Staying connected: Alzheimer's hashtags and opportunities for engagement and overcoming stigma

J Aging Stud. 2023 Sep:66:101165. doi: 10.1016/j.jaging.2023.101165. Epub 2023 Aug 2.

Abstract

Alzheimer's disease (AD) is a terminal, neurodegenerative disease, and consequently is difficult to communicate about as it is stigmatized, and discussions are rife with misconceptions. By situating AD conversations in the sociocultural space of the opportunity model of presence during the end-of-life process, a framework developed illustrating the potential trajectory from living with illness through death and into bereavement, we examined networked discussions surrounding Alzheimer's related hashtags on Twitter (N = 132,803) between January 1st, 2010, and September 29th, 2021. Using the mixed-method approach of the Analysis of Topic Model Network (ANTMN) framework, results revealed 30 topics clustered into five distinct themes: promotion, education, action, "You aren't alone", and dementia. Results indicated that discussions surrounding World Alzheimer's Day focused on changing stigma and promoting engagement in difficult conversations. The frequency of themes over time remained relatively stable. By understanding how Twitter's online discourse may be used to overcome stigmatized topics, we can continue to tailor messages to reduce stigma and provide support for those who experience similar health issues.

Keywords: Alzheimer's and Dementia; Big data; End of life; Hashtags; Misperceptions; Twitter.

MeSH terms

  • Alzheimer Disease*
  • Communication
  • Humans
  • Neurodegenerative Diseases*
  • Social Stigma