Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: a scoping review.

BACKGROUND: People with dementia often require full-time caregivers especially in the later stages of their condition. People with dementia 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 people with dementia and their non-professional 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 4140 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. People with dementia and non-professional 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 non-professional caregivers only. The only variables found to be associated to information needs were severity of dementia condition as well as patient/caregiver status. The information needs identified in this review can be used to inform development and design of future dementia resources for people with dementia and their non-professional caregivers.

Protocol for a scoping review on information needs and information-seeking behaviour of people with dementia and their non-professional caregivers.

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 patients with dementia 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. OBJECTIVES: This is a protocol for a scoping review aimed at gathering knowledge on the information needs and information-seeking behaviour of patients with dementia and their non-professional caregivers. Our aim was 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 patients with dementia 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 PreferredReporting Items for Systematic Reviews and Meta-Analyses 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.