Design

This scoping review followed the Joanna Briggs Institute (JBI) methodology. The JBI approach to scoping reviews offers a systematic and internationally recognised method to map the extent, range and nature of evidence on a topic [22]. It emphasises clear objectives, inclusion criteria and transparent reporting following the JBI Manual and PRISMA-ScR guidelines [22–23].Conducting a scoping review is beneficial as it allows an analysis of the overview of a research area and identifies gaps in the research which can further inform future research studies [24]. A scoping review was therefore found to be an appropriate method, as evidence around the topic of adolescents’ knowledge and attitudes towards dementia is relatively new [24] and consequently the evidence for knowledge and attitude enhancing interventions are also new and have not been systematically identified and explored [25].

The scoping review protocol was registered with the Open Science Framework (https://osf.io/n4hua/) and the review is being outlined in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews [26] (S1 Appendix).

Population

This review included studies of adolescents aged between 10–19 years, according to the WHO [15] definition.

The following definitions were included: teenagers, young adults, youths, young people/young person, and juveniles within the stated age range [27–28]. Participants included adolescents who do not have any direct contact with dementia, e.g., who do not have relatives and/or friends living with dementia and adolescents who do have family and/or friends who live with dementia.

Exclusion criteria included children under the age of 10 years, young adults, and university students over the age of 19 years if specified in the studies. This review included studies irrespective of the type of dementia. These included Alzheimer’s disease, mild and severe dementia, early dementia, Lewy body, mixed, frontotemporal, and vascular dementia.

Studies were excluded if the targeted population’s data could not be extracted separately. Older adult participants with a mixed sample of neurodegenerative diseases as well as dementia were not included. Studies which involved mild cognitive impairment (MCI) were excluded due to the more significant disruptions to daily activities and social functioning which dementia poses in comparison to MCI [29]. There were no restrictions on ethnicity or gender.

Concept

The concept of this study is to examine the knowledge and attitudes adolescents hold about dementia, as well as the strategies and/or designs of interventions which have been developed to target adolescent knowledge and attitudes towards dementia. Observational and qualitative research designs and interventions examining the knowledge and attitudes of adolescents towards dementia were included.

Context

This scoping review considered studies from all geographical locations conducted across all settings (e.g., schools and community-based settings) which involve adolescents and their knowledge and/or attitudes towards dementia.

Types of sources

This scoping review considered both quantitative and qualitative primary research. Including both research methods provides a comprehensive understanding of both measurable data and experiential factors [30]. Furthermore, examining both allows to capture different perspectives and identify gaps in research [30]. This included observational study designs (e.g., descriptive or analytical cross-sectional studies), as well as experimental and quasi-experimental study designs (e.g., randomized controlled trials, before and after studies). Qualitative designs considered included, but were not limited to, designs such as phenomenology, grounded theory, ethnography, qualitative description, action research, and feminist research.

Studies published in English only were included due to limited resources within the research team to support translation. Studies published between 2000–2024 were included as they hold the most current knowledge and recent intervention practices that are most relevant to present adolescent perceptions.

Systematic reviews were excluded but were considered for relevant papers found in their reference sections. Grey literature were excluded to ensure greater consistency and quality in the evidence-base.

Search strategy

Exploratory searches of MEDLINE, PsycINFO, EMBASE, and CINAHL were undertaken to identify articles on the topic. This was followed by an analysis of the index terms used to describe the article, as well as the compositions of the words in the title and abstract. A formal search strategy was constructed for each bibliographic database around three key concepts: dementia, adolescents and knowledge and attitudes included as one key concept as key words related to each (See S2 Appendix for search terms).

A formal search was conducted to identify studies published in English between 1^st January 2000 and 15^th of April 2024. Following the search, all studies were exported to EndNote 20.2 [31]. After removing duplicates, studies were transferred from EndNote to Rayyan [32], delegated equally amongst three reviewers and abstracts were each screened independently by two of three reviewers (N.MC., S.N. & G.V.) against the eligibility criteria. Changes or conflicts were solved through discussion and consensus within the research team. This process was repeated with the full text of studies, with included articles delegated equally amongst three reviewers and independently screened by two of three reviewers (N.MC., S.N. & G.V.). The references and citation lists of the included studies were then reviewed.

Data extraction

An adapted version of the JBI Data extraction form [33] was used to extract and chart the data from included studies (See S3 Appendix), following a pilot test and refinement by authors. Data was extracted by each of the three researchers (N.MC., S.N. & G.V.) and was scrutinized for accuracy by one of the three researchers independently (N.MC., S.N. & G.V.). The extracted data included details about the author(s), year, setting, sample size, participants, study design(s), intervention(s), aim(s), finding(s), recommendation(s), and limitations relevant to the research question. Disagreements were resolved through discussion and/or with an additional independent reviewer.

Data synthesis and presentation

Data from the extraction was presented in an overall data summary table. A narrative summary of the study characteristics and findings was then developed, aligned to each study objective, with tabulated results. The TIDIER framework was used to review interventions. This framework ensures interventions are described in sufficient detail to ensure accurate interpretation and replication for future research [34]. For example, one of the components of the framework is how the intervention is delivered – this may be in person, online or by telephone conducted in groups or individually [34]. Discussion of gaps and overlaps in the literature were then discussed including further areas of research and proposals of the best intervention practices.

Study selection

The searches of the electronic databases resulted in 3917 articles in total. A total of 2918 articles were excluded based on the title and abstract, which resulted in 243 articles being retrieved and assessed in full for eligibility. After full-text review, the number of articles was reduced to nine. Through reference list and citation harvesting, 16 potentially eligible articles were full text screened from which 12 were retained. Therefore, a total of 21 articles (Table 1) were included in this scoping review. The search strategy is shown in the PRISMA-ScR flow diagram (Fig 1).

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Table 1. Data summary: Studies included in the review.

https://doi.org/10.1371/journal.pone.0322423.t001

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Fig 1. PRISMA-ScR flow diagram showing the article selection process.

https://doi.org/10.1371/journal.pone.0322423.g001

Study characteristics

Of the 21 included reports, 11 explored the knowledge and attitudes of adolescents towards dementia and ten investigated the potential of interventions to increase adolescents’ knowledge of and attitudes toward dementia. The vast majority were published in the United Kingdom (n = 6) and in Slovenia (n = 6), followed by Taiwan (n = 2), and the United States of America (n = 3). One study was published in Canada, Israel, South Africa, and South Korea, respectively. The majority of studies were completed in high income countries with one study in a low-to-middle income country [35].

Four studies exploring knowledge and attitudes of adolescents towards dementia used a cross-sectional design and questionnaires or questionnaire interviews, that were carried out in person or online [14,36–38]. One of these studies [39] included a further five reports which used the same sample but performed separate analyses for different demographics [40–44]. One qualitative study used focus group discussions [45].

Of the studies exploring interventions, seven studies used a quasi-experimental design involving surveys and for some, an embedded qualitative component [46–52]. There was one randomised controlled trial identified [53], and two qualitative studies using focus groups [54–55].

There was a considerable variation in sample sizes between studies, with the smallest study including only 4 adolescents [46], and the largest study comprising of 5825 adolescents [36]. All studies recruited high school students as their adolescent participants.

Knowledge and attitudes adolescents hold about dementia

This scoping review identified six studies and five additional reports that investigated adolescents’ objective knowledge about dementia [14,36–45]. Two studies found that the participants were able to answer less than half of the dementia knowledge questionnaires correctly [37–38]. However, only one of these studies [38] used a validated measure to assess adolescent’s knowledge (Alzheimer’s Disease Knowledge Scale). Fuh et al.’s [36] study found that overall objective knowledge of dementia was at a low standard. From the thematic analysis conducted in Parveen et al.’s [45] qualitative study, adolescents reported that they had limited knowledge of dementia.

The results of the Felc and authors study [39] which produced a further 5 reports [40–44] initially reported more positive findings, with 71.5% of adolescents able to answer correctly in a dementia knowledge questionnaire (author’s own). However, a more in-depth investigation of the items within the survey suggests significant knowledge gaps. For example, 58% of adolescents did not know that dementia can appear as inappropriate behaviour; 85% believed that it is normal to lose memory function with aging; and 77% of adolescents did not know that dementia can lead to loss of speech [39–44].

This scoping review identified three studies and two additional reports which suggested sex, family members with dementia, an urban school, and older age as predictors of better dementia knowledge [14,36,39,41,42]. There was a positive correlation of age and knowledge of dementia with older aged adolescents showing higher levels of knowledge, but this correlation was weak [42]. Those in general secondary schools scored higher on dementia knowledge compared to those in lower vocational schools [42].

Farina et al. [14] found that female adolescents demonstrated more knowledge and a better attitude towards dementia on nearly every item of the Adolescent Attitudes towards Dementia Scale (A-ADS) [56] and the adapted level of contact questionnaire for mental illness [57]. In Felc and colleague’s study [39], when presented with 20 statements about dementia, it was found that males knew significantly less about dementia than females. This was found especially when asked about the definition of dementia, and also the most common form of dementia i.e. Alzheimer’s Disease [39,41,42]. Additionally, males showed significantly less knowledge about risk factors of dementia, where they underestimated possible modifiable risk factors such as smoking, alcohol abuse, and internet addiction [42]. Fuh et al. [36] came to a similar conclusion and reported that young female adolescents were more likely to have heard about senile dementia than males and were less likely to hold the false believe that senile dementia is contagious. Contrastingly, Isaac et al. [37] explored the knowledge and attitudes of adolescents and they found adolescents’ ability to correctly answer questions about dementia was low and found no effect of school, age, or gender on knowledge.

Two studies found that adolescents with a relative or who knew someone with dementia had a better understanding of the disease. Felc [41] found that those with a relative with dementia scored higher on questions such as if dementia causes cognitive decline, if diagnoses increase with age, if Alzheimer’s is the most common dementia and if those with dementia can live at home. Fuh et al. [36] found that when questioned about their knowledge of dementia, adolescents with relatives with dementia still showed misconceptions. Around 69% of adolescents believed that senile dementia is curable; 88% thought that senile dementia is preventable; and 33% of adolescents believed that senile dementia is a normal part of the aging process. However, Fuh et al. [36] highlighted that the questionnaire used in the study focused predominantly on general impression about dementia and was less inclined to test dementia knowledge.

This scoping review identified five studies that investigated adolescents’ attitudes towards dementia [14,37,38,40,54]. Isaac et al. [37] reported mixed attitudes towards dementia with predominantly more negative attitudes towards the care for individuals with dementia. They reported 47.1% of adolescents were of the opinion that people with dementia should be in a residential home, and 59.5% of adolescents agreed that as the dementia progresses, there will be a time in which keeping the person healthy, clean, and safe is all that can be done. Felc [40] reported only 13.6% of adolescents expressed positive attitudes towards people with dementia.

This scoping review identified three studies in which the adolescents expressed a mostly positive/neutral attitude towards dementia [14,38,54]. Two studies by Farina et al. [14,54] identified that adolescents had a positive perception of dementia and in general a positive attitude towards people living with dementia. Around 80% of adolescents reported feeling positive towards dementia; 71% agreed with the statement that they would be interested in learning about the dementia experience from those affected; and the majority of adolescents agreed with the statement that they would be inclined to help individuals with dementia if they noticed them struggling [14]. In an investigation of stigma towards Alzheimer’s Disease among adolescents, Werner et al. [38] similarly concluded that stigma was low on all three dimensions (Cognitive, Behavioural, Emotional).

This scoping review identified two studies which suggested sex and family members with dementia, acted as a predictors of dementia attitudes [14,40]. The cross-sectional study by Felc [40] suggested that the negative attitudes adolescents hold towards dementia is likely rooted in a lack of dementia education and possibly caused by a relative living with dementia. More than half of the adolescents (64.5%) who had a relative with dementia held negative attitudes towards psychological and/or behavioural changes in that relative [40]. Additionally, Farina et al. [14] found that females held a better attitude towards dementia than males on nearly every item of the ‘Adolescent Attitudes towards Dementia Scale’ [14].

Key stakeholder perceptions on how adolescents’ knowledge and attitudes towards dementia can be enhanced

Adolescent stakeholders from two studies and 5 additional reports noted that adolescents wanted more information about dementia [39–45]. Felc and accompanying authors [39–44] found male and female adolescents were equally interested in learning more about dementia and that most preferred sources were internet websites (70%). Only one-third of the adolescents expressed an interest in learning about dementia from textbooks and teachers within the school setting. Even less, one-fifth of adolescents expressed an interest in learning about dementia from medical staff, such as nurses and physicians, who can educate from first hand experiences, e.g., misconceptions, how to relate to someone with dementia, and the importance of an early diagnosis [41]. It was acknowledged that most dementia knowledge is acquired by adolescents through their family members, with little information provided by teachers and television [42].

Parveen et al. [45] found that adolescents in their study would prefer interactive learning over traditional school lessons. Adolescents recognised that some large-group teaching would be necessary to convey facts and figures but felt small-group activity would be more conducive to not feeling judgement over lack of knowledge. Adolescents suggested using video clips to assist in delivering key messages on the disease to advance their learning.

None of the studies that measured attitudes assessed stakeholder perceptions of how to improve attitudes towards dementia [14,36,37,40]. Additionally, no study measured how either knowledge or attitudes of adolescents can be enhanced from adult perceptions.

Interventions

This scoping review identified ten interventions that aimed to improve the level of knowledge and attitudes about dementia amongst adolescents. To review interventions, the TIDIER framework was applied to accurately report the intervention components (Table 2) [34].

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Table 2. Intervention characteristics.

https://doi.org/10.1371/journal.pone.0322423.t002

Description of interventions

There were two intervention types identified out of the ten interventions studied: intergenerational programmes (i.e., contact interventions) which included older adults who are living with dementia, and educational workshops. The ratio of both intervention types was found to be the same in this review.

There were five educational workshops [47,50,51,53,54]. Two studies [47,54] evaluated the Dementia Friends programme. The other three educational workshop interventions [50,51,53] involved the delivery of either a dementia educational programme, a simple class on dementia or using celebrities to deliver dementia knowledge via video.

Five intervention studies were intergenerational programmes [46,48,49,52,55]. Three studies used games, activities, and conversing that involved direct interaction between adolescents and older adults with dementia to be exposed to the practicalities and traits of dementia [46,48,52]. One intervention was interactive but instead of activities both adolescents and older adults with dementia had to help the adolescents with their academic tasks [49]. One intervention encouraged both adolescents and older people to simply be in each other’s presence and to emotionally connect with each other [55].

Eight interventions were conducted in person: three in nursing home centres [46,48,49] and four in school classroom settings [47,50,54,55]. One intervention combined classroom setting, respite care centre and a senior community [52]. Two interventions were delivered solely online [51,53].

In terms of dosage, there were four brief interventions [47,48,50,54]. Both Parveen et al. [50] and Farina et al. [47] implemented a one-hour intervention. Farina et al. [54] was a 30-minute intervention and in Liao et al.’s study [48], total time of the intervention was under four hours. The other interventions ranged between 5 hours and 20 hours [46,48,49,51,55]. Saif et al. [53] was the only intervention that did not state the length of the intervention, which was an educational workshop. Similarly, with Wescott and Healy [52] no time was stated, only the duration of the intervention at a total of four weeks.

Effectiveness of interventions

Five studies evaluated interventions aiming to improve dementia knowledge as seen in Table 1. All five studies reported an increase in objective or subjective knowledge [46,50,51,53], or a perceived increase in knowledge from qualitative investigation [54]. Chow et al. [46] reported an increase to objective knowledge through an intergenerational programme between a school and a dementia care home. However, the sample size was very small (n = 4), and no control group was involved [46]. Song et al. [51] and Saif et al. [53], both online educational workshops, also found an increase in objective dementia knowledge post-intervention. Saif et al. [53] is the only randomised controlled trial and reported all four intervention groups to show an increase in knowledge of risk reduction in Alzheimer’s post intervention, most notably through the celebrity video and celebrity webinar [53]. Parveen et al. [50] found adolescents to report an increase in subjective knowledge through their ‘Dementia Detectives’ educational workshop.

Farina et al. [54] in their qualitative investigation of the ‘Dementia Friends’ educational workshop explored subjective knowledge and found that adolescents perceived an improvement in their knowledge of dementia. Four out of four education focused interventions found an increase in knowledge of dementia [50,51,53,54]. The sole intergenerational programme that measured dementia knowledge also found an increase [46].

Eight studies evaluated interventions aiming to improve attitudes towards dementia [46–49,51,52,54,55]. Four out of five intergenerational focused interventions reported an improvement in attitudes [46,48,52,55]. The remaining intergenerational intervention found no improvement in attitudes towards dementia [49]. Although McNair and Moore [49] did not find any significant changes to attitude, they found an increase in confidence in ability to help individuals with dementia.

Three out of three education-focused interventions reported an increase in attitudes [47,51] or a perceived increase in attitudes from the qualitative investigation study [54]. Farina et al. [47] used an interactive educational format and found an increase to attitudes in the KIDS questionnaire [58] and no significant change in attitudes pre and post intervention in the brief A-ADS [56]. However, the KIDS questionnaire [58] was originally developed for a younger (age 9–12) Australian sample, which may impact on confidence in this finding [47]. Farina et al. [47] had significantly more participants (n = 301) taking part in the intervention compared to Farina et al. [54] (n = 30) and Song et al. [51] (n = 32). However, even with the smaller sample size of Farina et al. [54], through their qualitative analysis of the implementation of an interactive educational intervention also found adolescents attitudes to increase. Similarly, the smaller sample size of Song et al. [51] which implemented an educational intervention online found an increase in adolescent attitudes and awareness towards dementia.

Recommendations for future research

Of the countries monitored by the WHO via the Global Dementia Observatory [4], 36/43 countries with dementia action plans include objectives to address dementia awareness, stigma reduction, and encouragement of dementia-friendly communities. The majority of research relating to dementia awareness and stigma reduction relates to the adult population [65]. In order to implement a public health approach, which is focused on improving the readiness of all groups within the general population, we urgently need to increase our understanding of dementia knowledge and attitudes among adolescents. This scoping review has identified that this is a small and underdeveloped research area, with an aligned dearth of high-quality interventions. As a priority, there is a need for more rigorous research to understand the prevalence and risk factors of poor dementia-related knowledge and negative attitudes. Research is needed which uses the validated assessment tools now available [56,69] and which is theoretically informed, ideally with a focus on identifying risk factors which may be modifiable via public health intervention. The majority of the current research utilises convenience samples with adolescents recruited from secondary schools. Research which is conducted with samples more representative of the general population would add value, alongside longitudinal research to understand if and how negative attitudes towards dementia develop. Finally, there was a dearth of high-quality evaluations of interventions identified in the scoping review. Further intervention research is needed, informed by evidence and theory. The conduct of feasibility trials would help advance the quality of the science in this area towards conducting future randomised controlled trials. The limited size and quality of the evidence-base precludes strong conclusions on implications for practice. However, the need to target adolescent knowledge of dementia, over attitudes, appears most pertinent, and use of intergenerational or educational intervention strategies.