Alzheimer’s is a major neurodegenerative disease that affects all of us, those who suffer from the disease, their families, those without a diagnosis and society as a whole. The document “The Pact for Memory” calls for facilitating access to early diagnosis, carrying out a census of patients and guaranteeing equal access to treatment.
“The Pact for Memory” is a document prepared by the Spanish Confederation of Alzheimer’s and Other Dementias (CEAFA) with the aim of achieving a demand immediate action let’s let them be a starting point to carry on the real fight against this disease.
The reason is the approach to Alzheimer’s requires effective, firm and definitive solutions which have the consensus of all, the support of health, scientific, professional and social institutions and the determined commitment of political representatives.
Some of the member scientific societies are the Spanish Society of Psychogeriatrics (SEPG), Spanish Society of Neurology (SEN), Foundation Center for Research on Neurological Diseases (CIEN), Spanish Society of Geriatrics and Gerontology (SEGG), Spanish Society of General Practitioners (SEMERGEN), Society of Doctors General and Family (SEMG) and Spanish Society of Psychiatry and Mental Health (SEPSM).
At EFESalud we talk to Marilo Almagro, the president of CEAFA on the importance of early diagnosis.
“At this moment, early diagnosis allows us to live our life, organise it, decide and know what we want and how we can act. There are also non-pharmacological treatments that slow down the process and if we don’t know the diagnosis we can’t use them”, indicates the president.
Alzheimer’s
According to the document, Alzheimer’s has become one of the most widespread neurodegenerative diseases in Spain, affecting more than 1,200,000 people, representing between 60% and 70% of dementia cases; and indirectly to 5 million family members.
This disease affects one in ten people over the age of 65 and a third of those over the age of 85.
By 2050, it is estimated that Alzheimer’s cases will increase by 66%, reaching 3.6 million people affected in Spain.
Furthermore, late diagnoses usually delay access to treatment by 18 months, from when the first symptoms appear.
Furthermore, the document states, the lack of tools for early diagnosis, the few specialized centers and the poor coordination between primary care and hospital care make it difficult to deal with the disease, leaving many patients off the healthcare radar.
One of the problems these people have is social isolation because they are cared for 24 hours a day, 7 days a week.
He points out that the law on personal autonomy and assistance for dependent persons is currently being amended and underlines that, in his opinion, health workers should also be included in this law.
He adds that the 315 associations that make up the Spanish Confederation offer help to those who care for these people.
«We take care not only of the sick, but also of the caregivers, giving them individual and group psychological support, mutual aid groups, training so that not everyone knows how to take care, but starting to take care of themselves», says the president.
Furthermore, the majority are women who abandon their personal and professional lives to take care of themselves and whose work could represent 3% of GDP with a cost of around 32,000 euros per family.
Mariló Almagro underlines that it is necessary to make policies so that women can continue to work or offer support to those who do not work.
“Right now there are assistance policies, but they are not up to par. We are talking above all about minors and we must also give the necessary value to care for the elderly. At the moment there is no politics because Alzheimer’s is not on the Spanish political agenda and this is a problem”, explains the president.
CEAFA calls in the document for immediate measures to address the Alzheimer’s situation.
“We don’t know how many people with dementia are affected. The Spanish Society of Neurology states that between 30 and 40% of people do not have a diagnosis. This census would help us to act and make an adequate policy for all these people and their families”, defends Almagro.
An early diagnosis to identify the disease in the initial stages and be able to intervene as soon as possible in its development, establishing a coordinated and efficient diagnostic path between Primary Care and Hospital Care to facilitate the process and with the provision of the necessary economic, material and human resources.
“From the time the patient first visits, it can take 2 or 3 years to receive a diagnosis. There are also several ministries that are not coordinated and this is not an exclusively health disease, but above all a social one”, underlines Almagro.
THE neck calls for equal access to pharmacological, non-pharmacological and healthcare treatments.
The president explains that the lack of coordination between primary and hospital care can affect the delay in diagnosis, thus losing time for non-pharmacological and pharmacological therapies.
These are the three measures requested in the document “The Pact for Memory”, but President Mariló Almagro reveals that they are not the only ones they have in mind.
“These three measures are the priorities today, because we have a National Plan 2019-2013 in which nothing has been done. These are the first measures that we propose but others will follow and we will add them because what we want is that it does not remain in 3 measures, but that there is a state pact regardless of the party that governs and that dementia becomes a priority, and it is what it is,” underlines the president.
What are the key goals of “The Pact for Memory” in addressing Alzheimer’s care in Spain?
Time.news Interview: Unpacking “The Pact for Memory” with Mariló Almagro
Interviewer (Time.news editor): Welcome, Mariló Almagro, president of the Spanish Confederation of Alzheimer’s and Other Dementias (CEAFA). It’s a pleasure to have you with us today to discuss the important initiatives surrounding Alzheimer’s care in Spain, particularly “The Pact for Memory.” Can you give us an overview of what this document entails and its primary objectives?
Mariló Almagro: Thank you for having me. “The Pact for Memory” is a crucial call to action aimed at tackling Alzheimer’s disease, which affects over 1.2 million people in Spain alone, along with millions of family members. The document emphasizes the need for accessible early diagnosis, a comprehensive census of patients, and equal access to treatment across the board. It serves as a foundation for mobilizing a concerted effort from health, scientific, and political sectors for effective solutions.
Interviewer: You mentioned early diagnosis—why is that so critical for Alzheimer’s patients and their families?
Mariló Almagro: Early diagnosis is essential because it empowers individuals and their families to plan their futures, make informed decisions, and explore non-pharmacological treatments that can slow the progression of the disease. Unfortunately, many patients aren’t diagnosed until significant delays occur—often up to 18 months after symptoms first appear—which can severely impact their quality of life and the support they can receive.
Interviewer: That’s a significant delay. What barriers do you believe contribute to these late diagnoses?
Mariló Almagro: A major issue is the lack of accessible diagnostic tools, insufficient specialized centers, and an inadequate coordination between primary and hospital care. These gaps mean many individuals slip through the cracks of our healthcare system and remain undiagnosed or without support.
Interviewer: Social isolation must compound those challenges for individuals living with Alzheimer’s. How is CEAFA addressing this critical issue for caregivers and patients?
Mariló Almagro: Absolutely, social isolation is a significant concern. Many caregivers are dedicated 24/7, which can lead to their own psychological and emotional strain. CEAFA supports caregivers through various programs, including individual and group psychological support, training sessions, and mutual aid groups. We understand that caring for caregivers is equally important to ensuring the wellbeing of patients.
Interviewer: It sounds like the responsibilities disproportionately fall on women in these caregiving roles. Could you elaborate on that aspect and how it impacts families?
Mariló Almagro: Indeed, the majority of caregivers are women who often sacrifice their careers and personal lives. Their unpaid labour could represent approximately 3% of Spain’s GDP, costing families around €32,000 annually. We need to implement policies that support these women, enabling them to balance work and caregiving. Right now, assistance policies are mainly focused on minors, while the care for the elderly is largely overlooked.
Interviewer: It appears that there’s a pressing need for Alzheimer’s to be prioritized on the political agenda in Spain. How do you see CEAFA’s role in pushing for that change?
Mariló Almagro: CEAFA plays a vital role in advocating for Alzheimer’s and aims to ensure that the voices of those affected are heard. We demand immediate measures for addressing the current situation, including the establishment of a census to understand the true scale of dementia in our country. Right now, it’s estimated that 30-40% of people with dementia remain undiagnosed, which complicates policy making and resource allocation.
Interviewer: What immediate actions do you believe should be taken to advance the goals outlined in “The Pact for Memory”?
Mariló Almagro: First and foremost, we need better resources for early diagnosis and treatment, alongside a national awareness campaign to educate the public and healthcare professionals about Alzheimer’s. Most importantly, we require a collaborative effort between health authorities, scientists, and politicians to create a supportive framework that can improve the lives of both patients and caregivers. The time for action is now.
Interviewer: Thank you, Mariló, for sharing your insights and the critical work that CEAFA is doing to support those impacted by Alzheimer’s. We hope to see positive changes soon.
Mariló Almagro: Thank you for bringing attention to this pressing issue. Together, we can make a difference.