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

Abstract

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.

Development of health literacy in persons and caregivers living with dementia: A qualitative directed content analysis

“…Overall, participants identified health information needs that focused on getting through the day, what the future holds, and treatment plans. Similar findings have been reported in previous studies of caregivers, including help with daily management (Huis et al, 2018;Werner et al, 2017), disease progression (Killen et al, 2016), and information on treatment options and clinical trials (Soong et al, 2020). Differences in health information needs between persons living with dementia and caregivers in this study were few, similar to previous findings that persons living with dementia and caregivers had an 80 percent overlap in information needs (Edelman et al, 2006).…”

“…Persons living with dementia focused on understanding and appraising health information related to treatment and disease progression. These findings that persons living with dementia wanted information related to treatment and clinical trials were similar to findings reported by Soong et al (2020). Caregivers, too, were concerned about treatment and dementia progression, but they also wanted information about life tips for daily management of dementia, similar to earlier reports (Mountain & Craig, 2012;Soong et al, 2020).…”

“…Several studies have explored the health information needs of persons and caregivers living with dementia. Information needs cover a range of topics, including dementia signs and symptoms and its treatment options (Killen et al, 2016;Soong et al, 2020;Stømer, 2020), dementia progression and prognosis (Killen et al, 2016;Soong et al, 2020), and strategies to navigate daily life and to live well with dementia (Mountain & Craig, 2012;Soong et al, 2020).…”

Use of participatory action research approach to develop a self-management resource for persons living with dementia

“…Across all of these sources of information, participants identified a range of information needs that fit into four broad themes related to health care (e.g., information about illnesses causing dementia, how to recognize symptoms and how to act upon symptoms, how to work with healthcare teams, and medical and nonmedical treatments); care and support (e.g., the availability of social and other support services and how to access those services, safety considerations, and care options including long-term care placement); living well (e.g., how to transform and live with the emotional reactions of the diagnosis such as grief, loss, and anger, how to enhance communication, and how to maintain holistic wellness and quality of life in order to live well with the diagnosis); and planning ahead (e.g., how to manage activities and strategies for planning ahead including dealing with financial consequences of the diagnosis, designating powers of attorney, and end of life care). These themes are similar to those found in a recent study by Soong et al (2020). Given the differences in terms of availability of support services and processes for accessing those services across Canada, the PAR team had a number of conversations at this stage to determine how best to discuss information related to the theme of care and support.…”

“…However, written materials can often be difficult to get into the hands of persons newly diagnosed, leaving many without the information they need for effective self-management. Internet-based resources are increasingly becoming a primary source of information and advice (Allegrante et al, 2019), including with persons living with dementia and their care partners (Soong et al, 2020) and older adults (Flynn et al, 2006: Medlock et al, 2015). Advantages of sharing information via the internet include increased accessibility, interactivity, information tailoring, privacy and anonymity, and providing a more graphically and aesthetically engaging experience (Allegrante et al, 2019).…”