Speaker For Nursing World Conference 2019

Title: From Noticing to Suspecting: The Initial Stages in the Information Behaviour of Informal Caregivers of People with Dementia

Agusta Palsdottir

University of Iceland, Reykjavik, Iceland


Agusta Palsdottir is currently working as a professor at the Department of Information Science, School of Social Sciences, at the University of Iceland. She received her PhD in Information Science in 2005 from Åbo Akademi University in Finland. She completed her Masters in 2005 from the University of Iceland. She has served as Associate Professor and since 2009 as Professor at the University in Iceland. Ágústa Pálsdóttir has authored several publications in various journals and books. Her publications reflect her research interests in health information behaviour and media and information literacy.


The growing number of elderly people has led to an increase in the number of people with dementia, a disease which has been declared a priority within public health.  As a result, the need to look into how the burden of their relatives, who act as their informal caregivers, can be eased has been emphasised. This calls for awareness of the caregivers’ information behaviour and how they assist people at using information for their own advantage. The paper will report from a study about the information behaviour of informal caregivers of patients with dementia. The focus will be on the time from when they begin to notice signs of the disease, until the conclusions that the patients need professional health attention has been reached. The period leading up to the decision to seek medical advice can be particularly difficult for the caregivers, as it may be filled with uncertainty and concern about what is happening to their family member. At the same time, the benefits of having dementia diagnosed at an early stage have been stressed. An early diagnosis opens up for various possibilities at treatment and care, and allows the patients and the caretakers to make plans for the future. Qualitative methods were applied and open interviews conducted with 21 caregivers. The interviews sought to address a broad range of issues related to the nature of the caregiver’s information behaviour, their information needs, how they provided the support and their experience as informal caregivers, supporting their relatives with information. The findings indicate that their information behaviour went through a sequence of three stages, in line with Holly Skodol Wilson’s temporal model: (1) Information about the disease is noticed; (2) Interpretation of information – Normalizing and discounting; (3) Suspecting – Purposive information seeking begins. The second stage was particularly complicated as the caregivers misinterpreted the information about dementia that they came across as signs of something else.