Frequently Asked Questions
Here you find a selection of frequently asked questions that may help you, when you plan to implement the INTenSE Training.
The INTenSE homepage provides an overview of the transnational Erasmus+ project INTenSE, in particular the scientific objectives and selected results. The INTenSE platform is a result of the INTenSE project and helps educators in dementia care to develop dementia self-experience training and incorporate self-experience scenarios into their existing training. The platform contains information on self-experience, a set of self-experience scenarios and tools developed for practical implementation and user stories that describe where and how these scenarios have been used.
The immersive nature of self-experience training particularly distinguishes this approach from other methods. This type of training makes the experience of dementia symptoms more immediate, which may be both new and unexpected for the trainees. As a result, individual reactions to these experiences can be very different from those of a traditional learning method. It is particularly important for the trainer (facilitator) to support the trainees during each scenario, be alert to any strong reactions to what they are experiencing and to incorporate enough time into the training schedule for trainees to reflect on their experiences. This can be through small or large group discussion, or a combination of the two.
The INTenSE Dementia Simulation Toolkit (DST) offers a wide range of tools, symptoms to be presented and scenarios to be experienced. The careful selection of self-experience tools and scenarios is necessary due to the different (professional and personal) previous experiences of the trainees. Over- or under-challenging trainees should also be avoided.
We recommend adapting the content to each target group of trainees. For example, you may decide to use simple single-symptom scenarios for a group of trainees with little experience of dementia, but use the more complex multi-symptom scenarios for trainees who are experienced working with people with dementia. Other elements to consider when selecting the materials you want to use are: your trainees (e.g. professional carers, students, family carers); what is suitable for this group; what is relevant to this setting (e.g. nursing home, hospital, person’s own home); how much time is available for the training; and how much time can be dedicated to self-experience scenarios).
We would be happy if you would like to share your experience with the INTenSE Dementia Simulation Toolkit. You can send your experience in writing, as an audio file or as a short film to info@intenseprojectdementia.eu. You can also send your experiences to us by using the Contact Us form. We are particularly interested in your experiences with the training and in advice that you would like to share that would help other trainers (facilitators) to implement self-experience training successfully. In addition, your experiences can help to further improve the INTenSE Toolkit. Take a look at the User Stories section of the INTenSE Platform to see how others have shared their experiences.
The toolkit is freely available for anyone to use. We recommend that the trainer (facilitator) has experience of person-centred approaches to dementia care. The reason for this is that they will need to support their trainees to discuss and reflect on their experiences as they go through the self-experience scenarios. Trainers (facilitators) will need to be confident that they can validate the experiences of each individual. Some experience of providing traditional dementia training can be beneficial but it is not essential. A full set of supporting materials are provided with each scenario including background context and reading materials, guidelines for preparing and implementing each scenario, suggestions for reflective discussions and slides to support the key learning points associated with each scenario.
You do not need to have any special training to use the INTenSE Toolkit. A full set of guidelines, scenarios and related instructions are provided on the Platform. However, it would be beneficial if you have some experience with dementia so that you can support the trainees to discuss and reflect on their experiences. If someone has a strong reaction to their experience, it is also important that you are able to support them to process this reaction. Regardless of your level of experience with dementia, we advise trainers (facilitators) to practise each of the scenarios themselves before using them in the classroom.
The INTenSE Dementia Simulation Toolkit (DST) has been built with a focus on training health and social care professionals; that is, professional caregivers. It is certainly possible to incorporate the tools and scenarios into training and education for other groups, as long as you are aware of the risks and benefits associated with doing this. For example, the scenarios can be incorporated into education of students in health and social care related courses (e.g. psychologists, nurses, occupational therapists, physiotherapists, social workers…etc.) without a significant degree of risk. The benefit is that self-experience approaches provide more realistic ways for students to understand what dementia is all about. It is important, however, to consider that some students may have a family member or friend with a diagnosis of dementia and the scenarios may give them insight, for the first time, into how that person experiences daily living. This is likely to lead to an emotional response and as the trainer (facilitator) you should know how you will deal with this. Similarly, the scenarios can be used with family (informal) carers, but again there is a risk that experiencing what their loved one experiences could lead to strong emotional reactions.
To recap, the INTenSE Toolkit has been developed with a focus on training professional carers but it is possible to use the Toolkit with students and with families of those diagnosed with dementia as long as potential risks and ethical issues are considered before use.
The self-experience tools and scenarios present experiences of some of the most common symptoms experienced by people with dementia. It is very important to remember that each person with dementia’s experience is individual and these tools will not provide you with 100% of the experience of any one person living with the condition. Different types and stages of dementia also have different clusters of symptoms, so an individual person living with one type of dementia is unlikely to experience all of the symptoms covered by the INTenSE Toolkit.
It is also very important to realise that each trainee is also a person with a personal life outside their work and/or study. A trainee may have a close relationship with someone living with dementia or they may be aware of dementia through friends or extended family. Taking part in self-experience activities is likely to make the experience of dementia more real for these trainees and they may find this emotional and difficult to process. The closer you get to the person with dementia (e.g. family carer training), the higher the risk for potential distress. As a trainer, it is essential that you know how to support trainees with these experiences. It is also why we strongly recommend including time for discussion and reflection after each scenario.
An Ethics Scenario has been included in the INTenSE Dementia Simulation Toolkit to help explore these and other potential ethical issues that should be considered if using a self-experience approach to training.
The INTenSE Dementia Simulation Toolkit (DST) is a collection of tools, scenarios and supporting materials that enable you to create a new training course based on simulating the experience of having dementia or pick and choose specific tools and scenarios and incorporate these into your existing training courses. All of the content in the Toolkit can be accessed in different ways. You can decide to look at tools and scenarios that are relevant to a particular symptom of dementia (e.g. vision loss, perceptual difficulty, memory difficulty). You can also access the materials relevant to a particular tool (e.g. film interventions, vision simulation, virtual reality). A full set of materials are provided in the Resources section of the Platform, along with an eBooklet that presents different approaches to simulating self-experience. There is also a Facilitation Guide that gives an overview of the background to self-experience, how to build self-experience into your training and suggested lesson plans.
You can decide to download all of the materials in the Toolkit or just those that you want to look through or use at a point in time (e.g. the materials relating to a specific scenario or tool). All of the materials are available for you to use. We provide slides that can be incorporated into a training pack for each scenario. All we ask is that you acknowledge the INTenSE Toolkit when you use any of our materials.
Citation: (INTenSE Dementia Simulation Toolkit, year materials were downloaded)
Reference: INTenSE Project (Year, Month). INTenSE Dementia Simulation Toolkit.
https://www.experiencedementia.eu/
(year, month) refer to the year and month that the materials were downloaded.
All of the information, training materials and supporting content that are available on the INTenSE Platform are free of charge. Where training materials have been developed by another group, we highlight this and we encourage you to include a citation to the authors. We also provide full reference details. There is a cost associated with some of the tools used in the scenarios (e.g. specialised eye glasses, virtual reality viewers). We do not provide these tools on this website nor are we associated with any of the producers or retailers of these tools. We have included suggestions for where you can find low cost versions of these tools. We have also included hacks if there is an easy way to ‘create’ the tool yourself.
As much as we can, we try to use tools that are widely available from different suppliers. For example, there are a range of low cost cardboard and plastic virtual reality viewers that can be used with mobile phones and these are all available from Amazon or similar retailers. If there is a specialised supplier of any tool, we highlight this. If we have found a ‘hack’ that works as well, we have included this in the relevant scenarios. Please get in touch using our ‘Contact Us’ form if you have specific difficulties getting hold of any of these items. Tools are being developed all the time and we would love to hear from you if you have found other tools or suppliers that would work well with our scenarios or with self-experience training more generally.
Each of the partners in the INTenSE project have used these tools in training sessions as the INTenSE Dementia Stimulation Toolkit was being developed. Training was first delivered to researchers experienced in the Dementia field. When the Platform and Toolkit were developed, 2 to 3 health and social care professionals from each of the partner countries were trained to use the tools and scenarios. These trainees became ambassadors for the INTenSE approach and each took the training back to their own practice. Essentially, we ‘trained the trainers’ and the ambassadors have started to roll out self-experience training. Some have created short training courses that focus on self-experience, while others have incorporated some self-experience scenarios into their existing training courses. The User Stories section of the INTenSE Platform provides examples of how different people have used the materials to date. We encourage you to send us examples of your own experiences as you use the INTenSE Toolkit.
