José Bueno: “The more we care for carers, the better care people with Alzheimer’s will receive”

Those who care matter too

Care for those who look after others is the focus of the fifth edition of the “Those who care matter too” programme, organised by the Fuerteventura Association of Families Living with Alzheimer’s (AFA).

The initiative began on 21 September, coinciding with World Alzheimer’s Day, and will run until early October, with activities in Puerto del Rosario, La Oliva and Pájara. Its aim is to raise awareness of the disease and of the work the Fuerteventura-based association carries out on the island.

Neurologist José Bueno highlights the impact the disease also has on families, particularly on the women who take on most of the caring responsibilities.

“People often overlook those who are on the front line from the very beginning: the carers,” he said. Although attention tends to focus on the person diagnosed, he warned that those supporting them are also affected. His view is clear: “The more we care for carers, the better care the patient with Alzheimer’s, or any other form of dementia, will receive.”

Bueno questions the figures

Asked about the impact of Alzheimer’s on society in the Canary Islands, he said around 6,000 people are reported to have been diagnosed with Alzheimer’s in the archipelago, although he believes the figure may be an underestimate. “That figure is far too low, in my view,” he said.

He explained that an estimated 10% of people over 65 may have some form of dementia. He also noted that more cases are now being diagnosed, both at mild and advanced stages, as public concern grows about memory problems, language difficulties and other cognitive changes.

Even so, some people remain undiagnosed.

In some cases, cognitive decline goes unnoticed while people remain in their usual surroundings and becomes more apparent when they are admitted to hospital, suffer a fracture or face another major change to their routine.

New medicines, but still no cure

Advances are making it possible to diagnose the disease earlier and more accurately by testing for certain related markers, “such as tau and amyloid proteins”. These tests can be carried out using cerebrospinal fluid or specific imaging studies, although Bueno distinguished between their use in research and their gradual introduction into clinical practice.

The neurologist stressed that these tests are not generally indicated for everyone who fears developing Alzheimer’s or has subjective memory complaints.

He also clarified that in the vast majority of cases the disease is not hereditary, although some families have genetic changes that can increase the likelihood of developing it.

José Bueno also wanted to make clear that, despite the announcements, new drugs for Alzheimer’s, also approved by the European Agency, target the build-up of toxic substances in neurons and may help slow the disease in patients at a very mild stage. However, he insisted that they do not cure it.

“Indeed, they slow the disease to some extent. There is no cure,” he stated categorically.

These treatments, based on monoclonal antibodies, are also expensive, can cause adverse effects and are intended for very specific patient profiles. “These treatments are not suitable for everyone,” he warned.

Bueno said efforts are under way to secure public funding because these medicines may represent “a hope, but not a cure-all”.

Patient selection must take into account both how far the disease has progressed and whether there are factors that could increase the risks of treatment.

The best treatment is self-care

While diagnosis and research continue to advance, the neurologist advocated self-care as the main tool for prevention.

He recommended controlling high blood pressure and diabetes, avoiding tobacco and alcohol, staying physically and mentally active and, of course, sleeping well.

He also stressed the importance of stimulating different areas of the brain through activities such as learning languages, playing an instrument or taking part in music-based therapies.

Fuerteventura has fewer care resources

The specialist called for Fuerteventura to have a care network able to respond to the different stages of the disease.

In the early stages, families need information, guidance, support and stimulation. “That’s what we do at AFFA,” he said.

But as the condition progresses, needs increase and residential care may be required.

“Unfortunately, many people, even when their carers want to keep looking after them, will end up needing a care facility because the disease progresses and circumstances become very difficult,” he explained.

A facility of that kind, he lamented, “we don’t have in Fuerteventura”.

Bueno said the shortage of resources was not solely down to the difference between the main islands and the smaller ones. Having compared Fuerteventura’s situation with that of other territories, he said that “all of them have far more resources than Fuerteventura”.

He recalled that when he became AFFA president, La Graciosa had a day centre while Fuerteventura had none.

Since then, he acknowledged, steps have been taken, services have been developed and awareness has grown of the need to support people living on the island.

“Every day, people think of Fuerteventura more as an island where people can receive care, not just a place to come on holiday,” he said.

AFFA’s events come to the north and south of Fuerteventura

AFFA’s fifth edition aims to strengthen that awareness and bring activities to different parts of the island. Bueno highlighted the importance of going to where families are, as many carers cannot travel or have no one to look after their relative while they are away.

“We have to go to where the carers are,” he insisted, highlighting the reach of AFFA’s support for families, including those in the north and south of the island.

The programme explores the disease from different perspectives, with screenings, talks and opportunities for discussion. It also focuses on the role of migrant women in care work.

The aim, he concluded, is to raise awareness of Alzheimer’s, its different stages and the needs of those who have it and those who support them. “If you don’t care for both, this won’t work,” he concluded.