Alzheimer's disease is the most common type of dementia. It is a progressive brain disease that causes problems with memory, thinking and behaviour. Symptoms usually develop slowly and get worse over time. The disease is caused by the death of a large number of nerve cells, resulting in an interruption of signal transmission in the brain. The dying of neurons in the brain leads to a gradual and irreversible deterioration of the patient's condition - loss of memory, difficulties in communication and speech, mood swings, the appearance of aggression, the inability to perform even elementary actions. So far, no cure has been found and Alzheimer's disease has a fatal end. However, there are methods and medications to slow the progression of the disease, especially when diagnosed at an early stage.

It is important to keep in mind that Alzheimer's is not a natural aging process, although the risk of dementia and Alzheimer's disease in particular increases proportionately with age and the majority of patients are over 65. About 5% of cases are of people between 40 and 50 years of age. Therefore, due to increasing life expectancy and correspondingly an increasing percentage of elderly people, the number of patients is expected to triple by 2050 worldwide.

Since the consequences of Alzheimer's disease usually directly affect and are devastating not only for the patient but also for the relatives who are involved in his or her care, the victims of the disease are actually much more numerous. These statistics have led leading experts in the field to describe Alzheimer's disease as "the epidemic of the 21st century”.

As it is a progressive disease (which means that the structures and chemistry in the brain become increasingly damaged over time) the manifestations of dementia worsen with the years (such as a person's ability to remember, understand, communicate and reflect gradually declines). In the beginning the memory loss is very mild, but gradually it progresses to complete inability to handle even routine chores.

The main symptoms are the same throughout the disease, but worsen as the years go by, with new symptoms gradually appearing. The symptoms are as follows: memory loss, specifically recent memory; problems with expression and communication; difficulty learning new tasks; inability to comprehend; general confusion, disorientation in time and/or space; difficulty with abstract thinking, lapses in judgment; difficulty performing familiar activities; behavioural and personality changes; sudden mood swings, lack of initiative/apathy.

They can be divided into two groups – cognitive (memory related) and non-cognitive (related to other physical or behavioral problems) symptoms. The development of symptoms is due to structural changes in various centres of the brain and cerebral cortex. The more these changes are worsened, the more the symptoms are expressed in the patient's life, gradually leading to their complete dependence on others. In the beginning, patients cannot cope with complex tasks and new activities, the most common being errors in dealing with finances, difficulties in using the telephone and public transport. As the disease progresses, performance of all activities is impaired to the point of inability to self-care.

Alzheimer’s disease can also be defined within 4 stages of the disease: mild, moderate, advanced and terminal. Of course, there can be variations in the subdivision of the phases, but these stages are important when deciding what kind of treatment is appropriate for the patient.

The initial stage – mild/early dementia:
Memory loss and other cognitive impairments are mild, but become increasingly noticeable. The person can still cope with the symptoms, compensate for them and continue to function independently. Characteristics of this stage can be: mild aphasia, avoiding unfamiliar places, difficulty writing and using some objects, manifestation of apathy and depression, need for reminders for some activities of daily living.

Intermediate stage - moderate dementia:
Changes become more noticeable. The harm they bring to the patient becomes more and more visible. Mental functions weaken, personality changes. Problems on the physical level begin to manifest. The person becomes more and more dependent on someone else’s care for daily activities. Characteristics of this stage can be: impaired memory of recent events, moderate aphasia, getting lost in unfamiliar places, lack of ability to perform complex acquired habits, depression, restlessness, agitation, need not only for reminders, but also for assistance with most activities of daily living.

Late stage – advanced dementia
Symptoms intensify as does personality change. The person becomes increasingly dependent on somebody else’s care. Characteristics of this stage can be: confusion of time (present and past), expressive and receptive aphasia, does not recognize familiar places, abnormal slow performance of movements, delusions, confusion, needs reminders and assistance with all activities of daily living.

Terminal stage of dementia
Complete personality deterioration. Physical problems dominate, loss of control over bodily functions. The person is totally dependent on somebody else’s care for even the simplest activities. Characteristics of this stage can be: lack of connection between present and past, hardly speaks, lack of reaction to the world around, few spontaneous movements, complete passivity, inability to care for oneself.

The symptoms of these stages do not develop in a linear progression. Some symptoms may manifest earlier or later than described in the established phases, or may not manifest at all. Also, some patients move from phase to phase in a periodic recurrence. The phases may also overlap - some patients cope with some tasks and not with others, i.e. they exhibit symptoms of two phases simultaneously as if they were in them at the same time. Some symptoms may appear and then disappear, for example loss of orientation. But memory loss always gets worse with time.

The exact duration of the phases cannot be determined either. Just as each person is completely unique, so is the course of the disease - everyone goes through a particular phase for a different amount of time. How a person's illness progresses depends very much on personal subjective factors such as age, the presence or absence of other illnesses, the level of care and support they receive.

Dementia is another important term that needs to be defined when talking about Alzheimer’s disease. Dementia is a syndrome characterized by a decline in multiple cognitive functions significant enough to disrupt patients' activities of daily living and occurring at a normal level of consciousness. Most typical of dementing illnesses is the decline of mental abilities and functions such as memory, language, thinking, planning, and recognition of people and objects. The impairments are beyond what is accepted as the normal range as one ages. Symptoms gradually erode the ability to perform daily activities such as driving, housework, even personal care such as toileting, dressing, eating.

Dementia can be caused by one or several health problems. Among the main and known to science causes are: vascular diseases, infections, injuries, intoxications, genetic, metabolic and neoplastic diseases. There are still many types of dementia for which it is not known what causes them, for example Alzheimer's disease. These dementias are classified as 'degenerative'. The term was chosen to indicate that their root cause is unknown, and that they are irreversible and there is as yet no known cure for them.

Some types of dementia can be partially or completely cured. The extent of the cure usually depends on how quickly the root cause of the disease is found and how quickly it is treated. However, some forms of dementia are irreversible and there is no cure for them, such as dementia due to Alzheimer's disease.

Scientists are working on finding a cure for the Alzheimer’s disease, but there is no approved medicine so far. There are drugs for treatment of the Alzheimer’s disease’s symptoms such as Rivastigmine and Galantamine for treatment of mild to moderate phase and Donepezil and Memantine for treatment of moderate to advanced phase.

These drugs work by regulating neurotransmitters - the chemicals that carry information messages between neurons. They can also have a positive impact on certain behavioural syndromes. Treatment can be given in combination with other medications and results in significant improvements in patients' cognitive function, overall functioning and activities of daily living, as well as slowing the progression of the disease.

There are also different non-medical therapies and treatments for coping with the symptoms of the disease. These approaches improve communication with the patient and stimulate his/her cognition, memory, orientation, etc. which helps for dealing with present symptoms, but also for slowing down the pace of the disease. In this kind of treatment different areas are integrated in care such as technology, art, animals, sport, etc.

The AIDA methodology proposes innovation by integrating two areas in care – technology and art, which makes another step forward in the creation of more effective therapies for people with dementia.

Why did we apply for this project? What are the needs we plan to address?

Social inclusion lies at the very base of the society, which needs to be encouraged and promoted in order include disadvantaged and underrepresented users such as Alzheimer's patients. In 2016, WHO and ADI (Alzheimer's Disease International) Report, dementia was defined as 'a global public health priority'. Recently, it has been estimated that there are around 46 million people in the world suffering from dementia, 50-60% of whom have Alzheimer's disease. Due to an ageing population, the number of cases will triple in the next 30 years and by 2050 one in 85 people worldwide will be affected, for a total of 130 million people. Therefore, it is evident that there is a need to increase and expand the training of professionals who already work with Alzheimer's patients through innovative practices, by creating a network and a team of experts.

The primary objective is to improve the quality of life of people with dementia and their caregivers, to promote respect for their dignity, to reduce the negative impact on communities and states by raising awareness and making dementia a priority. The ageing of the population implies an increase in leisure time for a growing segment of the population and requires specific dedicated services. Embracing the concept of lifelong learning, there is a need to design and promote activities and initiatives involving actors outside the health and social service. The promotion of such activities demonstrates the importance of the concept of lifelong learning because by stimulating the elderly to learn and to confront themselves with others, we may solve the problem of loneliness, combining culture and sharing. Seniors are more and more recognized as a social resource and not only as a “delicate” group with complex needs.

This awareness is also gaining importance in the medical-health field where there is a shift from a practice aimed at 'producing healing' to that of 'caring', that is, taking care of the patient. And it is from here that the GentleCare model (Moyra Jones) was developed: it starts from the premise of how a person with dementia undergoes a modification in their abilities to interact with reality. It will then be useful to build a 'prosthesis' around them to compensate and help them maintain their autonomyfor as long as possible and to minimize stressful situations that cause agitation, anxiety and aggression.

AIDA stands as a practice in response to these needs and as a means to help this category to react in the post-Covid-19 society and to get out of the state of loneliness that the pandemic has caused. It is well documented that culture nourishes and heals the fragile. The world of culture, the world of health and the world of the digital world must develop an alliance aimed at re- giving hope to the treatment centers, considering homes as refuges and squares as places of exchange; the body and soul of each person is to be seen as a starting point and not as an unbearable burden.

What do we want to achieve by implementing the project?

The project starts from the analysis of existing practices, the study of the consortium's experiences and the need to develop a unique working methodology, able to make society more friendly and improve the living conditions of people with Alzheimer's and their caregivers.

The overall objective is to create a new approach for people with Alzheimer's in order to improve 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:

• 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 experimentation paths 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;
• Creation of an international network of experts;
• Contribution to the creation of a more friendly and accessible society.

What activities are we going to implement?

The work plan is based on the idea of creating a triangulated exchange between the partners from the three project areas. They will work together to:

• promote and disseminate activities at local and national level;
• co-create the LTTA programs and Project Results, based on the different experiences and needs emerging from the analysis of the Alzheimer's sector scenario;
• co-produce the learning-scenarios, the basis from which to organize and conduct local activities, and then the case-studies;
• organize and promote local involvement activities in the territories of reference
• produce material for the website and platform.

What results and other outcomes do we expect our project to have?

There are examples of networks created to improve the conditions of this fragile category, but there is no trace of the existence of a triangulation that foresees the co-creation and co-participation of the social-health, artistic-cultural and digital spheres to conceive and pilot a cross-sectoral Methodology: this is the primary objective of AIDA. The project will allow to join these fields in a triangulation of interdisciplinary skills; AIDA invests and focuses on the training of professionals of the three sectors, on the creation of learning scenarios and case-studies that will then have a direct effecton patients and their caregivers. The project proposes to start from the exchange of multidisciplinary, innovative and effective practices coming from the experiences already consolidated by the partners, in order to create a European multidisciplinary team able to create the AIDA methodology and recognize it as a non-pharmacological therapy.

Specifically, the tangible results will be:

• AIDA methodology (Project Result 1);
• Materials and guidelines for the 2 training meetings (LTTA)
• Validation of the Project Results through the Territorial Experimentation in each country and the consequent creation of products and data (Project Result 2);
• Project platform on Open-Source HUBS by Mozilla (Project Result 3);
• Project website;
• 2 Scientific articles;
• Production of digital and printed materials for communication and dissemination;
• At least 21 learning scenarios;
• At least 14 case studies;
• At least 21 trained professionals;
• AIDA methodology;
• 1 Training Toolkit

Non-tangible results:

• At least 84 (14*6) Alzheimer's patients and family members/caregivers involved in territorial pilots/projects based on the developed and shared learning scenarios;
• Improvement of the socio-health, artistic-cultural and digital skills of the different target groups;
• Improvement of the well- being of people with Alzheimer's and their families/caregivers;
• Increased awareness of the issue in civil society;
• European network composed of professionals trained in the topics, methodologies and tools of the areas of interest of the project.

The AIDA piloting in Bulgaria was launched successfully on the 26-th of April in the National Polytechnic Museum in Sofia. The participants are people with dementia and their relatives. They learned more about the project and interviews with them were conducted. They also had the opportunity to have a walk around the National Polytechnic Museum discussing the exhibits with the guides. The caregivers and the people with dementia enjoyed their time together and are optimistic for the next sessions. One of the participants noted excitedly “We had the opportunity to dive into the past!”

Another participant at an early stage of dementia shared with his daughter the following impressions from the sessions:

“The introductory meeting with the AIDA project team impressed me with the warm and friendly attitude of Irina, Kalina and Maya. During the presentation of information about the project and the interviews they did, they tried very hard to make us feel free and comfortable."

Also, they had chosen a very suitable location for the meeting because regardless of the person's age, when you are in a museum, you can always see or learn something interesting and new regardless of your age.

We - the sick, as well as our careers, felt the attention of everyone we met today. They moved chairs in front of each of the exhibits we visited today, so that we could feel comfortable and focus our full attention on listening to the information about them.

I would also like to express my gratitude to the staff at the museum who gave us special attention. Starting with getting around because there was a person in a wheelchair, going through the fact that they tried to speak slowly, loudly, clearly and briefly, and ending with the fact that the exhibits we looked at were selected according to the professions we practiced or our interests and hobbies.

Today's afternoon brought me the excitement and satisfaction of meeting the new and interesting things that were arranged for us. I am excited about our next meeting and I am looking forward to it.

Alzheimer Bulgaria presented the AIDA project at the 13th "Panhellenic Conference on Alzheimer's Disease (PICAD)" and the 5th "Mediterranean Conference on Neurodegenerative Diseases (MECOND)" in Thessaloniki, Greece.

From February 9-12, 2023, the 13th "PANHELENIAN CONFERENCE ON ALZHEIMER'S DISEASE (PICAD)" and the 5th "MEDITERRANEAN CONFERENCE ON NON-HEALT DISEASES (MECOND)" took place in Thessaloniki, Greece. The conference was a hybrid conference to allow scientists, volunteers, and NGOs involved in the topic to present their scientific findings and new ideas to help prevent neurodegenerative diseases across the board.

Angelina Kancheva represented Alzheimer Bulgaria with the project AIDA - Alzheimer patients Interaction through Digital and Arts. In her presentation, she highlighted pressing issues that affect society in the context of dementia - the growing number of people suffering from Alzheimer's Disease and the need to take preventive measures to improve their care and quality of life, as well as protect their civil rights. She also presented the main objectives of AIDA - to enrich and improve the quality of life of people with dementia through the integration of art, technology, and clinical care, and the aspiration towards a dementia friendlier society for patients and caregivers alike.

Angelina is a volunteer from Alzheimer Bulgaria. She is currently doing her PhD as part of the Doctoral Training Program in Precision Medicine offered by the University of Edinburgh in collaboration with the University of Glasgow and the Karolinska Institute in Sweden. Her primary project is based in Glasgow and aims to describe the complete clinical phenotype of cerebrovascular small vessel disease, a significant contributor to cognitive decline, stroke, and dementia.

You can read more about the conference HERE

Expressing ourselves creatively, emotionally and intellectually is a fundamental part of being human. Art can help us use our imagination to connect with and find some understanding of the world around us. People living with dementia still have the same basic needs to engage with art, culture and heritage, to have meaningful experiences and to be treated with respect.

The Meet Me at MOMA program in New York, grew out of a recognition that people living with dementia faced challenges in accessing art and culture. Using a grant from the Met Life Foundation in 2007, the team at MOMA built on their enquiry based educational model and knowledge of dementia to create the Meet Me program. Art facilitators spend about an hour with a group of people living with dementia and their family members looking at three art works. The facilitator invites the group to make observations about what they are looking at and through these observations the group builds an interpretation of the work. From this interpretation, members of the group make a personal connection to the art work. Personal relationships with family members re-emerged as both the person living with dementia and the carer engage with the art work. Using humour, fun and openness, the facilitator can find ways round the challenges that dementia presents to reach the individual behind the diagnosis. The spark of this methodology lights up the person and helps them connect through emotions and all their senses.

Today, MOMA sees themselves as a connector across the globe. They share their program through workshops, their website and a book. They have trained thousands of facilitators in the US and around the world. Those facilitators have passed that learning onto thousands of others. The Meet Me program is now a worldwide success story.

In 2012, four organisations came together in Ireland to see how they could help people living with dementia to be more involved in cultural spaces in Ireland. The Butler Gallery and the Irish Museum of Modern Art worked together with Age and Opportunity and Alzheimer’s Society of Ireland to tailor the Meet Me programme to Irish audiences. Being in the moment with art was core to the newly designed Azure Tours. No prior knowledge of art was required, participants were simply invited to take part in slow looking and spending time with the art works. People living with dementia attended the sessions with family members. Relationships changed from patient/carer back to family members enjoying an activity together. The Azure art tours are now available in art galleries and museums across Ireland.

The OPW has recently trained guides in the Azure methodology and has started to offer Azure tours across some of the sites in our care. We are delighted to be part of the AIDA Erasmus project and are focusing on looking at new ways to help our audiences to engage with heritage. We are working with the Alzheimer’s Society of Ireland and psychologists at Dublin City University to test new ideas and learn from people living with Alzheimer’s in Ireland.

Check out:

• www.heritageireland.com
• MOMA Training resources for running dementia friendly art looking tours
• IMMA Gallery, Ireland, tours and resources for running dementia friendly art tours
• IMMA video demonstration of Azure tour for people living with dementia.

The historical period we find ourselves living through has called into question all the certainties and stabilities on which society and, in general, the entire world rested. The Covid-19 emergency has generated a crisis that affects all sectors and policies and for which answers are being sought that will allow us to move forward. Obviously, one of the most critical issues concerns health and care, not only for those who directly fell victim to the pandemic but also for those who, in various ways, were severely affected by the lockdown period and its aftermath, which we are still experiencing today. This is referred to as post-traumatic disorder, which appears after severe events such as terrorist acts, accidents, and earthquakes and in which, unfortunately, the COVID-19 epidemic also falls. Help for the health system could come from the world of art, museums and digital technology. The key lies in seeing the museum and the digital under a new aspect. The former is no longer just a place of preservation and exhibition, but a space at the service of citizens, where works of art become a “tool” for the promotion of care and well-being. The second is support capable of offering useful resources in both the health and cultural spheres. In view of the problems of the current historical period, technologies represent a particularly flourishing field of application. The AIDA- Alzheimer's patients Interaction through Digital and Arts Project stands as a practice in response to these needs and as a means to help people with Alzheimer's and their caregivers to react in the post-Covid-19 society and to get out of the state of loneliness that the pandemic has caused. It is well documented that culture nurtures and heals fragile people because it moves deep chords with appropriate languages. The world of culture, the world of health, and the world of digital must develop an alliance aimed at making places of care places of hope again, homes as refugees, squares as places of exchange, the body and soul of each person as a starting point and not as an unbearable burden.

On 2 July, AIDA was presented during the event 'Immersive Realities for Accessibility', organised as part of the Social Hackathon Umbria 2022 in Montefalco, Umbria, Italy. The seminar included a multidisciplinary panel discussion on the role of extended reality (XR) in breaking down physical, mental and social barriers by facilitating access to education and cultural heritage. AIDA was proposed as a good practice for digital inclusion and accessibility. Indeed, among the deliverables to be produced, the project includes creating a space within Mozilla Hubs, the virtual reality (VR) platform created by Mozilla's Mixed Reality team.

Last May 5 and 6, 2022, Fondazione Patrizio Paoletti, lead partner of AIDA project, held the Kick Off meeting in Rome to present the project objectives and results to be achieved.

The meeting was attended by the project partners from Denmark, Greece, Ireland, Italy, Bulgaria and Slovenia.

During the Kick Off meeting all partners were involved in developing ideas and measures to improve the quality of life of Alzheimer’s patients through AIDA project. In particular thank to brainstorming activity focused on the fields of art and digital, ideas were developed to foster awareness in society regarding the problem of Alzheimer and spread sensitivity on this issue.

In addition it was an opportunity for all partners to organise next activities and to coordinate in the development of project results.

Read more about AIDA project by clicking here!

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