HippoCamera, users are asked to record and replay events from their daily lives. This replay is curated by a research-based algorithm in HippoCamera that optimizes consolidation of these events over time and has been shown to enhance memory specificity in other populations with memory impairments, particularly those that stem from hippocampal disfunction. It is, therefore, likely that similar enhancements in autobiographical memory specificity will be identified in individuals with Down syndrome, highlighting the benefits of this applications in this population.
Diagnosis of Down syndrome
Daily access to a smart phone
The ability to create and replay memories using HippoCamera with limited support from a guardian
Informed consent obtained from parent or guardian (or participant, if legally independent)
Autism
Non-native speaker of English (acquired after the age of 5)
Parallel
Memory replay
BehavioralWithin the HippoCamera application, half of all recorded events will be categorized as "baseline" memories, and half will be categorized as "replay" memories. Baseline memories are recorded, but never viewed by the participant again until the "Early HippoCamera" test at the end of the 12-week intervention. Replay memories are recorded, and then placed into a memory gallery. HippoCamera uses a research-based algorithm to select 5 memories from this gallery for participants to replay each day. Prior research has shown that this replay is associated with significant memory enhancements for replayed v. baseline memories for HippoCamera users from other populations.
Internal detail
All memory narratives will be transcribed and scored using the Autobiographical Interview protocol. Highly trained raters will score each autobiographical memory according to the number and proportion of episodic (internal) vs. semantic (external) details. Episodic details are specific to the time and place of the targeted event, whereas semantic details involve factual information or extended events that do not require recollection of a specific time and place. Memory for episodic details requires the hippocampus, whereas memory for semantic details is more resistant to hippocampal damage.
Positive memory content
All memory narratives will be transcribed and scored using a text-based sentiment analysis (Valence Aware Dictionary and sEntiment Reasoner; VADER). VADER uses natural language processing to generate a weighted composite score of each narrative's overall sentiment between -1 (highly negative) to +1 (highly positive).
Independence
Researchers will ask guardians to complete a brief survey describing participant independence. This survey will include questions about activities outside the house (e.g., work or school), social networks, and ability to perform self-care activities (e.g., feeding, dressing, etc.) independently. This survey will have a range of 0-20, with 20 indicating greater independence
Positive and Negative mood
Participants will complete the Positive and Negative Affective Schedule (PANAS), a measure of positive and negative affect that has previously been used to evaluate mood in intellectual disability. The PANAS is a 20-item self-report questionnaire with 10 positive affect feelings/emotions and 10 negative affect feelings/emotions with possible scores ranging from (lowest) 20 to (highest) 100.
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Boston College
Lead sponsor
Massachusetts General Hospital
Collaborator
University of Colorado, Denver
Collaborator
