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Evidence-based educational tool for caregivers of loved ones with dementia (12/21 description, refinement, attachments)

An online e-learning and scenario-based serious game to empower and educate caregivers of loved ones with dementia.

Photo of Connor Buffel
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Who is your idea designed for and how does it better support family caregivers as they care for a loved one with dementia?

The idea is designed for caregivers of loved ones with dementia and it provides support to these individuals by both educating and empowering them. Education is provided through an e-learning component and cognitive feedback offered during the scenario-based serious game. Additionally, the scenario-based tool offers a safe, virtual environment where caregivers can test coping strategies and experience the implications of their actions in realistic and recognizable scenarios.

Company Background: a passion for people and mission to improve lives

MindBytes is not just a company, it is an innovative game changer with a heart for people. At MindBytes we create evidence-based medical games that can make a true difference. With the quote “Tell me and I forget, teach me and I may remember, involve me and I learn” of Benjamin Franklin in mind, our medical games do not solely convey factual knowledge, but are centered around the psychosocial impact of a disease on all stakeholders (patients, caregivers, health care providers), including society. The ultimate aim of our games is to change behavior and improve the outcomes of patients and caregivers. We achieve this goal by working our ‘MindBytes magic’: a combination of the passion to help people, a hunger for both scientific and real-life foundations, as well as a thirst for creativity and innovation. This magic is reflected in our SERES technology: (1) we review the scientific literature, (2) we validate the daily-life relevance with professional and hands-on experts, (3) we translate the science in scenarios and visuals, and (4) we connect our foundations with our endgame during and after the development to steer, to monitor and to keep improving.

Currently, clinical trials are ongoing to endorse the true value of our magic and medical games. An anthology of the first user feedback: “It’s nice to learn how my own decisions aren’t always best for myself or for my loved-one with mental illness.”; “This is a great initiative, very clear and nicely made.”; “Super interesting and enjoyable!”

MIB Coping Dementia: using technology to empower & educate informal caregivers of loved ones with dementia

Summary:

MindBytes is developing an interactive, evidence-based online educational tool called MIB Coping Dementia. This tool will consist of a scenario-based serious game, e-learning, training materials, and communication materials. MindBytes has implemented a multi-stakeholder approach to leverage the expertise of clinicians, academics, and end users to co-create the solution. The objective of this tool is to reduce burden and enhance coping skills of informal caregivers of loved ones with dementia. Currently an offline version of the serious game is available and the complete tool, which will be available in an online environment will be finalized in Q3 2018.

Background: caregivers experience substantial burden

While suddenly adding the role of caregiver to your role as partner, child, sibling, which already implies quite the burden, you also see this family member becoming less and less the person you know. It is difficult and support is required to empower caregivers to embrace their new role and changing relationship with their loved one.

Idea: interactive educational tool to test coping strategies & reduce burden

MindBytes has created a serious game for caregivers of a loved one with dementia. This is an evidence-based educational game developed by MindBytes and the University of Leuven, in collaboration with the Flemish Alzheimer Society to address the high burden of care experienced by family caregivers of loved ones with dementia and help (indirectly) improve patient outcomes. The game is typically set-up to be played in a group setting; creating a safe environment with real-life situations helps the caregiver to objectify their own caregiver approach end provide insight, and by talking in group, caregivers can learn from each other's approach. Therefore, the current version is available only offline. However, we have also developed modules for the game that can be played on one's own as they are personalized to the specific end user's situation (e.g. mobility, food preparation, hallucinations, etc.). These modules will be integrated into a fully accessible online version that is expected to be finalized by Q3 2018. The online version would allow caregivers to play at home and would also allow MindBytes to collect data from users, which can be used to enhance the game and provide insights into cognitive and psychosocial profiles of informal caregivers.

The game guides the caregiver through realistic scenarios (based on case studies and situations commonly experienced by family caregivers) and asks them to make a decision for each scenario. Cognitive feedback associated with best practices is presented after each scenaro. The game is fully based on literature and input from experts (e.g. psychologists, geriatricians, nurses, and informal caregivers) and focuses on allowing the caregiver to experience the impact of certain trade-offs - both short and long-term - and to gain insight into how behaviours, decisions and interactions directly and indirectly impact their own burden as a caregiver and the outcomes for their loved one with dementia.

The current version of the serious game is played in a group setting facilitated by a moderator and consists of four modules each covering two topics. These topics are: (1) functional independence of person with dementia, (2) social functioning and support from others, (3) dealing with stress, (4) family relationships, (5) motivation towards healthcare, (6) self-efficacy (7) respect towards person with dementia, and (8) caregiver’s health.

Idea: e-learning to educate & empower informal caregivers

Aligned with the IMB model of behaviour change, we are also developing a complementary e-learning that will be integrated into MIB Coping Dementia. This e-learning will simultaneously prepare users for the scenario-based serious game and provide more clear information to informal caregivers (e.g. knowledge transfer). The content for the e-learning will be generated in 2018 based on a needs assessment carried out with key dementia stakeholders in Belgium.

Collaborators: Leveraging expertise from academia, clinicians, and end users

In the past years the game has been tested with informal caregivers in 4 seperate focus groups. We've been working together with the Flemish Alzheimer's Association to set up these testing sessions and to validate the game content-wise and we have also received support from the Flemish Dementia Expert Centre. We are also working with the University of Saskatchewan in Canada to integrate an artificial intelligence engine into our existing evidence-based serious game for caregivers to enhance the realism and personalize the content to the individual caregiver (e.g. match scenarios with needs of the informal caregiver).

Psychological Theory: changing coping behaviours

The IMB model of behaviour change provides the basis for the content integrated in the e-learning and scenario-based serious game. This model indicates that information, motivation, and behavioural skills are required for an individual to change their behaviour. Therefore, our interactive educational tool provides:

i. information through an e-learning component and cognitive feedback built directly into the serious game.

ii. Motivation through engaging and empowering caregivers to understand coping strategies and their use in challenging, realistic, scenarios. Also addressed by increasing self-efficacy in a safe, virtual environment.

iii. Behavioural skills by simulating the results of implementing different coping strategies for a multitide of realistic scenarios. These are ehnahced through group discussion with peers.

The theory behind our tools' mechanism is a derivative of cognitive behavioural therapy (CBT), in which the ABC (antecedent-behaviour-consequences) approach is applied. Using this theory, we have integrated realistic scenarios (antecedents), defined coping strategies associated with decisions in each scenario (behaviours), and traced the impact of decisions on relevant psychosocial and disease-related factors that are provided to the end user after each decision (consequences). 

Pedagogical/andragogical theory: experiential learning

MIB Coping Dementia includes the SERES Dementia scenario-based serious game, which allows caregivers to practice coping skills and discuss strategies with peers using realistic, validated scenarios that are delivered in a safe, virtual environment. In contrast to psychoeducation, which often focuses on knowledge transfer (information), serious games offer an environment in which theoretical knowledge can be applied and learning occurs through trial and error (Kolb, 2014). The type of learning leveraged in MIB Coping Dementia is known as experiential, or experimental, learning and has been shown to be generally more effective than passive learning, which is typical in psychoeducation (Kolb, 2014; Vracem et al., 2014). Moreover, experiential learning offered by serious games has been demonstrated to be effective in various healthcare settings such as: clinician training, treatment adherence, lifestyle change, and patient education (Bul et al., 2016; Cain & Piascik, 2015; De Smet et al., 2014; Kato, Cole, Bradlyn, & Pollock, 2008). This is particularly important in the context of dementia caregiving when one considers that people revert to emotional bases for decision-making under stressful situations, which are common for family caregivers (Gutnik, Hakimzada, Yoskowitz, & Patel, 2006). Aligned with this evidence, it’s clear that caregivers could benefit from the opportunity to practice coping skills in realistic scenarios, which are not explicitly addressed by existing psychoeducation programs.

Results: focus groups & stakeholder interactions support intervention

Our evidence-based serious game for caregivers of loved ones with dementia has been evaluted in 4 focus groups of caregivers and through a Delphi evaluation by several clinicians. This tool has been well-received by the target audience who has provided feedback on content, visuals, language, etc. that has been used to refine and optimize the serious game. Moreover, a stakeholder meeting of key participants in the dementia community has been convened in Flanders, Belgium and the stakeholders support the need for the tool.

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

This idea has already been evaluated through several focus groups of caregivers of individuals with dementia in Flanders, Belgium and was also evaluated by several clinicians as part of a masters thesis at the University of Leuven in Belgium. These initial focus groups provided excellent input from the target audience into the needs and expectations for such a tool. Additional focus groups could also be carried out in other jurisdictions where the company operates, such as North America.

What skills, input, or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

The most interesting input from the OpenIDEO community would be related to how can we bring this evidence-based educational tool from demo stage to the market. Due to the complexity in healthcare and the robust number of stakeholders involved it's not clear as to the best route that we can take to get this tool into the hands of end users. That being said, we have finalized a plan for the European market in collaboration with dementia stakeholders in Flanders, Belgium.

How long has your idea existed?

  • Over 1 year

This idea emerged from

  • A student collaboration

Tell us about your work experience:

My background is healthcare - I spent 3 years working in clinical trial management of large-scale clincial trials before shifting gears to my current position. In my current role of Scientific Integration Expert I ensure that scientific evidence is translated into our educational tools.

How would you describe this idea while in an elevator with someone?

MindBytes is developing an evidence-based educational tool that consists of a scenario-based serious game and an e-learning to reduce burden of informal caregivers. All content has been derived from scientific literature and validated with experts. The serious game has been tested in four focus groups of informal caregivers. Dementia stakeholders in Belgium have confirmed the need of such a tool.

How does your idea demonstrate our Criteria of Accessibility?

We expect that MIB Coping Dementia will be provided to end users at no, or minimal, cost. Our intention is to license the tool to regional dementia patient and caregiver networks focusing on established family groups. Two elements that will facilitate this is the low barrier for moderators and the forthcoming online accessibility. This will ensure that MIB Coping Dementia is accessible to all those that wish to attend an in-person session or use it independently at home.

How does your idea demonstrate or plan to demonstrate scalability?

We have a clear plan for scalability in Flanders, which will serve as proof-of-concept for other regions. As dementia advocacy and support groups operate at regional levels, we will focus on marketing MIB Coping Dementia to regional groups such as Alzheimer's Society, Alzheimer's Association, etc. We have well-established connections with such groups outside of Belgium and plan to move into new European countries each year starting in 2019. We will initiate a simultaneous plan for North America.

How do you plan to measure the impact of your idea?

The impact of our idea can be measured at a personal level by integrating questionnaires into the tool and analyzing outcomes over time. Alternatively it could be measured at the regional level by evaluating pooled user data such as: number of users, times accessed, outcomes, etc.

What are your immediate next steps after the Challenge?

Our immediate next steps are to finalize the e-learning and integrate the package into an online environment. This will be carried out in close collaboration with Flemish dementia experts. We have submitted a grant application in Belgium and expect to receive an update in Q1 2018. The intention is to launch the finalized version in September 2018 in collaboration with the dementia stakeholders who are already onboard (clinicians, academics, government, advocacy, healthcare funds, etc.).
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Attachments (4)

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Scenario-based serious game: Module 4

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Scenario-based serious game: Module 3

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Scenario-based serious game: Module 2

Slide1.jpg

Scenario-based serious game: Module 1

5 comments

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Photo of Marley Brown
Team

Hi Buffel,

I think this is an amazing idea. Hope things go well in the refinement phase.

Photo of Joanna Spoth
Team

Hi Buffel - welcome to Refinement! We're eager to see updates to your idea and learn more. Don't forget there are a few additional questions now that you're in the Refinement Phase. You can see them by clicking "Edit Contribution" and scrolling to the questions that don't yet have answers from you. We also encourage you to add an image and start thinking about a small experiment you could test in the next few weeks. Please reach out with questions!

Photo of Kate Rushton
Team

Hi Buffel,

It is great to have you in the challenge.

Is this the link to your game - http://mindbytes.be/project/seres-dementia/?

How long has it been launched? What sort of feedback have you received on the game so far?

Photo of Connor Buffel
Team

Kate Rushton Yes, that's the link to the description of the game on our company website. With respect to your question about launch, it is only currently available in a research setting (e.g. is not available to caregivers in the community). We are working with stakeholders in Flanders, Belgium to facilitate its release and uptake in the dementia caregiving community there. We have also engaged with several stakeholders in Alberta, Canada to identify a pathway forward for validation and roll-out in Western Canada. As briefly described we have held several focus groups with caregivers and Delphi feedback rounds with Clinicians. Generally the feedback has been positive and has informed the following elements: language, visuals, scenarios, family (character) composition, and user feedback.

Photo of louise
Team

Do you have plans to have an open beta available for people outside of Belgium and Canada?