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

Aijia Soong,Yin Leng Theng,Lorainne Tudor Car,Shu Ting Au,Bhone Myint Kyaw

doi:10.1186/s12877-020-1454-y

Aijia Soong, Yin Leng Theng + Show 3 more

Open Access

https://doi.org/10.1186/s12877-020-1454-y

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Abstract

BackgroundPeople 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.MethodsWe 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.ResultsTwenty 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.ConclusionCurrent 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.

Highlights

People with dementia often require full-time caregivers especially in the later stages of their condition
We aim to provide a broad scope of the current evidence by including perspectives of both people with dementia and non-professional caregivers, without any restrictions on publication date, to summarise and identify the information needs and information seeking behaviour of people with dementia and their nonprofessional caregivers
Since there is already an indicated preference for electronic sources, this approach could be adapted to deliver information to people with dementia and caregivers. This scoping review provides an overview of the literature on the information needs and information seeking behaviour of people with dementia and caregivers

Summary

Introduction

People with dementia often require full-time caregivers especially in the later stages of their condition. This study aims to provide an overview of the information needs and information seeking behaviour of people with dementia and their non-professional caregivers. There are approximately 50 million people living with dementia worldwide, with this estimate set to rise to 152 million by 2050 [3]. Dementia prevalence varies by geographic regions, with East Asia being the region with the largest number of people living with dementia, followed by Western Europe, South Asia and North America [1]. Many persons with dementia would require full-time caregivers in the advanced stages of the disease, most of whom are their family members providing informal care [6]

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