Introduction
Dementia is an umbrella term for a collection of diseases and disorders that cause degenerating neurology and ongoing decline of cognitive function that interferes with daily activities, including memory, problem-solving, behaviour, concentration, and motor skills among others (Grossman et al., Reference Grossman, Bergmann and Parker2006; World Health Organization, 2022; Maheshwari et al., Reference Maheshwari, Singh, Ansari, Mahmood, Wasim, Akhtar and Verma2024). Dementia care costs the UK £23–34.7 billion a year, placing significant emotional, economical, and welfare needs on the NHS, the individual, and unpaid care from family members or extended support network (Brown et al., Reference Brown, Ruggiano, Li, Clarke, Kay and Hristidis2019; Wittenberg et al., Reference Wittenberg, Knapp, Hu, Comas-Herrera, King, Rehill, Shi, Banerjee, Patel, Jagger and Kingston2019; Alzheimer’s Society, 2023; NHS, 2023). Furthermore, there are delays between diagnosis and initial appointments that currently leave needs unmet. This pilot study explores the potential for interactive learning materials with narrative styling for engaging readers and their families with information to support dementia care through evaluative surveys.
Dementia and digital support initiatives
Previous initiatives into using digital media as a tool for improving healthcare support have identified conversational interactivity and family centredness as key aspects for improving communication and care in new toolset development. For example, Muñoz et al. (Reference Muñoz, Favilla, Pedell, Murphy, Beh and Petrovich2021) created a collection of iPad gaming activities themed around different activities or interests to facilitate interaction between carer and person living with dementia, resulting in more frequent and high-quality interactions between staff and patient but with some difficulties in user operation. Zachos et al. (Reference Zachos, Maiden, Pitts, Jones, Turner, Rose, Pudney and Macmanus2013) developed a digital app for staff to facilitate decision-making for personalizing creative thought processing in dementia care plans, resulting in generating new and bespoke care strategies but encountering barriers to consistent adoption in workplaces. Employing interactive and conversational digital care tools may therefore help to alleviate the pressure placed on health and social care providers and family members whilst also facilitating quality interactions with the patient, especially in the early stages of dementia (Yamagata et al., Reference Yamagata, Coppola, Kowtko and Joyce2013). There remains a need to develop systems for supporting healthcare conditions with care worker, patient, family, and researcher collectively (Swarbrick et al., Reference Swarbrick and Keady2019).
Family centredness involves embedding the family within the care plan to improve holistic capacity (Hao and Ruggiano, Reference Hao and Ruggiano2020). For example, Smith et al. (Reference Smith, Morton and Van Rooyen2022) showed the benefit of family caregiving for assisting people living with dementia. However, communication between family members, family caregivers, and professional caregivers can be a frequent challenge and can often increases tensions (Smith et al., Reference Smith, Morton and Van Rooyen2022). Toivonen et al. (Reference Toivonen, Charalambous and Suhonen2023) found that spiritual understanding and provisions of nursing care was beneficial for people living with dementia, but current nursing provisions were insufficient and would require bespoke understanding. When developing holistic care plans, involving relatives and friends is promoted as good practice but there is reportedly little evidence-based research and investigation for developing effective processes (Jackson et al., Reference Jackson, Erwich, Flynn and Olorunnisola2022). In addition, books for children that are themed around dementia have been created to promote the maintenance of relationships within the family, but some are found to have strong tones of ageism and contradictory imagery, often focusing on the fictional narrative rather than healthcare education (Caldwell et al., Reference Caldwell, Falcus and Sako2021). It is therefore important to avoid extensive fictional or narrative elements and instead ensure that sufficient learning materials are delivered. Incorporating family centredness and interaction within support initiatives may therefore be an effective approach towards improving communication between family members and care givers when supporting those living with dementia.
Narrative software as an education tool in health
Game creation and digital storytelling tools have received relatively little attention in assisting people living with dementia but good success, with most involving filmographic media (Rios Rincon et al., Reference Rios Rincon, Miguel Cruz, Daum, Neubauer, Comeau and Liu2022). Liu (Reference Liu2023) developed interactive games for family caregivers of people with dementia to inform their understanding and caregiving of dementia. Liu et al. (Reference Liu, Tuah and Miao2022) support the use of digital storytelling tools, interactive learning, and brain training for dementia support, which Muñoz et al. (Reference Muñoz, Favilla, Pedell, Murphy, Beh and Petrovich2021), Tarraga (Reference Tarraga2006), and Yamagata et al. (Reference Yamagata, Coppola, Kowtko and Joyce2013) have shown to stimulate cognitive abilities in dementia patients. Alternatively, digital storytelling and gamification have shown potential in supporting education in mental health that the current study can incorporate findings from. Previous initiatives have shown that digital gamification promotes active and multi-sensory engagement and retention of learning across ages (Cheung and Ng, Reference Cheung and Ng2021, Behnamnia et al., Reference Behnamnia, Kamsin, Ismail, Hayati, Behnamnia, Kamsin, Ismail and Hayati2022) and have been particularly effective when educating healthcare and pharmacological students (Lam et al., Reference Lam, Gutierrez, Goad, Odessky and Bock2019, Sandrone and Carlson, Reference Sandrone and Carlson2021). Lam et al. (Reference Lam, Gutierrez, Goad, Odessky and Bock2019) incorporated the game Mimycx into a flipped classroom to show that gamification of learning is received positively, and Litvin et al. (Reference Litvin, Saunders, Maier and Luttke2020) observed increases in self-reported mental health resilience in participants using an app with gamified intervention resources compared against participants using traditional resources. These initiatives therefore support the inclusion of care provider when designing gamified dementia resources.
Gamified media creation tools that offer increasingly reduced barriers to entry and sharing promote the prospects of narrative education and mental health materials (Chen, Reference Chen2021; Fiadotau, Reference Fiadotau2022). For example, Fiadotau (Reference Fiadotau2022) investigated mental health-focused resources created using Bitsy, an online game creation tool for making top-down interactable game environments and stories with pixel art, finding a small cache of games available, with anxiety and depression being the most frequent theme covered. These games were restricted by the functionality of Bitsy and provided limited healthcare education or support but were highly expressive in their portray of mental health (Fiadotau, Reference Fiadotau2022). These examples show the education potential for interactive media in healthcare and education but with improved accessibility and simplicity for a general population. The current study explores the use of Twine for digital storytelling and gamified media creation.
Twine as an education tool
Twine is an open-source software for producing interactive and non-linear story-based media (Klimas, Reference Klimas2009). Stories are built by hyperlinking text passages together with clickable low-code options for improved interactivity and accessibility to non-experts (Friedhoff, Reference Friedhoff2013; Bruckner et al., Reference Bruckner, Baumann, Husinsky, Jakl, Püringer, Von Suess, Vogt and Wintersberger2022). This potentially makes Twine more readily accessible for untrained users to create stories at short time intervals because of the text-driven approach rather than the paintable pixels and gamified approach in Bitsy. Friedhoff (Reference Friedhoff2013) discusses how the creation interface, content generation, and open-access platform make it make it well-suited for interactive and strongly personalized storytelling. Twine may therefore be pertinent to health and social care; Salter (Reference Salter2016) showed that creating branching pathways in Twine on interactive stories about mental health promoted agency and empathy.
Twine has been used to facilitate education in several disciplines. For example, organic chemistry laboratory protocols were processed into Twine stories to allow students to digitally follow the procedure when access was limited during COVID-19 restrictions (Saluga et al., Reference Saluga, Peacock, Seith, Boone, Fazeli, Huynh, Luo, Naghi and Link2022). Forensic science students created their own non-linear stories into death scene investigation, resulting in improved subject understanding when supplementing lectures (Thompson, Reference Thompson2020).
Overall, improving communication between family members and the health and care workers may improve the holistic capacity of the provided care through family centredness. There is scope to develop family-centred care products with a focus on assisting the wider support network, family and children. The current project therefore aimed to create free, accessible interactive and educational narrative media to engage and support people living with dementia and their families.
Methods
Grandad Forgot My Name was developed by creating narrative pathways in Twine (Version 2.7.0), using Sugarcube 2 format and hosted on itch.io for free public access. Images were digitally created in 1600 × 600 pixels using Procreate 5.3.6. One pathway focused on children and their understanding of dementia whereas three pathways focused on providing information materials for adults (Figure 1). Grandad Forgot My Name is available at: https://healthstory.itch.io/grandad-forgot-my-name and was shared with the public via social media, news websites, leaflets in residential homes and public venues, and at scientific outreach events.
Twine pathway structure for the Grandad Forgot My Name stories. Each box contains the written story element, linked together through arrows. The whole project was created within one Twine file, with child and adult pathways separated to each side. The reader does not view this file.
Story pathways
Currently in healthcare research, there is still focus on the clinical side with omission of public involvement beyond participation (Malterud and Elvbakken, Reference Malterud and Elvbakken2020). Grandad Forgot My Name aimed to incorporate those with dementia directly in this project via ongoing survey and Alzheimer workshops, contributing towards co-research and development of help materials. This reflects the COINED model, where people living with dementia form the framework of research and become involved as co-researchers (Morbey et al., Reference Morbey, Harding, Swarbrick, Ahmed, Elvish, Keady, Williamson and Reilly2019; Swarbrick et al., Reference Swarbrick and Keady2019). Consequently, healthcare materials are tailored to focus on the patient; Grandad Forgot My Name was framed around people living with dementia, with the story structure following key aspects of dementia and dementia care.
The child-focused pathway began with soft themes (forgetfulness, confusion, mixing words), progressing to difficult circumstances (aggression, police involvement and missing persons, different personalities), and concluding on how to help. Options for interactivity and user input were embedded throughout to make the stories more personal and framed around the reader as the main character.
The three adult pathways followed matching structures but with the narratives adjusted to reflect the reader choice: ‘I have dementia’, ‘my loved one has dementia’ and ‘I’m interested in dementia’ (Figure 2). This achieved a flowing narrative, for example, someone with dementia does not require screening tests and pronouns reflected the reader (you versus they). Images and pronouns were also designed by the authors to be unfixed throughout so that all readers and identities could relate to the content.
Start page for the four pathways. Narrative, pronouns, and language level were adjusted for each option. Colour themes and image design style were maintained throughout for consistency.
Surveys
Viewers were offered space to provide feedback via a short survey at the end of each pathway for ongoing content maintenance, to evaluate the effectiveness of this medium for healthcare, and to identity whether future projects in other health conditions would be of value. Questions investigated ease of access, value, and educational impact (a copy of the survey is provided in the supplementary information). Questions used a mixture of qualitative free response space to provide descriptive feedback and commentary, and a quantitative 5-point Likert scale with numerical scores and wording added to make the scale easily understandable for readers. The Likert scores provided quantitative data for descriptive statistical analysis in R (R Core Team, 2025). All respondents were valid; adults could provide responses independently whereas those below 18 were prompted to complete the survey with an appropriate adult. Consent was obtained from viewers before any questions were shown. Ethical approval for this project was obtained prior to release of the story materials, and no identifying or sensitive data were collected.
Findings and reflections
This project aimed to design and develop resources to improve communication about dementia between family members and care givers, particularly younger members, by creating free, accessible interactive, and educational storytelling media. However, survey uptake was too low for robust statistical analysis; of the 611 people who accessed to the story over a six-month period, only 13 provided survey responses. Therefore, this research reflects on the project development considerations discovered following the production and release of Grandad Forgot My Name, with insight from the initial descriptive feedback or commentary provided by respondents. More descriptive results and survey findings are provided in the supplementary file. Four key themes emerged for discussion, including: design, audience reach, logistics, and structure.
Design
Design is a key issue when developing online public engagement resources (Hackenbroich and Williams, Reference Hackenbroich, Williams, Alberti and Mountain2022; Hackenbroich et al., Reference Hackenbroich, Taylor and Williams2023). Health education resources must require minimal training and management to allow wide and ongoing deployment (Zachos et al., Reference Zachos, Maiden, Pitts, Jones, Turner, Rose, Pudney and Macmanus2013). Furthermore, gamified resources with complex controls detract from the experience of many users; Lam et al. (Reference Lam, Gutierrez, Goad, Odessky and Bock2019) showed that a significant portion of participants had difficulties in navigating and controlling characters in the game, breaking their engagement with learning. The design choices of Grandad Forgot My Name were reflected by readers commenting on appreciating the colourfulness and interactivity, and all survey responses being positive on design, control and visual appeal (see supplmentary information). In particular, one respondent commented ‘Very well put together. I did laugh and cry. Touching.’ in their free response survey answer, supporting the story-driven separation in help materials. Simplicity is essential when designing digital content; difficult menus and fonts may cause apprehension when accepting digital tools in older or unfamiliar populations (Yamagata et al., Reference Yamagata, Coppola, Kowtko and Joyce2013; Øksnebjerg et al., Reference Øksnebjerg, Woods, Ruth, Lauridsen, Kristiansen, Holst and Waldemar2020; Chelberg et al., Reference Chelberg, Neuhaus, Mothershaw, Mahoney and Caffery2022). This was achieved in Grandad Forgot My Name by focusing on text stories and standard hyperlinks rather than implementing more complicated interactions and customized user menus, reflected in all the viewer responses being positive towards design and ease-of-use.
Effective gamification and narrative media for education must consider the level of personalization and standardization available to the reader. Cheng and Ebrahimi (Reference Cheng and Ebrahimi2023) discussed how personalized mental health apps are greatly preferred by participants, leading to improved engagement and sustained activity but can risk losing focus or placing significant development requirements on the creators. In Grandad Forgot My Name, the character images were designed to be featureless, genderless and changing on each page, rather than focusing on one identity and watching one person get older and frailer as the story progresses. Including a wide range of identities helped to avoid the ageism trope frequently encountered in dementia help resources (Caldwell et al., Reference Caldwell, Falcus and Sako2021). The interactive elements of Grandad Forgot My Name allowed readers to input their personality, interests, and role regardless of age or identity, thus facilitating more inclusive reading (Caldwell et al., Reference Caldwell, Falcus and Sako2021). Interactivity was also framed around dementia care to better personalize the stories. For example, people living with late-stage dementia can become stimulated when listening to their favourite music or discussing hobbies (Muñoz et al., Reference Muñoz, Favilla, Pedell, Murphy, Beh and Petrovich2021, Yamagata et al., Reference Yamagata, Coppola, Kowtko and Joyce2013). Consequently, Grandad Forgot My Name provided opportunity to ask and capture favourite music, memories and activities in both child route and adult advance care plan sections whilst cognition was still functioning well. Listening and discussing the story prompts with the person living with dementia in the central role avoided reinforcing the sense of disempowerment and ‘not feeling human’ often felt as dementia progresses (Mackinlay, Reference Mackinlay2003).
Audience reach
This project aimed to reach a significant audience representative of the population and families with a dementia diagnosis. However, healthcare stakeholders and governmental bodies were engaged with but unable to adopt and share the materials unless they were the creators. Individually sharing the materials through individual residential homes, focus groups and support networks achieved some good reach but this approach cannot achieve national interactions without stakeholder support. Consequently, a substantially larger group of visitors and their responses were desired for Grandad Forgot My Name to provide more representative views but this was not achieved, limiting the evaluation capabilities of this project. Resistance towards new resources and technologies has been previously reported; for example, Zachos et al. (Reference Zachos, Maiden, Pitts, Jones, Turner, Rose, Pudney and Macmanus2013) saw limited uptake of their Carer app due to a lack of organizational and managerial support or engagement in the trialled residential care homes. In spite of this, a generational population was found to have engaged with the stories and therefore suggests this was a suitable approach for interacting with a generational population. Following this pilot project and proof-of-concept, future iterations will integrate health and social care organizations closely from the onset.
Logistics
An essential target throughout this project and future applications was to achieve low costs for initial startup and ongoing maintenance (Brown et al., Reference Brown, Ruggiano, Li, Clarke, Kay and Hristidis2019). Grandad Forgot My Name cost several thousand GBP to create, including equipment, advertisement and paid student placements. Stories were freely hosted on Itch.io, making them free to share indefinitely and with instant access rather than requiring private hosting. Whilst building a bespoke webpage and app for the stories would have allowed easier and more professional sharing, and potentially more in-depth content, these would have cost significantly more for the pilot project. As such, almost all apps reviewed by Chelberg et al. (Reference Chelberg, Neuhaus, Mothershaw, Mahoney and Caffery2022) placed costs on the viewer, whether through up-front cost, in-app purchases or significant monthly subscriptions ranging from $1.49/month to $14.99/month. Including focus groups, training resource development and hands-on contact will greatly benefit those included but cost far more than the budget of Grandad Forgot My Name allowed (for example, the Spirited Project at $140,000; Jackson and Olorunnisola, 2021) and will instead be explored in future initiatives. Such projects should also be accessible irrespective of hardware (Brown et al., Reference Brown, Ruggiano, Li, Clarke, Kay and Hristidis2019). For example, Grandad Forgot My Name was browser-based and accessible on Android, iOS, Windows, PC, and tablets, ensuring legacy in future initiatives.
Deploying materials via smartphones is appropriate considering the widespread adoption of smartphones and their tools across all ages (Ye et al., Reference Ye, How, Chu and Mihailidis2021; Chelberg et al., Reference Chelberg, Neuhaus, Mothershaw, Mahoney and Caffery2022). In particular, Ye et al. (Reference Ye, How, Chu and Mihailidis2021) discuss the increasing implementation of smartphones for healthcare monitoring in addition to typical mobile communications and internet usage. Despite the advantages and successes observed across digital health interventions, there is an ongoing challenge with patient non-adoption or discontinued engagement (Øksnebjerg et al., Reference Øksnebjerg, Woods, Ruth, Lauridsen, Kristiansen, Holst and Waldemar2020). Ongoing monitoring has clear advantages for health and social care whereas initiatives that seek to provide initial or single-time support such as Grandad Forgot My Name do not risk discontinued interaction.
Structure and content
Discussions during creation and deployment of Grandad Forgot My Name ensured that the resources were adjusted to provide the information needed by active viewers. However, the majority of the stories were too introductory for those already with a diagnosis and would benefit from either being provided much sooner following diagnosis, or including information on later stages of dementia; some responses reflected this by assigning an intermediate score for helpfulness of adult pathways As such, feedback from participants of Grandad Forgot My Name included their appreciation for informing the reader on essential information between initial diagnosis and first appointment, where people living with dementia are often currently left waiting and uninformed on dementia. Descriptive survey feedback from one respondent included ‘Great intro materials, very helpful for us with a new diagnosis in the family’, whereas another commented ‘Helpful introduction but for existing diagnosis, quite a bit was already known. The advance care plan bit was very helpful and not discussed with me before’. The advance care plan section involves discussing and co-designing the preferences, needs, desires and wishes for carers to consider as dementia advances (Neves et al., Reference Neves, Macdonald, Mclellan, Poole, Harrison-Dening, Tucker, Bamford and Robinson2021). Producing materials where the reader can direct the narrative or information elements towards their topics of choice were therefore effective and should be expanded on in future, perhaps by creating pathways that focus on early, middle, and late stages of dementia. Furthermore, future projects should consider a wide timeline in subject matter to ensure the needs of the full audience are incorporated, rather than focusing on initial diagnosis or information. There is a significant number of apps that deliver medical screening tools, with some incorporating AI and machine learning with good success in rapid and accurate diagnoses (Thabtah et al., Reference Thabtah, Peebles, Retzler and Hathurusingha2020).
Where Grandad Forgot My Name was a digital aid and therefore had to contain the full information for readers to progress through (separating stories and pathways helped to avoid overloading), Davies et al. (Reference Davies, Sampson, West, Desouza, Manthorpe, Moore, Walters, Dening, Ward and Rait2021) employed a physical decision aid tool for late-stage dementia, including interactive decision-making, FAQs, and illustrative quotes. This approach could be tailored or streamlined much quicker for those requiring specific help needs and advanced information, and therefore a combination of virtual and physical strategies may be the optimal approach towards delivering additional support of dementia but would require substantially more resources from health and social care providers to implement.
The content of digital resources for dementia support must be of sufficient quality, relevance, and avoid commercialism to be recommendable (Chelberg et al., Reference Chelberg, Neuhaus, Mothershaw, Mahoney and Caffery2022). The structure of Grandad Forgot My Name alluded to the five themes of dementia concerns recognized by Mackinlay (Reference Mackinlay2003), including loneliness, fears, faith, difficult times, and disempowerment. The interactive child pathway was particularly well-placed for meeting concerns relating to dementia, by allowing interactivity between child, patient, and resource, fostering a generational discussion and understanding (Muñoz et al., Reference Muñoz, Favilla, Pedell, Murphy, Beh and Petrovich2021); 33% of Grandad Forgot My Name viewers read the child pathway stories with their grandparent. This effectively encouraged the listening aspect that Mackinlay (Reference Mackinlay2003) discussed as critical to improving pastoral care of dementia, allowing the grandparent to provide their answers directly to children for inputting into the stories. Future applications of interactive media for healthcare may therefore consider the generational familial interactions in their design for optimal uptake and engagement. Subsequent projects may also incorporate a stronger narrative element to further engage with storytelling aspects achievable in Twine and therefore establish a clear identity amongst standalone help materials.
Conclusion
Grandad Forgot My Name provides an example of the necessity and value of incorporating the target audience when providing care resources for health and social care, involving carers, patients, and researchers together into one project (Swarbrick et al., Reference Swarbrick and Keady2019). Interactive storytelling provided a new, low-cost, and scalable approach towards providing support to those with dementia and their families. Design, structure, and interactivity were key considerations when developing the materials for maximum engagement and learning capacity. Grandad Forgot My Name successfully demonstrated key design and logistical considerations for an effective educational resource suitable for national operation, but encountered issues with stakeholder adoptability and resource sharing that need resolution for future outputs. Grandad Forgot My Name was particularly helpful for the early stage of information gathering, with most value obtained between initial diagnosis to first appointment where patients are largely uninformed on the condition. The storytelling approach will therefore be expanded on other conditions identified by survey respondents, including: ADHD, anxiety, arthritis, cancer, depression, diabetes, hearing loss and hearing aids, heart disease, and obesity.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1463423626100838
Acknowledgements
We would like to thank all those that engaged with the storytelling media and offered their feedback, it was invaluable for evaluating and improving the resource.
Funding statement
This work was supported by the Teesside University 2023 Seed Corn Funding. The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Competing interests
None.
Ethical standards
This study was approved by the [redacted for author anonymity] (approval no. 13119) on February 16th, 2023. Respondents gave written consent for review and signature before starting survey responses.
Open access
