April 4-6, 2024 • Hyatt Regency • Lexington, KY
Innovations in Health Communication
Innovations in Health Communication
Abstract: Alzheimer’s Hashtag Advocacy: A Mixed-Methods Analysis of Engagement and Discourse Around the #Endalz Campaign Across a Decade
Due to their toll on affected individuals, families, communities, and health systems, Alzheimer’s disease and related dementias (ADRD) are seen as critical and imminent public health and communication issues (Macklin, 2021). Alzheimer’s disease is a progressive neurological disorder that primarily affects one’s cognitive functions, memory, and behavior (Alzheimer’s Association, 2023a). It is the most common cause of dementia, accounting for approximately 60-70% of all dementia cases. Currently, over seven million Americans are living with ADRD, and this number is expected to at least double by 2025 (Alzheimer’s Association, 2023c).
In recent years, the discourse surrounding ADRD has evolved significantly, expanding beyond clinical research and healthcare settings to encompass the realm of public health and advocacy. Online platforms, specifically social media, provide a unique lens to capture such knowledge, as they create an accessible space for community members and allies to dialogue, foster connections and support, and strive to facilitate meaningful social change (Lattimer et al., 2023; Lattimer & Ophir, 2023). Studying online discourse on social media can help us understand how campaigns are utilized to encourage awareness and reforms, while also identifying barriers, specifically related to end-of-life care and planning (Lattimer et al., 2022). As such, scholars have examined online platforms to better understand ADRD experiences and subsequent health behaviors related to communication.
Key to ADRD online activity is the longstanding campaign under the #EndAlz hashtag. Existing for over a decade, the #EndAlz campaign is an initiative led by the Alzheimer’s Association to raise awareness and support for ADRD. The campaign aims to engage individuals, communities, and organizations. Key elements include social media engagement, advocacy and fundraising, highlighting prominent and celebrity advocates, sharing educational resources, community building, and raising awareness and promoting research efforts (Alzheimer’s Association, 2023b). Taken together, this campaign serves as a powerful and long-lasting tool to mobilize individuals and communities to take action against ADRD, offering a space for dialogue, support, and advocacy in the effort to find a cure and improve the lives of those affected by this disease.
Thus, through the lens of the Chronic Care Model (CCM; Wagner, 1998) and the Opportunity Model for Presence (OMP; Tenzek & Depner, 2017), the present study examines discourses surrounding the #EndAlz campaign on Twitter/X. Tweets were collected from January 2012 – May 2023, resulting in about 1.4 million tweets across almost a decade. Using a mixed-methods computational approach (ANTMN; Walter & Ophir, 2019), we examine how Twitter/X users harness social media through the #EndAlz campaign to discuss experiences related to ADRD, how the campaign enables or constrains elements of chronic care, and how critical moments are communicated. Additionally, we analyze how the discourse has changed in volume and thematic focus over time. Preliminary results highlight challenges related to care for both patients and caregivers, including care management, a need for support, and end-of-life planning. Theoretical and practical implications for scholars, practitioners, and those engaged in advocacy work are also discussed.
In recent years, the discourse surrounding ADRD has evolved significantly, expanding beyond clinical research and healthcare settings to encompass the realm of public health and advocacy. Online platforms, specifically social media, provide a unique lens to capture such knowledge, as they create an accessible space for community members and allies to dialogue, foster connections and support, and strive to facilitate meaningful social change (Lattimer et al., 2023; Lattimer & Ophir, 2023). Studying online discourse on social media can help us understand how campaigns are utilized to encourage awareness and reforms, while also identifying barriers, specifically related to end-of-life care and planning (Lattimer et al., 2022). As such, scholars have examined online platforms to better understand ADRD experiences and subsequent health behaviors related to communication.
Key to ADRD online activity is the longstanding campaign under the #EndAlz hashtag. Existing for over a decade, the #EndAlz campaign is an initiative led by the Alzheimer’s Association to raise awareness and support for ADRD. The campaign aims to engage individuals, communities, and organizations. Key elements include social media engagement, advocacy and fundraising, highlighting prominent and celebrity advocates, sharing educational resources, community building, and raising awareness and promoting research efforts (Alzheimer’s Association, 2023b). Taken together, this campaign serves as a powerful and long-lasting tool to mobilize individuals and communities to take action against ADRD, offering a space for dialogue, support, and advocacy in the effort to find a cure and improve the lives of those affected by this disease.
Thus, through the lens of the Chronic Care Model (CCM; Wagner, 1998) and the Opportunity Model for Presence (OMP; Tenzek & Depner, 2017), the present study examines discourses surrounding the #EndAlz campaign on Twitter/X. Tweets were collected from January 2012 – May 2023, resulting in about 1.4 million tweets across almost a decade. Using a mixed-methods computational approach (ANTMN; Walter & Ophir, 2019), we examine how Twitter/X users harness social media through the #EndAlz campaign to discuss experiences related to ADRD, how the campaign enables or constrains elements of chronic care, and how critical moments are communicated. Additionally, we analyze how the discourse has changed in volume and thematic focus over time. Preliminary results highlight challenges related to care for both patients and caregivers, including care management, a need for support, and end-of-life planning. Theoretical and practical implications for scholars, practitioners, and those engaged in advocacy work are also discussed.