Alzheimer patients Interaction through Digital and Arts

AIDA was designed to support caregivers (both experts and family members) of people suffering from dementia/Alzheimer and give them tools to enhance their quality of life and overall wellbeing. Social inclusion lies at the very base of society, and it needs to be encouraged and promoted in order to include disadvantaged and underrepresented users such as Alzheimer/dementia patients. In 2016 WHO and Alzheimer Disease International Report, dementia was defined as a global public health priority. It has been estimated that around 46 million people in the world suffer from dementia, 50-60% of whom have Alzheimer disease. Due to an ageing population by 2050 one in 85 people worldwide will be affected, for a total of 130 million people. It is paramount to increase and expand the training of professionals who already work with Alzheimer patients through innovative practices. AIDA approach is a practice in response to these needs by alleviating the state of loneliness that the COVID pandemic has caused.

The objective of the project was to create a new approach to support people with Alzheimer's and Dementia improving their quality of life and that of their caregivers, their social relationships, their environment and the services they receive. Specific objectives: - exchange of good practices and experiences; - development of a new methodology and working tools; - creation of the AIDA space in the HUBS platform. Results expected: - at least 21 learning scenarios to be created on the basis of good practices and experiences; - at least 21 professionals from the social, health, arts, culture and digital fields to be trained in the AIDA Methodology; - 6 territorial teams that will pilot the Methodology at local level; - 12 piloting sessions of the Methodology activated in the 6 countries of the consortium; - Report containing analysis and study of the results obtained; - 1 methodology developed and validated; - Contribution to the creation of a more friendly and accessible society.

During the project implementation the consortium has focused on the design, development, implementation of three main project results: -AIDA Methodology (PR1). It combines the experiences and know-how of social-medical, cultural-museum and digital fields in a single innovative approach, replicable and implementable. The first activity carried out for the development of the result was a thorough review of the existent scientific literature and best practices regarding state of the art museal/artistic interventions using digital/technological methods in participants with Alzheimer’s Disease (PWAD) or dementia. The activity, closed with a summative report, lead to the identification of the main three areas at the centre of the design and development of the methodological/theoretical framework (PR1-A1). In the second phase, the Activity Leader prepared a survey to be distributed among the partnership and also to external experts, according to their expertise in clinical, cultural and technological fields, with the goal of collecting information and data in three main categories: (1) Existing programs and methodologies implemented in the project countries or that the partners are aware of, (2) Evidence from Case Reports, and (3) General Guidelines for working with these patients participants with Alzheimer’s Disease (PWAD) or dementia (PR1-A2). After having gathered all the necessary data the result leader designed the AIDA methodology. The methodology was designed around three different phases, each one addressing a different combination of digital and artistical tools: • Art-Exploring: Guided tours in museums and places of historical/naturalistic significance; manipulation through augmented reality of historical artefacts; collective discussions with facilitators and caregivers. • Art-Making: First-person involvement in creating, digitally or analogically, art in different forms, ranging from painting to photography. Assisted by trained facilitators and guided through shared discussions. • Personal Gallery: A small session in which participants and experts/caregivers are showed a virtual space of the project (AIDA HUIBS). For those interested, a collection of works from the sessions can be arranged in the same virtual environment as a “personal museum”, in which participants privately showcase, assisted by their caregivers and facilitators, work of arts particularly appreciated or made by them. (PR1-A3). As an integral part of the Methodology, the consortium developed 23 learning scenarios (PR1-A4) that met the criteria of the AIDA Methodology: out of these the consortium has selected 18 learning scenarios to be implemented in local activities at cultural sites (PR2). Each partner could implement 2 or 3 scenarios (15 were implemented during the piloting). The methodology was finalized after the piloting, with the analysis of the data collected and the development of the Toolkit. (PR1-A5). -Piloting on the Territory (R2). The piloting of the Methodology and its learning scenarios was planned by the Project Partners in a cycle of meetings with people with Alzheimer/dementia and their caregivers at cultural heritage sites based in the countries involved. The data from the experiences was collected with a series of tools and reported in the form of case studies later digitized to be uploaded on Mozilla Hubs. The first step for the implementation of the piloting PR2 has been the development of the guidelines by Alzheimer Bulgaria (leader of the project result) and the rest of the partnership (PR2-A1) for the implementation of local activities with the caregivers and the people with Alzheimer and dementia. These guidelines contained all aspects useful to the professionals to carry out the sessions for the piloting of local activities, and specifically: • Description of the beneficiaries; • The logistics of the piloting; • Guidelines for piloting Implementation; • How to manage challenges in implementation (Planning, Location, Refusal to participate in the activities, Expert reference); • How to work with people with Alzheimer's Disease/Dementia (instructions/suggestions); • Monitoring and Evaluation; • Case Studies Collection and instructions. Fondazione Patrizio Paoletti, leader in the development of the Methodology, also developed the tools for data collection and evaluation, specifically: • Data collection template; • Visual Analogue Scale A and B; • Semi Structured Interview; • Case studies template. PR2 -A2/A3 - Local activities at national level have started at the beginning of 2023 and have continued during the whole year due to the difference in the involvement of the National Ethical Committees. In Greece and Italy it was not possible to obtain approval due to the extensive time needed, therefore the piloting was implemented with the support of the local medical/health associate partners and the data collected only regarded the caregivers. FPP developed the tools for monitoring and evaluation and the data from the implementation was collected in a final report containing the details of the piloting in each project country PR2 – A5. The partners also collected and developed the case studies resulting from the implementation activity to be uploaded on the AIDA Hubs. (PR2 – A4) -AIDA HUBS (PR3) consists of a visitable account of AIDA activities that everyone can experience through the platform and a virtual reality environment. This space also serves as a virtual space to create a network of professionals for the exchange and creation of new content. CRHACK LAB, leader of PR3, presented the HUBS platform during the project KoM held in Rome in May 2022. Subsequently, the CL organized a first workshop during the first LTTA C1,held in Foligno in July 2022. During this HUBS introduction session, the participants started to discover the platform and understand the potential for AIDA activities. The session was very important in defining the characteristics that AIDA HUBS should have and allowed the partners to start outlining the guidelines for the production of the materials that will then be hosted and promoted on the platform. During the second LTTA_C2, held in Sofia in November 2022, an entire session was dedicated to the discussion of AIDA HUBS. The first part of the session was an explanation of the functions of the platform; participants tried to create their own environment, being able to understand in advance any problems with HUBS, so that they would know how to handle them in the future. More guidelines were defined regarding what the environment should look like and how it should be structured. At the end of November 2022, after careful selection, CL shared 3 'example' environments with all partners as a starting point for the creation of AIDA HUBS. The partners selected one of the environments, which would be the example from which CL practitioners started the development of AIDA HUBS (PR3 - A1). The learning scenarios developed within the AIDA Methodology were implemented during the piloting of PR2. From the activities carried out in each country, feedback and information were collected and reported in the case studies and in the reports of the national pilotings. Each scenario, therefore, has its reference case study (PR3 - A2). The development of the template for the case studies was carried out with the support of OPW. The learning scenarios and case studies have been digitized and uploaded to the AIDA HUBS platform (PR3 - A3/A4). AIDA HUBS serves as the virtual platform of AIDA, with multiple functions: - Creating a network of professionals for the exchange and creation of new content - Allowing participants in PR2 activities to relive the experience they had in the museums at home - Providing materials and guidelines for implementing AIDA in other heritage locations The link to the platform is available on the AIDA website. Materials contained in AIDA HUBS are also on the website and downloadable from both. During the Multiplier Events, partners organized a virtual tour session (PR3- A5) in AIDA HUBS to present and narrate the experience and illustrate how to use the platform.

The concrete and expected results of AIDA were the AIDA Methodology (PR1), Piloting activities (PR2) and AIDA Hubs (PR3). The AIDA Methodology (PR1) combines the experiences and know-how of the three fields of socio-medical, cultural-museum and digital into one innovative, replicable and implementable approach. The development of the Methodology included the creation of learning scenarios and a Toolkit for practitioners/educators/operators/caregivers, to be implemented during local activities for patients. The Methodology is innovative as the three project sectors promote activities for people with Alzheimer/dementia disease and their caregivers but don’t always do it in an integrated way within one single approach. Thanks to the Methodology, professionals from the three sectors have a real opportunity to, exchange points of view thanks to the experience in implementing the AIDA methodology and create a sort of round table where everyone can bring their skills, knowledge, and experience to work towards a single goal: finding a method to help slow down the Alzheimer/dementia course and help keep the quality of life of people and their carers high. Starting from the learning scenarios developed in the AIDA Methodology, the project partners created a set of piloting session with people with dementia and their caregivers at cultural heritage sites collecting the experiences in the form of case studies (PR2). The third main result is AIDA HUBS (PR3), a visitable account of AIDA activities that everyone can experience through the open source platform and through a virtual reality environment. This space also serves as a virtual platform to support professionals sharing with them the result of experiences undertaken at local level, the learning scenarios and the methodology. Other concrete results were 2 Scientific articles, the AIDA website and the social media channels.