A Catalan-led European research project will involve caregivers of people with Alzheimer's in creating ICT tools to make their lives easier

About 50 million people worldwide are currently suffering from dementia, and 10 million new cases are identified every year, according to the World Health Organization (WHO), which considers it an increasingly common chronic disease. In this context, a European research project has just been launched which aims to develop ICT tools designed to facilitate everyday care for people with Alzheimer's disease, the most common type of dementia.

The project is called 'Co-Created ICT Solutions for Alzheimer's Informal Caregiving' (Co-Care), and is being led by researchers at the University of Vic - Central University of Catalonia (UVic-UCC), through the Methodology, methods, models and outcomes of health and social sciences (M3O) and Digital Care research groups, with the participation of two other Catalan partners: the Pasqual Maragall Foundation for Alzheimer's research and Confluència Solucions de Convergència Digital i Mobilitat. Seven other partners from Portugal, the United Kingdom and Belgium are also involved.

Technology at the service of people with Alzheimer's and their caregivers

Academic stakeholders - primarily universities offering bachelor's degree courses in the fields of health, social and technology but also the business world - are taking part in the project to design and apply new technological products and services to make life easier for people suffering from Alzheimer's disease and their caregivers. However, it will directly involve the end users - both the caregivers and those in their care. "Dementia is one of the main causes of disability and dependence among elderly people, and it has a physical, psychological, social and economic impact not only on Alzheimer's patients, but also on their caregivers and families and on society in general," says Anna Ramon, the coordinator of the project and a researcher in the M3O research group.

Precisely for this reason, adds Ramon, "the involvement of caregivers in designing the tools will be one of the hallmarks of the project, and their participation from the outset "will ensure that the products are the most suitable for their needs, and therefore ensure greater usability and efficiency." According to the researcher, the ultimate goal is to "improve the quality of life of people with Alzheimer's disease and of their caregivers, which is why the tools developed will primarily be used to improve the quality of care that informal caregivers provide for people suffering from the disease, to create a social network for them to support each other, and to help them stay healthy."

A multidisciplinary project

The project, which officially began on 1 January, will last 3 years and is being carried out within the framework of the Knowledge Alliances call of the Erasmus+ programme, which organises transnational activities by higher education institutions and businesses. 

Researchers from two UVic-UCC research groups and two different faculties - the Faculty of Science and Technology, and the Faculty of Health and Sciences and Welfare - are involved in Co-Care, "to provide a response in the two areas of the project: the health and social sphere, and the technological sphere," says Anna Ramon. In addition to Dr Ramon, the other participants from UVic-UCC will be Josan Merchan, Eduard Minobes and Montse Romero, who belong to the M3O research group, and Cristina Borralleras and Sergi Grau, a member of the Digital Care group. This experience also aims to improve the learning process for students on bachelor's degree courses in the fields of health and social sciences and technological disciplines, as one of its indirect aims is to improve training programmes on courses by means of applied experiences from an interdisciplinary and person-centred perspective.

The other two partners involved are the Pasqual Maragall Foundation and Confluència Solucions de Convergència Digital i Mobilitat, a company specialising in ICTs. The former will provide its knowledge of the disease and facilitate contact with caregivers, and the latter will provide its expertise in developing technological solutions in the healthcare field.

COVID-19 highlights the key role of this project

Despite the launch of Co-Care last January, the need for spaces, tools and resources such as those it offers has become more apparent than ever with the onset of the Covid-19 health emergency. Both people with Alzheimer's and their caregivers, as well as society as a whole, have had to cope with an unprecedented new situation that may have had a significant impact on these two groups.

"Breaking the routines that people with Alzheimer's had, such as receiving home care, visiting relatives, attending a day centre and keeping medical appointments can have a direct impact on their well-being, increasing the anxiety, apathy or confusion of the person who is affected, and making the situation much more difficult for the caregiver, who has also become much more isolated as a result of the lockdown," explains Glòria Mas, a therapist at the Pasqual Maragall Foundation.

According to the researchers, the conclusion that can be drawn from the current situation is that the resources that Co-care is developing will be very helpful in health emergencies such as the one we have experienced in recent months, or in similar situations. "The opportunity for them to have access to a community of people who are experiencing circumstances similar to their own is very valuable, because it means they can feel understood, they can gain strength from the experience of others, they can avoid isolation, share their concerns and well-being, find creative or alternative strategies and solutions, and enhance the bonds of support and help in the caregiver community. That's why in a situation like the present, they will enable caregivers to become connected to overcome the loneliness involved in not being able to go out and ask for support, help or advice when caring for people with Alzheimer's," concludes Mas. Meanwhile, the project's other results, such as training for students and professionals in the health, social and technological fields and the project Toolkit will also have a virtual format, also as a result of the current circumstances.

First meeting in Vic

All the Co-Care partners held a first working meeting at UVic-UCC last February, at which they spent three days discussing the main milestones in the project, and the methodology and the schedule to be adopted. In addition, "we assessed the challenges and opportunities that the project can provide in order to take full advantage of them," explains Anna Ramon. She says that the next steps "will be deploying the first thematic area, preparing the communication strategy and each institution's internal affairs, which will help to take the project forward successfully."