JMIR Publications

ABSTRACT

Background:

Prior research on the health information behaviors of people with dementia has primarily focused on examining the types of information exchanged by people with dementia using various online platforms. One past study has investigated the information behaviors of people with dementia within a month of their diagnosis. There is an empirical gap in the literature for understanding the evolution of health information needs and behaviors of people with dementia as their condition progresses.

Objective:

Our work primarily investigates the information behaviors of people with dementia who have been living with the condition for many (4 to 26) years. We also aim to identify their motivations for changing information behaviors over time. Our primary research question was: How and why do people with dementia get informed about their condition?

Methods:

We took an “Action Research” approach by including two people with dementia as members of our research team. Collaboratively, we conducted sixteen remote, one-hour contextual inquiry sessions with people living with mild to moderate dementia. During the study sessions, the first 40 minutes included a semi-structured interview with participants concerning their information behaviors, followed by a 20-minute demonstration of their information seeking strategies. Data from these interviews was analyzed using a constructivist grounded theory approach.

Results:

Participants described their informational needs in terms of managing the disrupted physiological, emotional, and social aspects of their lives following a diagnosis of dementia. They employed various information behaviors, including: active search, ongoing search, monitoring, proxy search, information avoidance, and selective exposure. These information behaviors were not stagnant, however, but adapted to accommodate the changing circumstances of their dementia and their lives as they worked to re-establish equilibrium for the purpose of continuing to engage in life, while living with a degenerative neurological condition.

Conclusions:

Our research reveals the motivations, changing abilities, and chosen strategies of people with dementia in their search for information as their condition evolves. This knowledge can be used to develop and improve person-centered information and support services for people with dementia so they can more easily re-establish equilibrium and continue to engage in life.