Alzheimer's: beyond the diagnosis

Probably yesterday, Domènec Balsells remembered that it was World Alzheimer's Day. He was diagnosed with the disease at 59 years old. Now he is 78 and, since May 2021, he has been attending the Espai Dreta de l'Eixample two days a week, one of the 23 spaces that the Catalunya La Pedrera Foundation has distributed throughout Catalonia, where it supports people like Domènec through the Memory Reinforcement program.

“I love that they make me think. Every day we review what World Day it is and I find it very curious, just like now, when we see strange names of Spanish towns,” he explains. This week, organizations, caregivers, affected people, and healthcare professionals are joining forces to continue giving visibility to a disease that, in Catalonia, affects one in every ten people over 65 years old. Like Domènec.

For Domènec, the diagnosis was a major upheaval. It was hard for him to talk about it and to acknowledge that he had Alzheimer's: “The word is very big and hard to say.” Over the years, however, his way of experiencing the disease has changed: “As you can see, now I speak about it with total naturalness.” He considers it important to be able to talk about it openly and explains that living with it has also made him less inhibited.

His story is, probably, like that of many other people who go through the same situation. Not all of them, however, start having symptoms only at an advanced age. Domènec is one such case and he still remembers how, after working for 33 years in a bank keeping the accounts, “I was forced to leave it”. Both he and his colleagues began to detect that something was not right when the cash box did not balance. After undergoing various medical tests, the diagnosis arrived.

He has been participating for a little over five years in the Memory Reinforcement Program promoted by the Fundació Catalunya La Pedrera and “during this time thanks to the program, not only have I maintained myself, but I have improved!”. Domènec is a very active and positive man and feels great admiration for the team of professionals —whom he affectionately calls “the teachers”— who have been treating him since then. “They are wonderful and they know a lot”.

The objective of the FCLP Memory Reinforcement program is to improve the quality of life and well-being of elderly people with mild and moderate cognitive impairment (due to Alzheimer's disease and other dementias). The Foundation focuses on the initial stages of the disease, when the person has just received the diagnosis or when they do not have a diagnosis but have subjective complaints of memory loss.

13 years of experience

The program supports these individuals to maintain their capabilities and autonomy for as long as possible. With 13 years of experience, the Foundation has assisted more than 25,000 people in the early stages of this disease and their families. Currently, there are 3,000 people, with an accumulated total of more than 4,000 different participants throughout the year, across the 23 spaces it has throughout Catalonia. The program offers personalized and effective treatment to maintain their physical and cognitive capabilities, stimulating memory, working to improve physical and emotional condition, and enhancing socialization and relationships of support and friendship.

It is a non-pharmacological therapy, a health resource supported by 31 Catalan hospitals and 124 Primary Care Centers (CAPs), fully compatible and complementary to pharmacological therapies.

The program applies a methodology based on Person-Centered Care, which recognizes each participant as an active person, with a life story, interests, capabilities, and their own voice, and has a team of 200 experts in dementia, including psychologists and neuropsychologists, physiotherapists, creative and expressive activity technicians, and coordinators.

In a context where more than 9,700 new cases of Alzheimer's are detected every year, the work of the Catalunya La Pedrera Foundation offers a support program at a key moment: in the early stages, when the person has just received the diagnosis and often feels scared and lost. It is also a vital moment to work on maintaining the capabilities they still have.

“I am a patient and a caregiver”

But what happens when life takes a turn and someone suffering from Alzheimer's has to live with another patient also with Alzheimer's? Teresa Cardona, 81, is the wife of Domènec Balcells, and has also been diagnosed with Alzheimer's for 3 years. This story is unfortunately not exceptional. It is repeated often in many families. Everyone, surely, knows some case.

In Teresa's case, the disease has evolved more rapidly than in Domènec's and “I don't remember anything anymore and I can't do anything alone, not cook, not get dressed... nothing”. That is why “I am a patient and a caregiver, and I am happy to be able to be by my wife's side, who has always looked after me. Now it is my turn”, says Domènec, who cannot help but get emotional when explaining it. Teresa had been a nurse specialized in dialysis and a very active person.

Both now go together two days a week to the Espai Dreta de l'Eixample of the Fundació Catalunya La Pedrera. Domènec explains that the rest of the week are “days for her”: going shopping, medical visits and everything that Teresa needs.

The day-to-day in the space is like being at home. “When you enter and see the atmosphere, that's it, you know you will be well there”. The relationship with the companions is also comforting. But right now, he explains, what matters most to him is continuing to preserve his capabilities to be able to take care of Teresa. The activities of the FCLP's Memory Reinforcement Program help him to stay on his toes.

Check more information about the Memory Reinforcement Program of the Fundació Catalunya La Pedrera and find your nearest space at fundaciocatalunyalapedrera.cat