Mohammed Saeed Azzahrani¹, Martina Spanevello¹, Ermias Girma Tsega², Mulualem Endeshaw^1*
1Rosedale Medical Center, Toronto, Canada.
²S.R.T Medstaff, Toronto, Canada.
DOI: 10.4236/aad.2025.141001   PDF    HTML   XML   68 Downloads   393 Views   Citations

Abstract

Introduction: The global aging population, including individuals with cognitive impairment, is rapidly increasing, posing significant challenges for dementia care. Cognitive impairment is characterized by progressive memory decline, difficulty acquiring new information, and reduced attention, all of which impact daily functioning and caregiving needs. Emerging technologies, particularly social media, offer innovative opportunities to support individuals with dementia and their caregivers at various stages of the condition. This scoping review aims to synthesize existing research on the use of social media in dementia care and explore its potential role in enhancing the quality of care and support for individuals living with dementia. Methods: Relevant studies were searched from: MEDLINE/PubMed, Cochrane Library, Trials Registers, Embase, and CINAHL using search terms social media and dementia care (October 24, 2024). In addition, Google Scholar and gray literature were also searched using keywords to ensure a comprehensive search. Only studies published after 2016 were included in the scoping review to get up-to-date evidence. We used thematic analysis to identify the role of social media use in dementia care. Result: A total of 20 articles published from 2017 to 2024 were included in this scoping review. The review identified six key themes that demonstrate the role of social media and technology in enhancing dementia care and promoting patient independence. The themes identified were social media as a platform for awareness and education, technology-enabled care solutions, caregiver support and empowerment, patient independence and quality of life, challenges and barriers, and cultural and linguistic considerations. Conclusion and Recommendations: Social media and technology enhance dementia care by raising awareness, supporting caregivers, and fostering patient independence and satisfaction. However, barriers like digital literacy, cost, privacy, and cultural factors hinder widespread adoption. Future research should focus on assessing the long-term effectiveness of social media in raising awareness, optimizing digital tools for dementia-friendly use, and exploring cultural and linguistic adaptations.

Keywords

Alzheimer’s Disease, Social Media Use, Technology, Dementia Care

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1. Introduction

The global population of older adults, including those with cognitive impairment, is alarmingly increasing [1]. The global prevalence of cognitive impairment varies from 7% to 34% in individuals aged 50 to 59, 5% to 38% in those aged 60 to 69, and 12% to 41% in people aged 70 and older [2]. Among Canadians aged 65 and older, the prevalence of dementia more than doubles every five years, rising from under 1% in those aged 65 to 69 to approximately 25% in those 85 and older [3]. Dementia is more common in women than men, with the disparity growing as age increases [4]. Cognitive impairment is usually marked by a gradual decline in memory, difficulty learning new things, and trouble focusing on tasks [5]. Over time, these symptoms can severely hinder an elderly person’s ability to perform daily activities, greatly affecting both the individual’s and their caregiver’s quality of life [6] [7]. Most dementia care is primarily given at home, with family caregivers; However, this care often fails to adequately meet the needs of individuals with dementia [8]. Individuals with dementia face complex challenges and symptoms across multiple areas. Care approaches should be personalized, addressing both the individual and their family caregivers [9]. Satisfying the patients’ needs, enhancing patient independence and ensuring their well-being is the central aim of dementia care.

Research-based evidence highlights that utilizing social media enhances communication and plays a crucial role in supporting dementia care [10]-[12]. Various technologies, including social media, have the potential to support individuals with dementia and their caregivers across different stages of the condition [13] [14]. However, the impact of social media on dementia care quality remains unclear. While it supports caregivers, raises awareness, fosters engagement, and enhances patient satisfaction, its effectiveness is limited by misinformation, privacy risks, digital literacy gaps, and accessibility issues. Additionally, technological disparities pose challenges for equitable use in dementia care [15]-[17]. This scoping review examines existing research on social media in dementia care and explores its potential role in enhancing care quality for individuals living with dementia.

The findings from this study will provide valuable insights to the public, donors, academics, policymakers, and other stakeholders working on neuro-cognitive disorder to effectively utilize evidence on social media’s use to improve dementia care. Scientific data on dementia care must be compiled, analyzed, and presented in an easily understandable format.

2. Methods

A scoping review was selected as the most suitable method for our research, as our goal was to map evidence on the use of social media and explore the role of social media in dementia care. To ensure a thorough and transparent approach, the study followed the Levac et al. Framework [18]. The framework consists of six key stages: 1) formulating the research question; 2) identifying relevant studies; 3) selecting studies; 4) organizing the data; 5) analyzing, summarizing, and reporting the findings; and 6) engaging with relevant stakeholders. A protocol for the review was created and registered in the Open Science Framework on October 25, 2024 https://osf.io/dashboard.

2.1. Data Source

The following databases were searched to find relevant literature such as MEDLINE/PubMed, Cochrane Library, Trials Registers, Embase, and CINAHL. In addition, Google Scholar and gray literature sources were used to make our search comprehensive. Only studies written or published in English were included. The search strategy encompassed all identified keywords and indexed terms from MESH for each selected database or information source. Reference lists of all included sources were also reviewed for additional studies. The initial search was conducted on October 20, 2024, and updated on October 26, 2024.

Search Strategy

We systematically developed a search strategy using keywords that contained 2 components: “Dementia care and Social Media” and their corresponding MeSH terms using [(“dementia” [MeSH Terms] OR “dementia” [All Fields] OR “dementias” [All Fields] OR “dementia s” [All Fields]) AND “care” [All Fields] AND (“social media” [MeSH Terms] OR (“social” [All Fields] AND “media” [All Fields]) OR “social media” [All Fields])].

2.2. Study Selection

Research on social media use in dementia care was examined, regardless of study design or setting. However, given the continuous advancements in social media and technology, only studies that provided up-to-date evidence and were published after 2016 were included. The search results from the databases were imported into Endnote, where duplicate records were eliminated. The first author performed a preliminary review of the titles and excluded any studies that were not relevant. Subsequently, all remaining studies were independently screened by the research team based on their titles and abstracts. The review process had two screening stages: a review of titles and abstracts, followed by a full-text review.

2.3. Quality Assessment

The quality appraisal of the eligible articles was checked by two independent reviewers (MSA and ME). The Joanna Briggs Institute (JBI) critical appraisal checklist was used to evaluate the quality of the selected studies. Since JBI is widely recognized in evidence-based healthcare research, it provides specific, well-defined criteria for assessing methodological quality, ensuring a transparent and standardized evaluation of primary studies. The checklist has “Yes” or “No” or “unclear” response, and “1” and “0” values were given for “yes” “no and unclear” responses, respectively; after that the summation result was changed to percentage. Articles whose JBI score was 50% and above were enrolled in the review. Disagreements at any of the eligibility assessment processes were resolved through discussions and consultation with the team of authors where necessary.

2.4. Data Extraction

After the quality assessment was conducted, data were extracted from the selected studies using a data collection form created by the authors. This form captured details such as the author(s), publication year, study area/geography, study design, type of social media/technology used, key findings, and conclusions relevant to the scoping review aim. Data extraction was conducted independently by two reviewers (MSA and ME) and any discrepancies between them were resolved by consulting other members of the authors.

2.5. Summarizing and Reporting Results

The studies were reviewed, categorized, and summarized using the data extraction format to map the existing evidence. Further, thematic analysis was also used to explore the potential roles of social media in dementia care.

3. Result

3.1. Literature Search and Selection of Studies

A total of 511 articles were searched from different data sources. After removing the duplicates and screening the titles and abstracts, 470 articles were removed from these articles. Prior to the beginning of the full-text review, 3 additional articles were also included from the references of the selected studies. Hence, a total of 44 articles were selected for full-text review. Of these 34 articles, 14 were excluded after a full-text review. Finally, 20 articles were included in this review (Figure 1).

3.2. Characteristics of the Included Studies

The included studies employed diverse research designs to explore the role of technology and social media in dementia care. Most of the studies included in this scoping review employed qualitative study designs, accounting for 35% (7 out of 20) of the total studies. These studies focused on exploring the experiences, perceptions, and behaviors of individuals, particularly caregivers and patients, in the context of dementia care and social media use. For example, Cheng et al. (2018) used qualitative methods to analyze Twitter discussions about dementia, while Bachmann (2020) examined caregivers’ experiences on various social media platforms.

Figure 1. PRISMA flow diagram for a scoping review.

Quantitative and experimental studies made up 10% (2 out of 20) of the articles. These studies used numerical data to measure and analyze specific outcomes, such as the effectiveness of social media campaigns or the impact of interventions. For instance, Castillo et al. (2021) evaluated the effectiveness of social media campaigns in raising awareness about dementia-related pain and Chan & Leung (2020) conducted an RCT to evaluate the impact of Facebook-based learning on healthcare professionals.

Review studies accounted for 10% (2 out of 20) of the articles. These studies synthesized existing evidence on specific topics, such as the use of social media for dementia research (Hrincu et al., 2022) or the role of technology in dementia care (Shu & Woo, 2021).

Additionally, cross-sectional studies 5% (1 out of 20) and mixed methods studies 5% (1 out of 20) assessed digital interventions’ effectiveness in caregiver support. Implementation studies 5% (1 out of 20) and comparative analyses 5% (1 out of 20) explored different digital platforms’ engagement effectiveness, while data mining studies 5% (1 out of 20) analyzed caregiver stress through social media discussions. Longitudinal descriptive studies 5% (1 out of 20) examined how social media activities support research and recruitment, while pilot studies 5% (1 out of 20) tested digital outreach for Alzheimer’s education. Mapping studies 5% (1 out of 20) assessed how technology integrates into dementia care pathways. The last observational study, which involves monitoring participants without intervention, also represented 5% (1 out of 20) of the articles. Lo (2023) used an observational design to examine how family caregivers use Facebook groups for support. (Table 1)

Table 1. Overview of the characteristics of the included studies.

Authors, Year	Study Design	Social media used	Objective of the Study	Key Findings	Conclusions
Cheng et al. (2018) [19]	Qualitative	Twitter	To analyze Twitteras a platform for Alzheimer-related dementia awareness	Dementia was widely discussed on Twitter, with most tweets coming fromthe US and the UK Twitter provides accessible and real-time health information for patients and caregivers to stay informed and independent	Twitter has the potential to serve as a valuable platform for raising dementia awareness,combating stigma, and providing support
Bachmann (2020) [20]	Qualitative	Social media (Various)	To analyze the experiences of caregivers on social media	Online communities offer emotional support, enabling caregivers to better manage stress and care responsibilities. Plus emotional support was most prominent discussions point	Social media enhances caregivers’ ability to manage care responsibilities
V Hrincu et al. (2022) [21]	Review	Facebook& Twitter	To analyze how Facebook and Twitter are used for dementia research	Advocacy groups led Facebook dementia talks, while researchers dominated Twitter. Prevention and treatment were key topics; diagnostics had the most engagement on Facebook	Social media aids dementia research and awareness but requires guidelines to address engagement gaps and ethical concerns
Chan & Leung (2020) [22]	RCT	Facebook	To evaluate the impact of Facebook-based learning on knowledge acquisition, engagement, and participant satisfaction	Facebook intervention boosted healthcare professionals’ engagement, retention, and compliance over email. It improved dementia knowledge, especially in communication and behavior management, with positive feedback on accessibility and interactivity	Facebook enhances dementia care education, boosting engagement, retention, and satisfaction. Social media is a valuable tool for professional learning
Ahmed et al. (2024) [23]	Qualitative	ICT-basedplatforms	Explore ways to enhance the acceptability and implementation of ICT-based healthcare for older adults with neurodegenerative diseases	Key factors for ICT adoption: user engagement, training, and media outreach. Stakeholders stress user-centered design, continuous education, and usability assessments. Barriers include the digital divide and tech resistance, requiring tailored training and awareness	A collaborative approach with users, developers, policymakers, and providers is key to ICT adoption in NDD care. Early user involvement, education, and strong communication ensure successful implementation and integration
Castillo et al. (2021) [24]	Quantitative	Social Media Campaigns	Evaluate the effectiveness of social media in pain dissemination for dementia	Raising awareness through campaigns increases recognition and management of dementia-related pain	Empowered patients and caregivers proactively seek medical intervention and symptom relief
Castillo et al. (2024) [25]	Implementation Study	Social Media Campaigns	Evaluate the #SeePainMore- Clearly campaign	The campaign successfully improved pain awareness and self-advocacy among patients and caregivers	Social media promotes proactive care-seeking behaviors and independence in health management
Lee et al. (2017) [26]	Mixed Methods	MobileApplications & Smartphones	Develop dementia care education for Asian American caregivers	Mobile apps enhance access to dementia care education, reducing caregiver stress	Improved caregiver education through digital tools promotes self-sufficiency and informed decision-making
Mendez et al. (2023) [27]	Cross-Sectional	MobileApplications& Health Technologies	Analyze the use of mobile health technologies among dementia caregivers	Technology supports health tracking and remote care coordination.	Digital tools increase caregiving confidence and independence
Shu & Woo (2021) [28]	Review	Technology& social media	Assess current and future uses of technology in dementia care	Emerging technologies allow for remote monitoring and patient engagement	Social media-integrated technologies enhance independence by enabling continuous care
M Lawless et al. (2019) [29]	Discourse Analysis	Facebook	explores how Facebook is used as a platform for requesting and offering advice on dementia risk and prevention	Facebook supports dementia advice-sharing, emphasizing individual responsibility for cognitive health. Health organizations offer guidance, while users share experiences, fostering collaboration. It serves as a valuable tool for public health communication and awareness	Facebook facilitates dementia prevention discussions but reinforces personal responsibility narratives, highlighting the need for strategic moderation
Domingo-Espiñeira et al. (2024) (Online) [30]	Comparative Analysis Tweets	Twitter	to analyze public discourse on dementia in Spanish and English tweets, comparing it with other neurological disorders	Dementia is the most discussed neurological disorder on X. English tweets focus on fear, sadness, and environmental causes, while Spanish tweets express a broader emotional range and emphasize genetic factors	X is a key platform for dementia discussions, showing linguistic differences in public perceptions. Dementia is the most discussed neurological disorder, highlighting social media’s role in understanding and shaping discourse
Lorenz et al. (2019) [31]	MappingStudy	Technology-Based Tools	Map technology-based tools onto the dementia care pathway	Technology adoption supports independent living and transitions in care	Digital tools tailored to dementia progression enhance autonomy
Gkotsis et al. (2020) [32]	Data Mining	SocialMedia Data	Study the consequences of dementia diagnosis on caregivers	Social media discussions reveal key stressors and coping mechanisms among caregivers	Insights from social media inform targeted caregiver support interventions
Yen-Chieh Lo (2023) [33]	Observational	FacebookGroups	Examine family caregivers’ use of Facebook groups	Facebook groups provide a space for emotional and informational support	Community-driven support reduces reliance on formal healthcare services
Isaacson et al. (2018) [34]	Pilot Study	AlzU.org/website	Use social media to disseminate Alzheimer’s education	Social media expands health literacy, helping individuals take charge of their health	Educated individuals make proactive lifestyle and treatment choices, promoting independence
Pickett et al. (2024) [35]	Qualitative	Reddit	To analyze Alzheimer’s- related discussions on Reddit, focusing on social support and behavioral symptoms	Reddit platforms contribute to dementia care by providing caregivers with emotional and informational support, facilitating discussions on care decisions, symptom management, and legal/financial planning	Social media platforms like Reddit provide valuable emotional and informational support for caregivers of individuals with dementia
Damant et al. (2024) [36]	Qualitativestudy	Facebook WhatsApp ZOOM	To examine the use, impact, and improvement of ICT in dementia caregiving by unpaid carers	Social media played a key role in supporting unpaid carers by facilitating communication, care coordination, and access to information. It provided emotional support, helped manage daily routines, and enabled remote caregiving	Unpaid carers primarily use mainstream ICT rather than specialized dementia care technologies
Teano et al. (2024) [37]	Longitudinal descriptivestudy	Facebook Twitter (X) You tube	To describe the social media activities used by a research center	Social media platforms like Facebook, X (Twitter), and YouTube effectively support education and research recruitment, with boosted Facebook posts significantly enhancing engagement	Social media enhances community education and research recruitment for Alzheimer’s, with outcome tracking essential for impact assessment
Tang et al. (2017) [38]	Contentanalysis of YouTube	You tube	To examine video content, cues to action about Alzheimer’s disease	Social media, particularly YouTube, contributes to Alzheimer’s awareness by sharing information on symptoms, causes, and treatments, primarily through videos from nonprofit organizations and laypersons	Mobilizing information and culturally appropriate content need improvement to better serve diverse populations

3.3. Geographical Distribution of Studies

All the included studies were published between 2017 and 2024 and originated from various parts of the world, reflecting a global perspective on the role of technology and social media in dementia care. Most of the studies are predominantly from the United States 6 studies (30%), followed by the United Kingdom 3 studies (15%) and Canada 3 studies (15%), reflecting strong research contributions from North America and Europe. Other countries or regions contributing to the studies include Spain 1 study (5%), Chinese mainland & Hong Kong SAR 1 study (5%), Taiwan region 1 study (5%), Germany & other European countries such as Italy, Portugal, Romania, and Spain 1 study (5%), Australia 1 study (5%), and Vietnam & Asian-American Communities 1 study (5%), highlighting a global research effort in dementia and caregiving. Additionally, online/global studies (2 studies, 10%) emphasize the role of social media in dementia care discussions worldwide (Table 2).

Table 2. The geographical distribution of the included studies in the review.

S/N	Author(s)	Year	Reference	Country/Region	Percentage
1	Cheng et al. [19]	2018	19	United States	30
2	Bachmann P et al. [20]	2020	20
3	Mendez et al. [27]	2023	27
4	Teano et al. [37]	2024	37
5	Tang et al. [38]	2017	38
6	Pickett et al. [35]	2024	35
7	Lorenz et al. [31]	2019	31	United Kingdom	15
8	Gkotsis et al. [32]	2020	32
9	Damant et al. [36]	2024	36
10	Domingo-Espiñeira et al. [30]	2024	30	Spain	5
11	Castillo et al. [24]	2021	24	Canada	15
12	Castillo et al. [25]	2024	25
13	V Hrincu et al. [21]	2022	21
14	Chan & Leung [22]	2020	22	Chinese mainland & Hong Kong SAR	5
15	Yen-Chieh Lo [33]	2023	33	Taiwan region	5
16	Ahmed et al. [23]	2024	23	Germany & EuropeanCountries	5
17	Lawless et al. [29]	2018	32	Australia	5
18	Lee et al. [26]	2017	26	Vietnam &Asian-American Communities	5
19	Shu & Woo [28]	2021	28	Online/Global	10
20	Isaacson et al. [34]	2018	34

3.4. Thematic Overview of the Included Studies to See the Role of Social Media

The literature identifies six key themes that demonstrate the role of social media and technology in enhancing dementia care and promoting patient independence. Social media for awareness and education examines how platforms like Twitter, Facebook, and YouTube are leveraged to increase public understanding, reduce stigma, and share educational resources about dementia. Subthemes involve global awareness campaigns, targeted outreach efforts, and the use of innovative platforms such as TikTok to reach varied audiences. Technology-driven care solutions focus on the use of assistive devices, telehealth systems, mobile applications, and virtual reality to improve patient safety, cognitive abilities, and autonomy. Subthemes include smart home technologies, wearable devices, and systems for remote monitoring. Empowerment and support for caregivers explores how digital tools and online communities offer emotional support, practical guidance, and accessible resources to caregivers, alleviating feelings of isolation and stress. Subthemes cover virtual support networks, e-learning programs, and telehealth services designed for caregivers. Patient independence and quality of life explore social media to improve awareness of pain management in dementia, leading to better patient outcomes and quality of life. Subthemes included promoting independence and pain management. Challenges and barriers identify obstacles such as limited digital literacy, usability concerns, high costs, and ethical issues like data privacy and misinformation, which impede the widespread adoption of these technologies. Subthemes address inequities in access, resistance to change, and technical difficulties such as device compatibility. Cultural and linguistic adaptations emphasize how dementia is perceived and discussed differently across cultures and languages, shaping attitudes, stigma, and caregiving approaches. Subthemes include overcoming cultural stigmas, addressing language barriers, and creating culturally appropriate digital solutions to ensure inclusivity. Collectively, these themes provide a detailed understanding of the opportunities and challenges associated with integrating social media and technology into dementia care. (Table 3)

Table 3. Thematic analysis of the included studies in the scoping review.

Themes	Subtheme	Key Findings	Relevant Studies
Social media as a Platform for Awareness and Education	Awareness Campaigns	Social media (Twitter, Facebook) is effective for raising awareness about dementia, sharing educational content, and reducing stigma.	Cheng et al. (2018), Castillo et al. (2021), Isaacson et al. (2018), Domingo-Espĩneira et al. (2024), Tang et al. (2017)
	Caregiver Education	Social media platforms provide accessible resources for caregivers, improving their knowledge and skills in dementia care.	Bachmann (2020), Lee et al. (2017), Lo (2023)
	Professional Education	Facebook and other platforms are useful for continuous professional education on dementia care, improving healthcare providers’ competencies.	Chan et al. (2020) Teano et al. (2024)
Technology-Enabled Care Solutions	ICT-Based Health Platforms	ICT platforms improve dementia care by enhancing accessibility, usability, and acceptability for older adults and caregivers.	Ahmed et al. (2024), Lorenz et al. (2019)
	Mobile Applications	Mobile apps and health technologies support dementia caregivers, particularly those with chronic conditions, by providing tools for care management and education.	Mendez et al. (2023), Lee et al. (2017)
	Future Directions	Emerging technologies (e.g., AI, VR) hold promise for advancing dementia care and promoting patient independence.	Shu and Woo (2021)
Caregiver Support and Empowerment	Emotional and Social Support	Social media groups offer emotional support, shared experiences, and advice for dementia caregivers, reducing isolation and stress.	Bachmann (2020), Lo (2023), Gkotsis et al. (2020), Damant et al. (2024), Pickett et al. (2024)
	Empowerment Through Knowledge	Access to information and peer support via social media empowers caregivers to make informed decisions and advocate for better care.	Lawless et al. (2018), Lo (2023)
Patient Independence and Quality of Life	Promoting Independence	Technology-based tools (e.g., apps, reminders) help dementia patients maintain independence by supporting daily activities and cognitive functions.	Lorenz et al. (2019), Shu and Woo (2021)
	Pain Management	Social media campaigns improve awareness of pain management in dementia, leading to better patient outcomes and quality of life.	Castillo et al. (2021), Castillo et al. (2024)
Challenges and Barriers	Implementation Challenges	Barriers to adopting ICT platforms include usability issues, lack of digital literacy, and resistance from older adults and caregivers.	Ahmed et al. (2024), Hrincu et al. (2022)
	Ethical and Privacy Concerns	The use of social media for dementia care raises concerns about data privacy, misinformation, and ethical implications.	Hrincu et al. (2022), Shu and Woo (2021)
Cultural and Linguistic Considerations	Tailored Interventions	Culturally and linguistically tailored dementia care programs are essential for diverse populations, such as Asian American caregivers.	Lee et al. (2017), Domingo-Espĩneira et al. (2024)
	Comparative Analysis	Public discourse on dementia varies across languages and cultures, highlighting the need for culturally sensitive approaches to dementia care.	Domingo-Espĩneira et al. (2024)

4. Discussion

The reviewed literature underscores the transformative potential of social media and technology in revolutionizing dementia care, with a particular focus on improving caregiving practices and enhancing patient autonomy and independence. Social media platforms such as Twitter and Facebook have emerged as vital tools for raising awareness about dementia, reducing stigma, and disseminating educational content. For example, Cheng et al. (2018) [19] demonstrated that Twitter serves as an effective medium for Alzheimer-related dementia awareness, enabling the sharing of information and resources that empower both caregivers and patients. Similarly, Isaacson et al. (2018) [34] highlighted the success of platforms like Alzheimer’s Universe (AlzU.org) in disseminating knowledge about dementia prevention and treatment, fostering a more informed and proactive community. In line with this, a systematic review done by Boots et al. (2014) [39], Leng et al. (2020) [40], and Xie et al. (2024) [41] highlights the effectiveness of online interventions in providing support to dementia caregivers, reducing stress, and improving coping mechanisms. Moreover, other studies point out the significant role of social media in raising awareness and educating the public about Alzheimer’s disease and dementia. Zhang et al. (2021) [42] and Bennett et al. (2020) [43] emphasize platforms like Facebook, Twitter, and Instagram for disseminating educational content and reducing stigma, while LaMonica et al. (2022) [44] and D’Souza et al. (2023) [45] underscore the value of online communities in providing caregiver support and accessible resources. Daynes-Kearney et al. (2023) [46] and Yin, Wang, and Liu (2023) [47] found that online support groups offer family caregivers a convenient and accessible way to connect with peers overcoming geographical and time barriers. Greenwood et al. (2022) [48] and Bacsu, JD et al. (2024) [49] highlight global campaigns and advocacy efforts on platforms like Twitter and LinkedIn, which have amplified public engagement and policy changes. Similarly, D’Souza et al. (2023) [50] also highlight that social media serves as a valuable tool for disseminating information about dementia. Additionally, Sutton et al. (2020) [51] note the creative use of TikTok and Instagram to reach younger audiences with dementia prevention strategies. Shu & Woo (2020) [52] further demonstrate the effectiveness of YouTube and WhatsApp in delivering culturally sensitive dementia education, particularly for older Chinese Americans. Collectively, these studies demonstrate social media’s effectiveness in fostering awareness, education, and community support for dementia-related issues across diverse populations.

The integration of technology-enabled care solutions in dementia care has shown significant potential in enhancing independence, safety, and quality of life for individuals with dementia. Ahmed et al. (2024) [22] and Lorenz et al. (2019) [31] emphasize the importance of designing user-friendly ICT platforms and integrating technology into the dementia care pathway, ensuring that tools are accessible and tailored to the needs of older adults. Similarly, Lancioni et al. (2021) [53] and Wang et al. (2022) [54] highlight the role of assistive and smart home technologies, such as automated lighting, wearable sensors, and voice-activated assistants, in supporting daily activities, ensuring safety, and creating a supportive environment for individuals with dementia. Span et al. (2020) [55] and Klimova et al. (2020) [56] further underscore the effectiveness of digital interventions, including mobile apps, virtual reality, and tablet-based cognitive training, in improving cognitive function, memory, and social engagement while reducing caregiver burden. Klimova et al. (2017) [57] specifically demonstrate that computer-based cognitive training can enhance memory and attention in individuals with mild cognitive impairment, though they stress the need for personalized and culturally sensitive solutions. Additionally, Meiland et al. (2017) [58] and Robinson et al. (2021) [59] highlight the importance of tailoring technologies to individual needs and addressing barriers such as digital literacy, cost, and usability to ensure widespread adoption. Ha et al. (2023) [60] also emphasize the role of telehealth platforms in providing remote support and monitoring, further enhancing accessibility for underserved populations. Collectively, these studies demonstrate the transformative potential of technology in dementia care, showcasing its ability to foster independence, improve safety, and reduce caregiver stress. However, they also call for continued innovation, user-centered design, and addressing systemic barriers to ensure these solutions are inclusive and effective for diverse populations.

Caregiver support and empowerment are critical components of improving dementia care, and social media and technology have proven to be invaluable resources in this regard. Bachmann (2020) [20] found that online communities provide caregivers with emotional support, shared experiences, and practical advice, significantly reducing feelings of isolation and stress. Similarly, Lo (2023) [33] highlighted how technology-based tools, such as mobile apps and assistive devices, can assist caregivers in managing daily activities and cognitive functions, fostering independence for individuals with dementia. Lorenz et al. (2019) [31] further elaborated on the integration of technology-based tools into the dementia care pathway, emphasizing their role in streamlining care and improving outcomes for both caregivers and patients. Bateman et al. (2017) [61] conducted a systematic review that underscored the importance of telehealth and remote monitoring technologies in reducing caregiver burden and improving access to professional support. Dam et al. (2016) [62] also emphasized the value of online platforms and digital interventions in providing caregivers with accessible resources, training, and peer support networks. Additionally, Boots et al. (2014) [39] demonstrated that web-based interventions, such as e-learning modules and virtual support groups, can enhance caregivers’ knowledge and self-efficacy. Blom et al. (2015) [63] highlighted the role of social media platforms like Facebook in creating spaces for caregivers to share experiences and access real-time advice. Collectively, these studies demonstrate that social media and technology play a transformative role in empowering caregivers by providing emotional support, practical resources, and accessible tools, ultimately improving the quality of care for individuals with dementia.

Social media and technology play a crucial role in enhancing patient independence and quality of life for individuals with dementia. Lorenz et al. (2019) [31] emphasizes the potential of technology-based tools in supporting self-management and social inclusion. Ahmed et al. (2024) [23] highlight how improving the accessibility of digital health platforms fosters greater autonomy for older adults with dementia. Cheng et al. (2018) [19] and Isaacson et al. (2018) [34] highlight how platforms like Twitter and Alzheimer’s Universe empower patients and caregivers with accessible education, fostering patient independence. Additionally, Castillo et al. (2021, 2024) [24] [25] demonstrate the effectiveness of social media campaigns in pain management, which contributes to better comfort and well-being. Isaacson et al. (2018) [34] further support the role of online education in empowering both patients and caregivers with knowledge about dementia care and prevention.

Despite the significant advancements in technology and social media for dementia care, several challenges and barriers hinder their widespread adoption. Ahmed et al. (2024) [23], V Hrincu et al. (2022) [21], Shu and Woo (2021) [28] and Lazar et al. (2017) [64] highlight key obstacles, including digital literacy gaps, usability concerns, cognitive limitation, and resistance from older adults. V Hrincu et al. (2022) [21] and Zwijsen et al. (2011) [65] also emphasize ethical and privacy concerns related to data security and the spread of misinformation on social media platforms, which must be addressed to ensure safe and effective use. Ahmed et al. (2024) [23] stress the importance of involving key stakeholders such as patients, caregivers, and healthcare providers in the design and implementation of ICT platforms to overcome these barriers. Similarly, Meiland et al. (2017) [58] note that many technology solutions are not tailored to the specific needs of individuals with dementia, leading to low adoption rates. Klimova et al. (2020) [56] and (Klimova B, et al., 2018) [66] highlight the cost of advanced technologies as a significant barrier, particularly for low-income families and underserved populations. Span et al. (2020) [55] further point out that caregivers often lack the time and training to effectively use digital tools, which limits their practicality in real-world settings. Greenwood et al. (2022) [48] and Boots et al. (2014) [39] add that lack of awareness, insufficient training, and resistance to change are major barriers to adoption. Dam et al. (2016) [62] and Blom et al. (2015) [63] emphasize ethical concerns, such as data privacy and misinformation, which undermine trust in digital platforms. Wang et al. (2022) [54] and Lancioni et al. (2021) [53] highlight technical challenges, including device interoperability and usability issues, while Robinson et al. (2021) [59] discuss disparities in access to technology, particularly in rural and low-income areas. Collectively, these studies underscore the need for user-centered design, stakeholder collaboration, policy interventions, and robust regulatory frameworks to address digital literacy, affordability, usability, ethical concerns, and equitable access, ensuring that technology and social media can be effectively integrated into dementia care.

Cultural and linguistic barriers significantly influence the effectiveness of social media as a tool for improving dementia care. Public discourse on dementia varies across languages and cultures, shaping perceptions, stigma, and caregiving practices (Domingo-Espiñeira et al., 2024) [30]. In many Asian and Middle Eastern cultures, dementia is often misunderstood or stigmatized, leading families to rely on traditional caregiving methods rather than seeking institutional support (Lee et al., 2017; Ayalon et al., 2020; Zhan, 2021) [26] [67] [68]. Additionally, language differences can hinder the accessibility of dementia-related resources on social media. Misinterpretations of dementia symptoms and treatment options due to linguistic barriers are common, particularly in Hispanic and Chinese communities, where culturally embedded terms can trivialize or misrepresent the condition Hinton et al. (2005) and Liu et al. (2020) [69] [70]. While social media has the potential to bridge these gaps by providing multilingual educational resources and fostering culturally relevant discussions, its impact depends on the extent to which platforms are designed to accommodate diverse linguistic and cultural perspectives Zheng et al. (2021) and Parker et al. (2022) [71] [72]. Culturally tailored interventions, such as targeted digital outreach and translated educational materials, have been shown to improve caregiver awareness and reduce stigma, making social media a valuable but underutilized tool in dementia care Napoles et al. (2015) and Parker et al. (2022) [72] [73]. By integrating cultural and linguistic considerations into social media strategies, healthcare professionals can enhance engagement, improve health literacy, and enable the platforms to be more inclusive and effective tools for improving dementia care across diverse populations.

To overcome barriers and maximize the benefits of social media in dementia care, a multi-faceted approach is essential. Digital literacy programs tailored for caregivers and individuals with dementia can bridge knowledge gaps and improve technology adoption. Affordable and accessible digital solutions, supported by policy incentives, can address cost-related barriers and enhance equity. Strengthening privacy regulations and ethical guidelines will ensure safe and responsible use of social media in dementia care. Additionally, culturally and linguistically adapted platforms can improve engagement across diverse populations. Collaboration between healthcare providers, researchers, and policymakers is crucial to developing evidence-based digital interventions that effectively support dementia care while mitigating risks.

In conclusion, social media and technology have significantly improved dementia care by enhancing awareness, supporting caregivers, and promoting patient independence and satisfaction. However, challenges such as digital literacy gaps, cost, privacy concerns, and cultural barriers limit their widespread adoption. Addressing these issues through inclusive and user-centered approaches is essential for maximizing their impact.

5. Recommendations

For Practitioners:

• Implement digital literacy training for caregivers and dementia patients.

• Integrate dementia-friendly social media and digital tools into care plans.

• Ensure privacy protection and culturally tailored approaches in digital interventions.

For Researchers:

• Conduct longitudinal studies on the impact of social media in dementia care.

• Optimize digital tools for dementia-friendly use and accessibility.

• Investigate barriers to technology adoption and evaluate caregiver and patient outcomes.

For Policymakers:

• Develop inclusive policies to enhance access to digital dementia care tools.

• Invest in community-based technology training programs.

• Strengthen data protection regulations and support research on digital innovations in dementia care.

Acknowledgements

We would like to thank all the primary authors of the primary studies included in this scoping review.

Author Contribution

All authors contributed to the conception and design of this scoping review. (MSA and ME) were responsible for setting the inclusion criteria, conducting the literature search, and synthesizing findings. (MSA and ME) contributed to data extraction, thematic analysis, and interpretation of results. (MS and EGT) provided critical feedback and contributed to refining the final manuscript. All authors reviewed and approved the final version of the manuscript for submission.

Conflicts of Interest

The authors declared no potential conflicts of interest with respect to the scoping review, authorship, and/or publication of this review article.

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