Fuerteventura’s Association of Families of people suffering from Alzheimer’s and other dementias (AFFA) “The workshops we organise are aimed at professional carers and families”

FMHOY - Fuerteventura

What is AFFA?

Teresa - It is an association of families where people with common needs got together, which was to care for others who suffer from some kind of dementia and who were not cared for sufficiently.

The attention they were receiving was not sufficient and remains that way, because Alzheimer’s disease is a chronic and very long disease, which is why we try to get sufferers to gain some kind of autonomy. It is daily work, over many years.

Who is part of this association, although they may not be present today, during this interview?

Our President, the neurologist, José Bueno, isn’t here today, but Teresa Cabrera, the legal manager of the entity and Carla Cabrera, the Technical Director, are present. When did this association start?

We, the families, saw, in 2019, that the need for support wasn’t being covered and we started trying to cover it. Therefore, was there nothing like it before?

Before, there was AFFA Lanzarote that tried to cover this shortage on the island and their services worked on the island, in 2011 and 2012, with a project called “Mirando por ti”. They had small units that used to provide four hours of service.

And, what is the difference with the new association, regarding the services, compared to the Association from Lanzarote?

In essence, there are no differences, because we look after the same type of patients, although most of them suffer from Alzheimer, there are other types of pathologies. The main goal is to ensure they remain as independent as possible.

How does the association work, with volunteers orpermanent staff?

Carla.- We started with the volunteers who wanted to create the association and thanks to the subsidies we were receiving, we managed to grow with professional technical staff. At present, there are 19 technicians in the team, and most of them work at patients’ homes with 50-minute sessions, which is the patients’ estimated continued attention time. They work differently depending on each case, with individualised sessions.

We now look after about 100 people, and as Teresa was saying, they suffer from various dementias, such as Alzheimer’s, Parkinson’s, people who had a stroke, etc., to slow down their symptoms. But recently we also got the green light for a new project to work with elderly people, who are autonomous and independent, to promote active and healthy ageing on physical, functional and cognitive levels.

This project is taking place in the Municipality of Betancuria and we look after 15 to 20 people. There is a team of three people, a psychologist, a specialist in geriatrics and a social integrator. They travel to the different centres that the Ayuntamiento has provided us with and they work thanks to a subsidy from the Canarian Government.

We also work all over the island with people suffering from dementia.

Do they work all over the island?

Yes, but in Pájara we can only provide social and emotional support. On the other hand, the team that does home visits works all over the island.

In order to provide more services in Pájara, we need more staff and subsidies, with small centres in that area. A large centre isn’t the appropriate solution, because of how large the municipality is, smaller centres spread all over the municipality would be more useful.

Teresa.- We also rely a lot on the carers, who are mostly women that look after their family members 24 hoursaday.

Indeed, all the workshops that we organise are aimed especially at carers, both professionals and families. They are training and information workshops that are animated by the neurologist José Bueno, to train the carers on how to act, how the disease will evolve, and how and when to medicate, more or less, depending on each individual case and symptoms.

We have two day centres on the island, that are not only for people suffering from Alzheimer’s, but they only offer a total of about 50 spaces.

Society usually falls behind problems, when it comes to ensuring that appropriate care is given depending on the disease. But there is a lack of infrastructures and professionals as well as State subsidies.

Two of those carers we are helping are here today with us: María Luisa Fajardo with her husband, who she looks after, and although he is still young, he is showing signs of this pathology.

What is your opinion about the support you are getting from AFFA?

Mª Luisa.- I don’t get any external help, my daughters replace me when I need to go out, but it isn’t easy to leave him with strangers and even worse for my husband, who is at a stage where he doesn’t realise what is happening yet and doesn’t want to see strangers.

When he naps, I take advantage of that time to go shopping or run errands. My daughters work and I can’t ask them to come over all the time, if it wasn’t for AFFA, I don’t know how we would cope.

Despite that, people tell me that I am always running around like a mad woman, but I can’t do anything about it.