Twitter Support for Dementia Caregivers

(Tweet-S2 Trial)

Overseen By Mariangels de Planell Saguer, PhD

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Columbia University

Disqualifiers: No Twitter account, Not caregiver, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: Unknown

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial explores how Twitter can support dementia caregivers, particularly those who are Hispanic and African American. The main goal is to determine if using Twitter can reduce feelings of loneliness and improve connections by analyzing the types of discussions and interactions. Participants will follow a specific Twitter network designed to support their community. Ideal participants are dementia caregivers who are Black or Hispanic, living in the U.S., and comfortable using Twitter on their mobile phones. As an unphased trial, this study offers caregivers a unique opportunity to explore new ways to connect and find support through social media.

Will I have to stop taking my current medications?

The trial information does not specify whether you need to stop taking your current medications. It seems focused on social media use rather than medication changes.

What prior data suggests that this Twitter-based social support is safe for dementia caregivers?

Research has shown that using Twitter to support caregivers of people with dementia is generally safe. Studies have found that social media can help reduce loneliness and provide emotional support, with no reports of physical harm from using Twitter for this purpose.

The trial for this support method is labeled "Not Applicable" regarding phase, indicating it does not test a new drug or medical device. Instead, it examines how social media can assist people. Consequently, there are no physical side effects like those in medication trials.

In summary, using Twitter for social support for dementia caregivers is expected to be safe, as it relies on online interactions to provide emotional and social help. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about using Twitter-based social support for dementia caregivers because it's a fresh approach that taps into the power of social media to offer emotional and practical assistance. Unlike traditional support groups or therapy sessions, this method provides real-time, ongoing interaction and support, making it more accessible and flexible for caregivers who may have busy schedules. The focus on specific communities, like Hispanic and African American caregivers, also ensures culturally relevant support, which is often lacking in standard care options. This method could lead to improved caregiver well-being by fostering a sense of community and reducing isolation.

What evidence suggests that Twitter-based social support is effective for dementia caregivers?

Research has shown that using Twitter for social support can benefit those caring for someone with dementia. In studies examining Twitter groups, caregivers reported feeling more capable and supported. This trial will evaluate Twitter-based social support specifically for Hispanic and African American dementia caregivers. Participants in the Hispanic caregiver group will receive messages from a dedicated Twitter network, while those in the African American caregiver group will receive messages from a separate network. These online support groups help caregivers connect with others and feel less lonely. For both Hispanic and African American caregivers, changes in their discussions and emotions demonstrated positive effects. Participants in these Twitter groups experienced better interaction and emotional support. Overall, these findings suggest that using Twitter as a support tool can improve the well-being of dementia caregivers. ^{1 2 3 6 7}

Who Is on the Research Team?

Sunmoo Yoon, PhD

Principal Investigator

Associate Research Scientist in the Department of Medicine

Are You a Good Fit for This Trial?

This trial is for Black or Hispanic dementia caregivers living in the U.S., who are 18 or older, can speak English or Spanish, and use a smartphone. They must agree to Twitter's terms of service and privacy policies, and join one of two Twitter networks designed for their demographic.

Inclusion Criteria

Black or Hispanic, living in the U.S. including the U.S. territories

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

You have a smartphone or a cell phone with text messaging capabilities.

Exclusion Criteria

This does not apply to me as I am not a child.

You cannot participate if you have a Twitter account that is not anonymous.

You are not taking care of a family member with dementia.

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention

Participants receive daily messages and participate in monthly group chats via Twitter for a year

12 months

Follow-up

Participants are monitored for engagement and emotional valence after the intervention

4 weeks

What Are the Treatments Tested in This Trial?

Interventions

• Twitter Based Social Support

Trial Overview The study tests if using tailored Twitter support networks can affect discussion topics, sentiment, and networking (like number of followers) among Black (@dcnaab) and Hispanic (@dcnh) dementia caregivers.

How Is the Trial Designed?

Group I: Hispanic dementia caregivers Experimental Treatment 1 Intervention

De-identified followers of our Hispanic dementia caregiver Twitter network will receive messages from the network (Twitter for Hispanic caregivers' intervention).

Group II: African American dementia caregivers Experimental Treatment 1 Intervention

De-identified followers of our African American dementia caregiver Twitter network will receive messages from the network (Twitter for African American caregivers' intervention).

Who Is Running the Clinical Trial?

Columbia University

Lead Sponsor

Trials

1,529

Recruited

2,832,000+

Department of Health and Human Services

Collaborator

Trials

240

Recruited

944,000+

National Institute on Aging (NIA)

Collaborator

Trials

1,841

Recruited

28,150,000+

Citations

1. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC10369667/

Analyzing Twitter-Based Social Networks of Support ... We applied social network analysis to compare Hispanic and Black dementia caregiving networks on Twitter that were established as part of a clinical trial.

2. clinicaltrials.gov clinicaltrials.gov/study/NCT03865498

Twitter Based Social Support for Hispanic and Black ... This study aims to evaluate changes of discussion topics, sentiment and networking styles (i.e., number of followers) among anonymous followers of our two ...

3. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC12099380/

Analyzing Dementia Caregivers' Experiences on Twitter Our experimental results show that these enhancements greatly improve the performance of the conventional topic models, surpassing even state-of-the-art models ...

4. cdn.clinicaltrials.gov cdn.clinicaltrials.gov/large-docs/98/NCT03865498/Prot_SAP_000.pdf

Using Twitter to Enhance the Social Support of Hispanic ... Study Purpose and Rationale. The purpose of this study is to evaluate the impact of the Twitter-based intervention on Tweet content and social network ...

5. trialsjournal.biomedcentral.com trialsjournal.biomedcentral.com/articles/10.1186/s13063-017-2097-y

Effectiveness of an online social support intervention for ... The primary outcomes include feelings of caregiver competence and perceived social support. The secondary outcomes include received support ...

6. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC9111911/

Using Twitter to understand perspectives and experiences ... Data from Twitter can be an effective means to understand the impacts of public health emergencies among those living with dementia and how to address their ...

7. researchgate.net researchgate.net/publication/371960711_Analyzing_Twitter-Based_Social_Networks_of_Support_Communities_for_Hispanic_and_African_American_Family_Caregivers_of_Persons_with_Dementia

(PDF) Analyzing Twitter-Based Social Networks of Support ... We applied social network analysis to compare Hispanic and Black dementia caregiving networks on Twitter that were established as part of a clinical trial ...