We identified a total of 2,447 abstracts in our preliminary search. After duplicates were removed, we screened 1,848 articles and eventually included 20 studies in this scoping study (Figure 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 (Figure 1).
Figure 1: Study flow diagram
The 20 studies comprised of ten cross-sectional studies, eight qualitative studies, and two mixed methods studies with 4,140 participants (Appendix 2). 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 eleven studies, where most of the participants had completed at least high school education.
Of the types of dementia specified in this review, 35% of studies included dementia (7, 30-35), 20% of studies included LBD (32, 35-37), 15% of studies included AD and other non-specific forms of dementia (30, 32, 35). However, 45% of studies did not specify the type of dementia (38-46). 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, 30, 31, 38).
We identified four main themes in relation to information needs, with a total of 39 reported information needs. The four information themes were disease-specific information, healthcare service-related information, patient care provision, and caregiver self-care. Information related to healthcare services was the most commonly identified theme, while patient care provision represented the category with the most diverse number of information needs.
The three most commonly mentioned needs related to dementia were general information on dementia (10 studies, 62.5%) (34-37, 40-42, 44, 46, 47), dementia treatment (7 studies, 43.7%) (7, 30, 31, 36, 45, 46, 48) and identification and understanding of dementia symptoms and behaviour (6 studies, 37.5%) (7, 37, 42, 44, 45, 48). Other information needs within this category also included dementia prognosis (6 studies, 37.5%) (7, 31, 35, 39, 41, 43), current dementia medication (5 studies, 31.2%) (34, 37, 40, 42, 48), experimental drugs and clinical trials (4 studies, 25%), current research on dementia (3 studies, 18.7%)(36, 37, 46) and genetic aspects of dementia (2 studies, 12.5%)(37, 48). The following information needs were mentioned only once (0.06%): negative impact of dementia on family and community (7), information specific to different stages of dementia (45), chance of recovery (7) and memory skills (37) (Table 2).
The need for information on negative impact of dementia on family and community was defined by Hirakawa as the physical and psychosocial burden on family and community (7). It was stated that this would help the caregivers prepare for and cope with the behavioural and psychological symptoms of dementia, as these symptoms worsen through the progression of the disease.
Patient Care Provision
Patient care provision was the category with the largest number of reported information needs, comprising 14 out of the 39 unique information needs (35.8%) identified in this review. Seven studies (53.8%) within this category indicated a need for information on how to provide general care (32-34, 37, 38, 47, 48). General care included patient hygiene, food and nutritional information and best attitudes to adopt in caring. Ways to deal with the patient’s behaviour (6 studies, 46.1%) was the second most commonly mentioned information need (32-34, 37, 38, 47), followed by safety issues (5 studies, 38.4%) (30, 31, 37, 42, 47). Safety issues encompassed information on how to improve the safety of the patient’s home environment, how to keep patient safe and how to recognise fall risks and poor mobility. Other reported information needs in this category were coping on with patient hallucinations (2 studies, 15.3%) (33, 37), navigation of communication difficulties (2 studies, 15.3%) (37, 48), activities for the patient (2 studies, 15.3%) (40, 48), first aid and medical information (2 studies, 15.3%) (7, 47) and emergency situations (2 studies, 15.3%) (30, 45). Additional seven information needs were retrieved from only one study and these were: conflict resolution (42), patient ethics (42), helpful experiences of other caregivers (37), when to transfer the patient to the hospital (7), dealing with family and friends (48) and advocating for the patient (31).
The top information need within this category was where and how to use services, and available help (14 studies, 93.3%) (7, 30, 31, 34, 36-39, 41, 42, 44-46, 48). This was also the information need that was reported by the largest number of studies, among all identified needs. Services and help referred to facilities (e.g. geriatric hospitals and nursing homes), healthcare professionals skilled in dementia diagnosis and treatment, or support groups for caregivers. Other service-related information needs were financial help and services (5 studies, 33.3%) (30, 41, 42, 44, 46), legal issues (4 studies, 26.6%) (7, 31, 42, 46), application for care programs (2 studies, 13.3%) (31, 34), and insurance (2 studies, 13.3%) (40, 46). As with the other main information themes, there were several information needs that were only stated once (0.07%). For service-related information, this included home help (35), and transportation options (31).
Self-care for the caregiver was only mentioned by four studies (7, 33, 38, 40). Two studies identified information needs for stress management (50%) (7, 33), while carer’s pension entitlements (38), managing caregiver’s emotions (33), and general caregiver self-care such as exercise, diet and medications (40) were identified by one study each (25%). This information theme had the smallest number of contributing studies and reported information needs.
Variables linked to information needs
The severity of dementia and patient/caregiver status were the only variables found to be potentially linked to particular information needs in this review.
Information needs at various stages of dementia
Caregivers of people with mild dementia were more likely to look for disease-specific information, as compared to caregivers of people with moderate to severe dementia. Both groups of caregivers required general information on dementia, identifying and understanding dementia and current dementia medication. However, those caring for people with mild dementia also needed information on genetic aspects of the disease, experimental drugs and current research on dementia while those caring for people with advanced dementia were primarily concerned about dementia prognosis (Table 3).
The severity of the patient’s condition did not affect the number of patient care provision-related information needs. While both groups of caregivers had equal numbers of patient care information needs, the subcategories of information requested did not overlap. Caregivers of people with mild dementia needed information on how to care for the patient, first aid and when to transfer a patient to the hospital. Caregivers of people with moderate to severe dementia desired medical information, information on how to deal with patient’s behaviour and safety issues.
Carers of people with moderate to severe dementia also needed more information on healthcare services. Both groups of carers required information on where and how to use available services, and how to apply for daycare programs. Caregivers of patients in more advanced stages of dementia indicated an additional need for information on financial help and services.
Patient versus caregiver information needs
Three studies investigated the needs of people with dementia alongside their caregivers (35, 37, 48). However, two of these studies did not segregate the information needs of people with dementia from caregivers, therefore we were unable to present any differences in information needs for these particular studies (35, 37).
The remaining study, that did segregate the information needs of people with dementia and their caregivers, showed that people with dementia and caregivers had a large overlap in 80% of their information needs (48). The topics of shared interest included identifying and understanding dementia, experimental drugs and clinical trials, current dementia medication, communication difficulties and how to manage them, how to deal with patient’s behaviour, and patient activities. These topics were equally distributed between disease-specific and patient care provision themes. The topics of interest specific to the caregivers were genetic aspects of the disease, and how to deal with family and friends. On the other hand, the topics of interest unique to people with dementia were clinical trials and where to find support groups. Overall, caregivers were more interested in topics specific to dementia, while people with dementia were more concerned about service-related topics such as where to find support groups for those with memory loss.
Information Seeking Behaviour
We classified information seeking behaviour into four categories, following Wilson’s model of information behaviour (23). The four categories were passive attention, passive searching, active searching and ongoing searching. Information seeking behaviour was illustrated in 12 out of 20 studies (7, 31, 32, 35-38, 40-42, 45, 48). Ten studies reported active searching behaviour (31, 32, 35, 36, 38, 40-42, 45, 48), such as when a caregiver or person with dementia actively approaches a healthcare professional for more information on their condition, or attempts to retrieve relevant information by themselves. Four studies showed passive attention behaviour (7, 35, 37, 45), where information is obtained from the environment such as when the radio or television is turned on, without the intention of information seeking. Ongoing searching was indicated in one study, where participants continued their search for information by attending seminars or facilitated forums, to expand their knowledge on the condition and its management (38). Passive searching behaviour was indicated correspondingly in one study, in which a regular behaviour such as reading of newspapers/magazines enables the person with dementia and/or their caregiver to obtain relevant information (7). Four studies gave examples of two types of information seeking behaviour (7, 35, 38, 45). Two of these studies feature contrasting information searching behaviours of active searching and passive attention (35, 45). The other two studies had similar types of information seeking behaviours and were only active (active searching, ongoing searching) (38) or passive behaviours (passive attention, passive searching) (7).
Information seeking behaviour was mainly surmised from current information sources stated within the studies. These sources for patients and/or their caregivers were stated in 14 studies (7, 30-32, 35, 37, 38, 40-43, 45, 46, 48). Of these 14 studies, six studies also mentioned desired information sources (32, 37, 38, 40, 43, 45). Two studies mentioned the preferred sources of caregivers without reference to their current information sources (36, 44). The most utilised source of information was the Internet (e.g. websites and forums) (10 studies, 71.4%) (7, 30-32, 38, 40-43, 48), followed by healthcare professionals (7 studies, 50%) (7, 31, 32, 37, 41, 45, 46), and family and friends (6 studies, 42.8%) (7, 31, 32, 37, 38, 46). The least common sources of information were bank employees (31) and clergy (46), as they were mentioned in only one study each. Other sources of information utilised include the Alzheimer’s Association, written information sources (eg. magazines, leaflets and books), electronic sources (e.g. email, smartphone apps, videos), support groups, care centres, social workers, other family caregivers, and volunteer groups (Table 4).
Figure 2. Percentage of Studies indicating Current and Preferred Information Sources
The Internet was indicated as both the most highly utilised source of information and the most desired source of information for persons with dementia and non-professional caregivers. Most of the persons with dementia and their caregivers used the Internet by browsing websites and forums to look for information. However, what people with dementia and caregivers desired when using the Internet were more specific online resources, such as a website with frequently asked questions, how-to videos for patient care and service-related information available in online portals (32, 40, 45). Unsurprisingly, other electronic sources such as mass media, smartphones, audio-visual materials and DVDs ranked equally as high as the Internet, as a preferred source of information (36, 38, 43, 45). The electronic sources requested were not dissimilar to the current electronic sources already utilised by people with dementia and their informal caregivers. Persons with dementia and caregivers showed equal preference for written information sources and both online and face-to-face support groups (50%), despite those sources not being one of the top three current information sources (36, 37, 44, 45). Electronic medical records (40), educational conferences (36), government services (38) and healthcare professionals (38) were also reported as desired information sources, in one study each (Table 4, Figure 2).
In addition to the abovementioned sources, one study also stated additional preferences on how information should be presented (45). Having information in multiple sources and languages was preferred, in order to increase its accessibility to linguistically diverse communities. Information presented through these sources should also be individualised to the different dementia syndromes and stages of the disease, as the concerns of these patients and caregivers could vary widely.