All the main outcomes of the project
Intellectual Output 1
Users Needs Analysis
In the context of the Dem@entoring project, this report on the users’ needs provides a profile of informal and formal caregivers of persons with dementia in five EU member states (Denmark, Greece, Italy, Poland, and Sweden) in order to contribute in the wider European endeavor to provide caregivers with the necessary support. It also explores how e-training programmes can help formal and informal carers of persons with dementia increase the quality of the time spent with the persons they care for, as well as their own wellbeing while gathering carers’ training needs and preferences.
Although the population is ageing and persons with dementia are increasing, there is a lack of networking and capacity building opportunities for those who daily care for persons with dementia. As a result, the care given to the person with dementia is inefficient and the caregivers often neglect their own needs, leading them to emotional and physical exhaustion. Therefore, it is very important to properly train the carers of persons with dementia. In particular, e-learning modules can allow them to participate in training programmes without the need to leave their homes or working places.
The report portrays informal carers as women aged 45+ who are still working and devote more than 4 hours per day to the person they are caring for. According to the analysis, informal carers would like to be trained on practical issues in care management, including existing structures for caregivers’ support and information on social management, legal and financial aspects. Being trained on ways to relieve them is also crucial for them.
Concerning formal carers, they are also mainly women, but younger (under 45). The most important overall topics to be covered in an online training program for them concern psychosocial interventions and practical issues for care management, including information on the existing structures for caregivers’ support and good practice in the design of homes and living spaces for persons with dementia. Tips to relieve caregivers are also very much needed for them.
For both carers, online training needs to be short and flexible to fit into very busy days. On average both formal and informal carers could devote a few hours per week to such training by using their laptops, tablets, smartphones and PCs. The e-mentor training and intervention is expected to have a positive effect on sense of competence, the perceived burden of care and health. Other positive aspects include receiving knowledge about dementia, gaining new insights into their own situation and having their problems acknowledged. The possible risk of the online training could be the lack of face-to-face exchanges among caregivers, but this risk can be overcome by foreseeing online networking opportunities among trainees.
Intellectual Output 2
Training Course on e-mentor - Curricula
Worldwide, around 50 million people have dementia, and every third second there is someone diagnosed with the disease. The number of people diagnosed with dementia are projected to increase significantly in the decades to come and the number of countries recognizing the need for making dementia a priority continues to grow. By incorporating ICT, the DEM@ENTORING project will provide an opportunity for people with a dementia disease, as well as their families and health professionals, to receive much of the information they need in order to improve their quality of life.
The main idea of the DEM@ENTORING program, however, is to provide a training program in which families and professionals can become e-mentors, and later share their knowledge and skills by utilizing a fun and interactive online platform. This includes a dementia support group, through which the e-mentors can be reached in order to discuss relevant topics and form a network of knowledge exchange. The DEM@ENTORING training program is targeted towards individuals with an education comparable to the International Standard Classification of Education (ISCED) levels of 1+2+3.
The level of education and individual skills will be used in order to create an online profile for each e-mentor. The participants will then be trained through Open Education Resources (OER), in order for them to acquire the knowledge and skills necessary to provide e-mentoring to other individuals, either people living with dementia, their families or those in professional caring positions. To reach the objectives of the e-mentoring program, i.e. to transfer valuable skills to new or existing caregivers, to design OER material, to utilise ‘personal mapping’ for optimal matching with the mentors and to test knowledge and skills using self-evaluating tools, the program has been divided into three different 1-3.
Course I: Knowledge and understanding of dementia diseases, will focus on the knowledge and understanding of dementia, and is divided into four different modules, each covering a particular topic (Introduction to Dementia and Cognitive Disorders; Behavioural and Psychological Symptoms of Dementia; Psychosocial interventions; and Risk and Medication Management). The modules are further divided into smaller sessions, ranging from two to seven in each module. The sessions will not take longer than 15 minutes to complete, and all modules will be followed by a quiz.
The second course, Course II: E-mentoring knowledge, is dedicated to the knowledge surrounding strategies for teaching and facilitating learning among adults. The content of this course is divided into five parts (Adult learning strategies and models; Strategies for facilitating adult learning; Strategies for online teaching, learning and feedback; Legal and behavioral aspects of online learning; and Debriefing and supervision), with each part comprising two to three smaller sessions.
Course III: E-mentoring Skills focuses more on the application of strategies and communication between mentor and mentee, and the content is divided into three parts (Communication with mentees; Strategies to facilitate learning; and Self-reflection on communication and facilitation skills) with each part comprising one to four smaller sessions. Courses I and II builds on the information acquired through interviews with people with a dementia disease, their families and health professionals, while course III to a larger extent relies on desktop research.
The mode of teaching in courses II and III are also greatly influenced by short seminars held with different user groups, groups that consisted of people with a dementia disease, their families and health professionals. The different courses will all be separately evaluated using online surveys, targeting the relevance of the content and the learning outcome. An e-mentoring certificate is awarded to each participant upon successful completion of the Dem@entoring training program.
Intellectual Output 3
Design & Development of DEM@ENTORING platform and training material
The core outcome of Intellectual Output 3 (IO3) was to develop the whole DEM@ENTORING ecosystem (a holistic platform combining the educational part as well as the Mentor/Mentee Collaboration environment), taking into account the feedback and outcomes from IO1 and IO2, the Mentoring Lifecycle Model introduced in IO5 and finally the technological competence in the form of tools and components brought in by INNOSYSTEMS.
The DEM@ENTORING online ecosystem has harmoniously combined and integrated all the proposed technological advances with the outcomes and results of the project, to produce an exploitable solution, which is considered as one of the core deliverables of the project. An online system with train-based information, advanced interaction possibilities, collaborative communication tools, action points, models and methodologies, training material etc. allowing patients & caregivers, professionals, stakeholders etc. to actively and constructively interact and reach desired outcomes and goals.
Due to the importance of this IO, its execution was planned through three different phases allowing us to produce an early, a beta version and a final that has been tested and enriched in a second and third iteration in order to have a final prototype.
Following the user centre approach as mentioned also is IO1 as well as agile methodologies, throughout the development process user acceptance studies were conducted in order to get feedback on the “look and feel” and the usability of the system. This also involved the support provision during the pilot phase.
The document at hand is the final version of the respective deliverable “IO3: Design & Development of DEM@ENTORING platform and training material” which has been concluded at the end of the project (May 2021) according to updated work plan.
Intellectual Output 4
The Mentoring Relationship Cycle
Dementia diseases increasingly challenge people and societies across the world, due to the risks of social isolation, economic challenges, and impact on family life. However, this challenge is not just felt and borne by the people with dementia, but also by their friends and families. People with dementia need extra care – and their carers call for more development of knowledge and attention about the challenge before them, about dementia, but also personally in the role as carer.
Being a carer can be a professional choice – often involving training on practical and mental issues and theoretical understandings, that one would face as a professional career. But informal carers are often left with little or no formal training to rely on – and a huge emotional challenge by their direct relation in addition to the challenge of simply being able to maintain a somewhat normal life also.
The Dem@entoring project tries to support these informal carers in three ways – by learning about dementia itself, by learning how to manage the role of being an informal carer and by learning about how to share these experiences with other informal carers.
The Dem@entoring tool
The Dem@entoring tool is an online platform that offers an education and training program. The aim of the program is to provide carers with specific knowledge and skills and to create and train dementia carers as e-mentors to provide mentoring to other carers in the set of peer support groups. The Mentors will be trained on how to deal with the practical and psychological burden of dementia. This training program will focus on carers’ needs providing all the necessary information about dementia symptoms, progression and available treatments, specific skills enabling them to effectively cope with issues related to dementia, training in the management of the physical, psychological and financial burden of dementia.
In addition, Mentors will be trained in mentoring skills to provide their knowledge and experience to other carers – mentees – through the online platform. By joining a dementia support group, Mentees will have the chance to meet and get to know others who are going through the same experiences. They will have the opportunity to discuss topics that are relevant to their situation. They will learn more about dementia and how to cope with caring and finally, they will be part of a peer support group (network) with people sharing common experiences.
An adult learning and education approach have been applied, addressing health and wellbeing to enhance an understanding of dementia for these informal carers and allow them to efficiently cope with the dementia symptoms, jointly raise awareness, and decrease stigmatization. The e-mentoring training program is being implemented in different EU-countries.
What does this guide do?
The Mentoring Relationship Cycle is a guide on how to use the Dem@entoring tool in your organisation. The model takes you through a series of steps that can improve your planning, uptake, and impact of activities, initiatives, and reporting.
The overall aim is not only to create an impact but also to have a circular approach, to reuse and include experiences within your organisation. By applying these steps, continued development across the community of stakeholders and users can be enhanced.
Following the steps, you will have designed a strategy, the necessary templates and tools to be used, created the basis of the necessary cooperation and networking structures, but also a list or database of collaborators and trainers to cooperate with.
Intellectual Output 5
The Mentoring Lifecycle Model
The Mentoring Lifecycle Model allows the interaction between people with dementia, their caregivers, and their families with the aim to help other people in similar situations improve their quality of life using psychosocial interventions with the help of online tools that allow remote training.
The e-mentoring program aims to train mentors to provide support to families and caregivers (formal and informal) of people living with any kind of dementia. During the program, mentors will be trained using Open Education Resources (OER´s) to develop e-mentoring skills and experience (Mentoring Lifecycle-IO4) in order to potentially provide mentoring to caregivers of people with dementia, which means that e-mentors will transfer their knowledge, skills and qualifications, obtained by the e-mentoring courses (IO2). The e-mentors will be trained through the Dem@entoring project’s platform. Experienced e-mentors will recruit new users which will help ensure the program’s sustainability.
The objective of IO5 is to describe to participants how to become e-mentors or mentors through the presentation of the model, various tools and guidelines. The model enables the formation of peer support groups and mentors. The model is designed to be used across multiple languages as a MOOC (a Massive Open Online Course) which allows the users access to the platform and its content.
The Mentoring Lifecycle Model describes how the model can be applied in step by step actions as well as examples of use: The users of the platform will interact with each other online in order to set up mentoring groups (find an e-mentor) based on specific shared characteristics and needs. Essentially, participants will have the opportunity to discuss activities and administrative issues. To discuss dementia care and the issues surrounding it. To organise group activities and forums for discussions. finally, to offer advice and support to new members in order to maintain the circular nature of the program.
This model (IO5) follows the Mentoring Relationship Cycle (IO4) and offers the necessary tools to approach inclusive training, social inclusion, improved administrative efficiency and create communities to help people with dementia and their caregivers to have a good quality of life and alleviate the stigma and stereotypes associated with them. Organisations can subsequently take these two models and apply them to other target groups such as care workers. More specifically, the Dem@entoring platform can be used by professional organizations, like Alzheimer Association or Dementia Day Care Centers, to improve their understanding of the challenges of dementia.