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

The world’s population is steadily ageing, with a corresponding increase in the prevalence of dementia and its disease burden [1, 2]. 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]. The cost of dementia care is limited not just to financial burden, estimated at US$818 billion globally in 2015, but also extends to the caregiver’s physical, psychological and social strain [4, 5]. As dementia progresses, people with dementia lose the ability to care for themselves and independently perform activities of daily living (ADLs) such as bathing, doing household chores, and cooking. Many persons with dementia would thus require full-time caregivers in the advanced stages of the disease, most of whom are their family members providing informal care [6].

Existing literature focuses on dementia caregivers and healthcare service needs rather than information needs [7‐10]. Education of both patient and caregiver and provision of information is crucial in the long-term management of dementia. Most persons with dementia will eventually require a caregiver in the latter stages of the condition. Majority of these caregivers are informal caregivers without prior knowledge or training in dementia care. Providing access to relevant and reliable information to these caregivers is essential to ensure continued high-quality care for the person with dementia. The most recent studies investigating information needs for persons with dementia and their caregivers reveal that these groups do not receive sufficient information, emphasizing a need to identify information that these groups require [11‐13]. There is some evidence pointing to the need for information on management of the behavioural and psychological symptoms of dementia as well as information on legal and financial issues along the course of disease progression [14, 15].

Existing reviews mostly focus on caregivers, their needs in general, or interventions to address caregiver needs, or have been undertaken more than 10 years ago [8, 10, 16]. In this scoping review, 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 non-professional caregivers. We were also interested in identifying the types of available evidence, key concepts, factors associated with information needs and information seeking behaviour as well as gaps in the existing literature. Correspondingly, we used scoping review methodology in order to fulfil the aim of providing a broad overview of all information needs and information seeking behaviour, and to determine any unmet information needs and guide development of future interventions.

We performed a thematic analysis and categorised the data according to the emerging themes in the included studies. This was done independently by two reviewers in parallel. One reviewer generated the initial themes and the second reviewer applied this in parallel to the data. Discrepancies in thematic analysis were discussed between the study authors. For new themes that emerged subsequently, the two authors discussed to reach an agreement whether to include the new generated theme or reclassify it as part of an existing theme [23]. Categories were developed using a ‘bottom-up’ approach, and were refined throughout the review process. Within each category of information need mentioned, we listed the reported information needs according to frequency mentioned. By summarizing the data numerically, we endeavour to confirm and describe the patterns or regularities within information needs and information seeking behaviour [23]. Information needs were sorted into four main themes: dementia-specific information, patient care-related information, service information and caregiver self-care related information. We evaluated the frequency of information needs and other needs by calculating the percentage of studies that were included in each information need contributing to the main information theme [24, 25]. We also performed a secondary analysis of the data exploring the associations of different variables and information needs as well as the congruence between available and preferred information sources. We sought to evaluate if variables such as sociodemographic characteristics of the population and dementia severity associated with certain information needs and information seeking behaviour. Studies with similar themes were clustered together and the count and percentage of articles in each theme was calculated and reported [26].

We identified information seeking behaviour in the studies through patients’ and/or caregivers’ information sources, and their actions as specified in the article. For example, if a caregiver stated they often turned to their family doctor for more information on dementia, we would classify that as ‘active searching’ behaviour. Information seeking behaviour was grouped according to the four categories specified in Wilson’s model of information behaviour: active searching, passive searching, ongoing searching and passive attention [21]. Active searching was defined as the individual actively seeking out information (pg 3). Passive searching was defined as “the acquisition of information that happens to be relevant to the individual” (pg 3). Ongoing searching is “where active searching has already established the basic framework of knowledge, but where occasional continuing search is carried out to update or expand one’s framework” (pg 3). Passive attention is where “information acquisition may take place without intentional seeking” (pg 3) [27]. We selected Wilson’s model over other models of information behaviour as it offered a broad summary of the context of the information need of the seeker, the type of searching employed and the information sources utilised, and was not focused on the information seeking process. For current and preferred sources of information, the sources mentioned by studies in the literature were listed according to the frequency mentioned.

We identified a total of 2447 abstracts in our preliminary search. After duplicates were removed, we screened 1848 articles and eventually included 20 studies in this scoping study (Fig. 1). After screening for titles and abstracts, we retrieved the full texts for 38 articles that explored the information needs or information seeking behaviour of people with dementia and their caregivers. From these 38 articles, we excluded seven studies that did not meet our inclusion criteria. 20 studies from 21 reports, were eventually included in this review (Fig. 1).

The 20 studies comprised of ten cross-sectional studies, eight qualitative studies, and two mixed methods studies with 4140 participants. One of the cross-sectional studies was reported twice. All studies were presented in English and published between 2002 and 2018. Four studies examined both caregiver and patient perspectives while the rest examined only the caregiver’s. With the exception of four studies that did not report caregiver-patient relationship, the majority of the caregivers were the spouses or children of the person with dementia. All studies were from high income countries, with eight studies from the USA.Sample sizes ranged from 9 to 1181, apart from one study where sample size could not be determined due to study methodology. Majority of caregivers were female and had mean ages between 55 to 70 years. Mean ages of the person with dementia was between 70 to 90 years. Living arrangements of the person with dementia was reported in 9 out of the 20 studies, and most of the persons with dementia were community dwelling except in two studies where some of the persons with dementia received long-term care in nursing homes and institutions. There were also four studies that reported the use of dementia day care services by community dwelling persons with dementia. Education level of participants was stated in 11 studies, where most of the participants had completed at least high school education (Table 1).

Of the types of dementia specified in this review, 35% of studies included dementia [7, 28‐33], 20% of studies included LBD [30, 33‐35], 15% of studies included AD and other non-specific forms of dementia [28, 30, 33]. However, 45% of studies did not specify the type of dementia [36‐44]. All 20 studies identified information needs irrespective of dementia types, however information seeking behaviour was only reported in 11 studies. Four studies further illustrated barriers to information needs and information seeking behaviour which included: lack of access, time, energy, knowledge to interpret or search for information and denial of the condition [7, 28, 29, 36].

We identified 20 studies (4140 participants) reporting the information needs and information seeking behaviour of people with dementia and their non-professional caregivers. Studies mostly focused on the information needs and information seeking behaviour of dementia caregivers, were conducted in high income countries and involved predominantly female caregivers. Most of the persons with dementia were community dwelling, with a small proportion of persons with dementia in long term institutional care. Dementia health services related information was the most commonly reported information need in the included studies. The most diverse information needs related to patient care. Severity of dementia and patient/caregiver status were the only variables observed to be associated to information needs of dementia caregivers and persons with dementia. Information seeking behaviour was reported in 14 studies, and active searching behaviour was the most commonly reported type of information behaviour. Currently, there is a lack of evidence focused on the information needs and information seeking of people with dementia, and patients with different types of dementia. More research is also required for populations in low- and middle-income countries, and for comparison of the impact of different variables on information needs and information seeking behaviour.

The results of this current review suggest that the type of information most often requested by people with dementia and their informal caregivers was where to find and use available dementia-focused healthcare services (14 out of 20 studies; Table 2). Surprisingly, this contradicted most of the available literature that we have seen. Systematic reviews exploring the needs of informal dementia care providers indicated that the most frequently reported information need was information on the disease, followed by patient care information [8, 47]. There could be several reasons for this inconsistency. We included several studies that were published after the dates of these reviews. As such, studies that were more recently published could have implied there was a shift in the focus of information needs away from the disease and towards available help and services. At the point of diagnosis, the persons with dementia and their caregivers could have been counselled on the condition to help them understand and accept the condition. However, information about formal care services may not always be adequately provided at the point of diagnosis, and this information becomes more pertinent as the patient’s condition declines [48]. As seen in our results, the severity of the patient’s dementia condition also affects the type of information required by their caregivers and the person with dementia themselves. While we are unable to establish if this was a definite contributor to the difference in information needs as both reviews did not provide the stages of dementia for their included studies [8, 47], this could have also influenced the information needs reported as caregivers usually need more help in the later stages of dementia, following the worsening of behavioural and psychological symptoms of dementia. Another possible reason would be that the focus of these systematic reviews was not on information needs, but rather on general needs, and thus did not include some of the studies and information needs that were mentioned in the current review.

In order to better understand the information preferences of persons with dementia and their informal caregivers, we also evaluated their information seeking behaviour and information sources utilised. It was reported that the most desired source of information was the one that patients and caregivers most frequently utilised (i.e. the Internet). This suggests that their information needs were unmet while using the Internet, as a result of the inability of these groups to find the information they need or the inadequacy of information available on specific websites or portals that were accessed. Our results seem to suggest that the latter was a more likely reason, as participants indicated specific resources they wished to find on the Internet, such as videos and frequently asked questions (FAQs) websites (see Table 4). The sentiment on being unable to find the specific types of information they were looking for across various information sources has also been echoed in existing literature [8]. The inability to find specific information may not be due to a lack of information, but in certain cases it could also be presented in a form that was difficult to understand by people with dementia and their caregivers. Information on the disease could have been presented using medical terms that people were not familiar with. Often, the amount of information available could be overwhelming for people with dementia and their care providers to sort through, leading them to miss what they were looking for even if it was readily available. Despite only one study in our review emphasising the need for targeted and timely information to people with dementia and their caregivers, this need is not unique based on types and severity of dementia. This was also previously iterated in two reviews [8, 49]. Future interventions focusing on information provision should take these into account when developing information resources.

An interesting finding from our review was that the top sources of information that people with dementia and caregivers preferred were electronic sources such as the Internet, mass media and smartphones. This was unexpected given that the mean ages of caregivers were between 55 to 70 years, and between 70 to 90 years for the people with dementia. Existing literature to date suggests that electronic sources were not preferred as health information sources due to a lack of awareness about what these sources could offer, rather than cost or access-related reasons [50]. As internet adoption among older adults have steadily increased over the years, the purposes for which they used the Internet for could also have changed. In 2003, the use of the Internet in older adults were mainly confined to email and general information seeking but more recent analyses in 2009 show that in addition to those purposes, health information seeking was placed as one of the more common online activities [51, 52]. Electronic sources are able to offer a variety of information independent of time and location, which could be the reason for their growing popularity as a health information source. This growing trend of information retrieval from electronic sources is not limited to the Internet but could also encompass apps for dementia care on smartphones and programmes on mass media sources [53, 54]. The living arrangements of persons with dementia would affect the caregiving roles of their informal carers, and subsequently their information needs. However, we did not find any differences between the needs of carers of community dwelling persons with dementia compared to needs of carers of persons with dementia receiving long-term institutional care. Our results also identified active searching behaviour as the most common information searching behaviour amongst all included studies, highlighting the growing acceptance of new information sources (such as smartphones and the Internet) that were previously not used by persons with dementia and caregivers.

People with dementia and caregivers also showed a preference for written information and support groups as information sources over healthcare professionals. Healthcare professionals were usually the first information source that persons with dementia and caregivers would encounter, with information about the condition being provided at point of diagnosis. However, several studies within our review expressed that the information provided was insufficient and that further information was also not provided at subsequent follow up appointments [30, 36, 39, 42]. The information provided by healthcare professionals could be of a medical nature (such as medications to manage the condition), while persons with dementia and caregivers may desire information regarding the prognosis of the condition or available community care resources and entitlements. This finding again highlights the mismatch between information needs and information sources, where healthcare professionals may not necessarily be unable to provide the information required but could be unaware of these other information needs of the patients and caregivers. Support groups and written information sources could also be more highly preferred due to their ability to provide an array of information beyond medical information.

This scoping review provides an overview of the literature on the information needs and information seeking behaviour of people with dementia and caregivers. Information needs of people with dementia and caregivers can be categorised into four themes – disease related information, healthcare services-related information, patient care provision and caregiver self-care. Information on healthcare services need to be emphasised by healthcare professionals at consultations and through preferred electronic and written sources. Caregiver self-care was also another information need that was frequently overlooked, and future research should focus on evaluation of this information need. The only variables found to be associated to information needs were the severity of dementia as well as patient/caregiver status. Information needs between caregivers and persons with dementia were found to be largely consistent, however, more research is required on this area as this was only highlighted by one study. People with dementia and caregivers actively sought for information and preferred using the Internet to look for desired information. Future interventions on information delivery to people with dementia and caregivers should focus on having required information on central platforms such as the Alzheimer’s Association website and emphasise the use of preferred electronic sources. Future research should aim to evaluate the information needs of patients and caregivers at specific stages, across various dementia syndromes and focus on variables that affect these information needs.