Twitter Based Social Support for Hispanic and Black Dementia Caregivers (Tweet-S2)

Using Twitter to Enhance the Social Support of Hispanic and Black Dementia Caregivers

The prevalence of dementia is higher in Hispanics and African Americans than non-Hispanic Whites. Moreover, dementia caregivers often experience loneliness as well decreased health status. The expansion of social media use among Hispanics and African Americans, particularly Twitter - a short message service - offers great promise for improving social support. This study aims to evaluate changes of discussion topics, sentiment and networking styles (i.e., number of followers) among anonymous followers of our two Twitter networks; the African American/Black dementia caregiver group and the Hispanic dementia caregiver group.

Study Overview

• Status: Completed
• Conditions: Loneliness; Emotional Stress
• Intervention / Treatment: Behavioral: Twitter for Hispanic caregivers; Behavioral: Twitter for African American caregivers

Detailed Description

The study will utilize Twitter networks to post a daily message for dementia caregivers for a year, and set up a monthly group chat.

• Study Type: Interventional
• Enrollment (Actual): 966
• Phase: Not Applicable

Contacts and Locations

Study Locations

• United States
  • New York
    • New York, New York, United States, 10032
      • Columbia University Irving Medical Center

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: Yes

Description

Inclusion Criteria:

• 18 years of age or older
• Black or Hispanic, living in the U.S. including the U.S. territories
• a dementia caregiver with any duration, able to speak English or Spanish/bilingual
• must agree to terms of conditions of use and privacy policy and rules of one of the two dementia caregiver network (Hispanic @dcnh, Black @dcnaab), the Twitter user agreement of the terms of service, Twitter privacy policy and Twitter rules including intellectual property, violence, misconduct, abuse behavior, private information and spam and security
• use a smartphone or a feature phone (i.e., a cell phone with text messaging)

Exclusion Criteria:

• do not have de-identified Twitter account, children, not a dementia family caregiver

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Supportive Care
• Allocation: Non-Randomized
• Interventional Model: Parallel Assignment
• Masking: None (Open Label)

Number of Arms

2

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Experimental: Hispanic dementia caregivers; De-identified followers of our Hispanic dementia caregiver Twitter network will receive messages from the network (Twitter for Hispanic caregivers' intervention).	Behavioral: Twitter for Hispanic caregivers; This group will be asked to follow and use (i.e., retweet, reply, like) our Hispanic Twitter network for social support
Experimental: African American dementia caregivers; De-identified followers of our African American dementia caregiver Twitter network will receive messages from the network (Twitter for African American caregivers' intervention).	Behavioral: Twitter for African American caregivers; This group will be asked to follow and use (i.e., retweet, reply, like) our African American Twitter network for social support.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Number of Participants Who do Not Engage in Twitter Activities	Macro level: The number of participants who do not engage in Twitter activities (i.e., retweet, reply, like, post) within the Twitter network for dementia caregivers	12 months
Emotional Valence Score	Emotional valence (macro level) detected from text data (e.g., "This is so helpful": emotion score +4; "I am sad": emotion score -6). Emotional valence score ranges from -10 to +10; -10 indicates negative valence and +10 indicates positive valence.	12 months

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Number of Auto-detected Small Groups	Meso level: number of small group automatically detected based on Twitter activities (i.e., retweet); for example 0 means no small-group activity detected, 7 small groups mean seven distinct cliques/grouping activities detected where the users are communicating, supporting and responding within our Twitter network.	12 months
Percentage of Balanced Triads	Micro level: % balanced communication triad, 2 or 3 people responding and communicating with equal or similar frequency; 0 reflects non-optimal communication indicating domination, avoidance or ignorance. 8 means there are 8% triads who maintain healthy communication.	12 months

Collaborators and Investigators

• Sponsor: Columbia University
• Collaborators: National Institute on Aging (NIA); Department of Health and Human Services
• Investigators: Principal Investigator: Sunmoo Yoon, PhD, Associate Research Scientist in the Department of Medicine

Study record dates

Study Major Dates

• Study Start (Actual): January 12, 2022
• Primary Completion (Actual): October 31, 2023
• Study Completion (Actual): November 20, 2023

Study Registration Dates

• First Submitted: March 4, 2019
• First Submitted That Met QC Criteria: March 5, 2019
• First Posted (Actual): March 7, 2019

Study Record Updates

• Last Update Posted (Actual): March 25, 2025
• Last Update Submitted That Met QC Criteria: December 23, 2024
• Last Verified: December 1, 2024

More Information

Terms related to this study

• Keywords: Dementia; Family Caregivers
• Additional Relevant MeSH Terms: Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Mental Disorders; Behavioral Symptoms; Neurocognitive Disorders; Dementia; Stress, Psychological
• Other Study ID Numbers: AAAS3305; R01AG060929-01 (U.S. NIH Grant/Contract)

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No