“The first session of Café Memória stays at home was a great success” says Catarina Alvarez, the person behind this unique project which promotes informal meetings between caregivers and people with memory problems and dementia, with the support of technicians, social services and volunteers.
In a country where it is estimated that a total of 200.00o people have dementia and need full-time general care, these meetings are an important platform of support and allow the participants to share their experiences, which are often invisible, but have a significant impact on society. In 2018 and 2019, this project had already tested another format: it started promoting their meetings in isolated villages across the country and became Café Memória On the Road. Now, under different circumstances that make the physical meetings impossible, the project has adopted a new form: Café Memória stays at home.
The first virtual session happened on the 18th of April and exceeded the initial expectations in every regard, with about 100 people connected through the platform, which is the maximum of users that can be simultaneously logged on. “When the meeting started it was very exciting to see so many familiar faces, the usual participants of the Café Memória meetings, but also of those who were meeting with us for the first time, along with volunteers and technicians”. Not everyone was able to enter the meeting so “in the next session, the access will be expanded so that everyone has a chance to participate”, says Catarina.
Isabel Sousa, who also leads the project, was very pleased with the attendance and emphasized the commitment of the 20 teams of Café Memória who were able to adapt to this new format and the effort made to translate into the virtual world the atmosphere of the presential meetings. Another point stressed by Isabel is the fact that this format allows new people to join these meetings, people that were previously unable to do so because of geographical proximity.
Maintaining the structure of presential meetings, this session had a main speaker, Nuno Antunes, a psychologist at Alzheimer Portugal, who presented a set of “Tips on how to live a better life in times of confinement”. He also proposed some strategies for dealing with people with dementia, underlining the importance of giving them the explanation they need, in the best possible way, according to the complexity of the situation. Among other techniques, Nuno also recommended the use of reminders and notes with drawings in order to illustrate the necessary hand washing techniques. Moreover, he stressed the importance of clearly communicating that the need for confinement is enforced by figures of authority and that, by staying at home, we are contributing for a faster resolution of the situation.
The participants have also had the opportunity for posing questions related with this topic and sharing the difficulties they have had to face alongside their caregivers with the change in daily routines imposed by the confinement. Following this moment, Nuno was able to suggest a set of strategies and relaxation techniques that can improve the way caregivers are dealing with new daily routines.
Jorge and Antonieta
Among the regular participants of the meetings of Café Memória are the couple Jorge and Antonieta Barreiros. She is now 77 years old and was diagnosed with Alzheimer 7 years ago. From that moment on, her husband became her caregiver. They have been married for 51 years and live in Cadaval, a village on the hillside of Serra de Montejunto, since Antonieta fell ill. The lack of support is a problem. Their 3 children and their grandchildren live in Lisbon and cannot visit as often as they wish. Jorge also regrets that the statute of the caregiver, which has been discussed for a long time, is still very vague and does not imply effective measures.
In their current situation, Café Memória is one of the few chances they have to make contact with the exterior and for Antonieta, who is very communicative, to interact with other people. Jorge explains that, as days go by, Antonieta is having more difficulties recognizing people and that this leads to inevitable isolation. She is not comfortable speaking to people whom she does not recognize anymore, and people also end up feeling there is no middle ground which allows them to maintain contact.
Jorge first learned of Café Memória through a newspaper ad. He first went to a meeting all by himself and did not feel tempted to take his wife with him. But a year after, as her condition got worse, he started taking her to the meetings, which quickly became an opportunity for Antonieta to establish a social life and for Jorge to listen to the advice of specialists on themes related to his wife’s condition in order to learn how to cope better with the situation.
Since its creation, in 2013, Café Memória has become, for many patients and caregivers, their only way of having a social life because the tendency for isolation is remarkably high in these cases. Nowadays, there are 20 active groups that meet in several cities like Cascais, Oeiras, Sintra, Braga, Viana do Castelo, Esposende, Porto, Viseu, Guimarães, Madeira, Barcelos, Almada, Évora, Barreiro, Sesimbra and Mirandela. In Lisbon alone there are 4 groups of Café Memória.
With the coordination of Associação Alzheimer Portugal, Café Memória is a project supported by The Calouste Gulbenkian Foundation, Fundação Montepio, Instituto de Ciências da Saúde da Universidade Católica Portuguesa, Sonae Sierra and about 60 local partners.
Until the end of August there are 20 new meetings already scheduled in this new format. “Café Memória stays at home” happens on Saturdays at 11h.
Café Memória – how the project started
The concept of Memory Café was born to combat the stigma associated with the several forms of dementia and has a strong presence in the United Kingdom, as well as in other European countries and around the world. In Portugal, the idea to adapt Memory Café came from Sonae Sierra, who then suggested it to Associação Alzheimer Portugal. This Association was already developing a project targeting people with dementia – the project Cuidar Melhor -, which was financed and supported by The Calouste Gulbenkian Foundation and Fundação Montepio, with the scientific support of Instituto de Ciências da Saúde da Universidade Católica Portuguesa.
The initial partnership of this project was extended and Café Memória integrated Cuidar Melhor, with a team of coordinators and technicians devoted to it. Both of these fields of action are complementary: on the one hand Café Memória is able to welcome, receive, advise and provide emotional help to the people with dementia and their caregivers; on the other hand, Cuidar Melhor, being capable of a more specialized and technical approach, can provide them with psychological help and legal aid, but also with a wide offer of medical services. The fist offices of Cuidar Melhor were created in Cascais, Oeiras and Sintra, in a close collaboration with the technical staff of those municipalities. More recently, another two offices of Cuidar Melhor have opened, one in Almada and another one in Peniche.