JMIR Form Res. 2023 Oct 25. 7 e48143
BACKGROUND: Past research in the Western context found that people with dementia search for digital dementia information in peer-reviewed medical research articles, dementia advocacy and medical organizations, and blogs written by other people with dementia. This past work also demonstrated that people with dementia do not perceive English digital dementia information as emotionally or cognitively accessible.OBJECTIVE: In this study, we sought to investigate the readability; linguistic, psychological, and emotional characteristics; and target audiences of digital dementia information. We conducted a textual analysis of 3 different types of text-based digital dementia information written in English: 300 medical articles, 35 websites, and 50 blogs.
METHODS: We assessed the text's readability using the Flesch Reading Ease and Flesch-Kincaid Grade Level measurements, as well as tone, analytical thinking, clout, authenticity, and word frequencies using a natural language processing tool, Linguistic Inquiry and Word Count Generator. We also conducted a thematic analysis to categorize the target audiences for each information source and used these categorizations for further statistical analysis.
RESULTS: The median Flesch-Kincaid Grade Level readability score and Flesch Reading Ease score for all types of information (N=1139) were 12.1 and 38.6, respectively, revealing that the readability scores of all 3 information types were higher than the minimum requirement. We found that medical articles had significantly (P=.05) higher word count and analytical thinking scores as well as significantly lower clout, authenticity, and emotional tone scores than websites and blogs. Further, blogs had significantly (P=.48) higher word count and authenticity scores but lower analytical scores than websites. Using thematic analysis, we found that most of the blogs (156/227, 68.7%) and web pages (399/612, 65.2%) were targeted at people with dementia. Website information targeted at a general audience had significantly lower readability scores. In addition, website information targeted at people with dementia had higher word count and lower emotional tone ratings. The information on websites targeted at caregivers had significantly higher clout and lower authenticity scores.
CONCLUSIONS: Our findings indicate that there is an abundance of digital dementia information written in English that is targeted at people with dementia, but this information is not readable by a general audience. This is problematic considering that people with <12 years of education are at a higher risk of developing dementia. Further, our findings demonstrate that digital dementia information written in English has a negative tone, which may be a contributing factor to the mental health crisis many people with dementia face after receiving a diagnosis. Therefore, we call for content creators to lower readability scores to make the information more accessible to a general audience and to focus their efforts on providing information in a way that does not perpetuate overly negative narratives of dementia.
Keywords: Alzheimer disease and related dementias; caregivers; consumer health information; natural language processing; readability