Information needs and information seeking behaviour of dementia patients and their caregivers: a scoping review

Abstract Background Patients with dementia often require full-time caregivers especially in the later stages of their condition. Patients and caregivers’ access to reliable information on dementia is essential as it may have an important impact on patient care and quality of life. This study aims to provide an overview of the information needs and information seeking behaviour of dementia patients and their caregivers.Methods We conducted a scoping review of the literature and searched four electronic databases for eligible studies published up to August 2018. Two reviewers independently screened studies and extracted data. Information needs were classified according to emerging themes in the literature, and information seeking behaviour was categorized using Wilson’s model of information behaviour.Results Twenty studies with a total of 4,140 participants, were included in this review. Reported information needs focused on: (i) disease; (ii) patient care provision; (iii) healthcare services; and (iv) caregiver self-care. The most commonly reported information need was on healthcare service-related information. Characteristics found to influence information needs were the severity of dementia as well as patient and caregiver status. Dementia patients and caregivers mainly displayed active searching information seeking behaviour and preferred using electronic sources to obtain health information.Conclusion Current dementia information sources available in English are extensive in the information they offer, but more emphasis needs to be placed on healthcare service-related information. All studies originated from high income countries and focused on information needs of caregiver only. The only variable found to significantly influence information needs was severity of dementia condition. The information needs identified in this review can be used to inform development and design of future dementia resources for patients and their caregivers.