Background: Dementia is a debilitating disease that can lead to major changes in a patient’s behaviour and function. It is important to educate both dementia patients and their non-professional caregivers about the disease. Yet, currently available sources do not seem to be effective for patients and caregivers, who report a need for more information and guidance. A systematic identification of the patients’ and caregivers’ needs for information and information seeking behaviour is needed to create information resources that are relevant and beneficial to the target population.
Objective: This is a protocol for a scoping review aimed at gathering knowledge on the information needs and information seeking behaviour of dementia patients and their non- professional caregivers. Our aim is also to provide recommendations for development of future dementia information resources.
Methods: The study will commence in November 2018. Both quantitative and qualitative studies on the information needs of dementia patients or caregivers will be examined using Arksey and O’Malley’s methodological framework for scoping studies. A comprehensive literature search will be conducted in electronic databases and grey literature sources. We will also screen reference lists of included studies and related systematic reviews for additional eligible studies. Two authors will perform screening of citations for eligibility, and independently extract data from the included studies in parallel. Any discrepancies will be resolved through discussion. The findings will be presented through a narrative synthesis and reported in line with PRISMA reporting guidelines.
Ethics and dissemination: In this review, all included data will originate from published literature. Ethics approval is therefore not a requirement. We will present our findings at relevant conferences and will submit them for publication in peer-reviewed journals.
Strengths and limitations of this study
• In this scoping review, we will perform a comprehensive search of electronic databases and grey literature sources to identify up-to-date evidence on information needs and information seeking behaviour of dementia patients and their informal caregivers.
• We will seek to identify evidence on information needs and information seeking behaviour of both dementia patients and their caregivers.
• As this is a scoping review, a formal quality and risk of bias assessment of the included literature will not be performed.
• This review will only include studies published in English.