Read the Conversation
EF: You recently held the National Alzheimer's Congress. What were the key takeaways from the event, and why are these events so important?
JR: The National Alzheimer's Congress is held every two years. In this year's edition, we tried to analyze different aspects of the disease. We analyzed how dementia affects people with Down syndrome and people of the LGBT community. There was a special interest in the link between dementia and sexuality and how they affect people from different cultures.
We also tried to analyze the situation around new treatments coming to Europe, particularly Spain, in the coming months. The FDA has approved LEQEMBI, and the European regulator is currently examining this new therapy. We expect that it will be approved in the coming few months.
Should the drug be approved, there are two pathways open to us. Firstly, all neurologists will have a new therapeutic tool for treating people affected by dementia. This new therapy will also motivate and encourage early diagnosis, opening up clinical trials. Secondly, it will be our role as an advocacy group to press the Ministry of Health to incorporate this new therapy into their services and determine their capability to distribute this new treatment to the people. This drug will also open up new perspectives for research from a biological point of view.
EF: Spain is going through a transitional period, both politically and economically. What are the key priorities on your agenda now and in 2024?
JR: We are going through an interesting period, and our current priority is to establish contact with the new ministers that are coming in. These are the health minister and the social rights minister. We need to convince them of the importance of Alzheimer's and dementia. These conditions must be a social and health priority, and putting them on the political agenda is going to be our main priority.
We tried to do it with the last government, but it failed. A change in government has reignited our hope, and our priority will be to put Alzheimer's on the political agenda and analyze the needs of the people affected. We want to do this in collaboration with the government and help them understand the research, health issues, and social issues of the disease. Our work will be focused on how Alzheimer's and dementia affect people, families, and society and what the main measures can be adopted to reduce these effects.
EF: Having the perspective of your work in various regions, how do you assess the level of prevention and early diagnostics in Spain compared to other markets? What are you doing to promote prevention, and how can we improve?
JR: We are currently developing different awareness and educational campaigns. This information is accessible on our website. We have programs addressed to society through our local association. I am not sure of the levels of prevention in Spain right now, but we usually talk about the Mediterranean diet and lifestyle, in which people eat healthy, exercise, and do not smoke. I am optimistic about the levels of prevention and early diagnosis in Spain. We recently conducted a study using a questionnaire with our local associations. More than 11 percent of people affected by Alzheimer's disease are early diagnosed. Eight percent of these people are under 65 years old.
The results of this survey introduced a new way in which we tackle the needs of patients as well as the consequences of Alzheimer's disease. This is the first time in Spain since 2017 that people affected by Alzheimer's disease have their own voice. This is thanks to a working group called PEPA, which is an expert panel of people living with Alzheimer's disease. This is an aspect of prevention and early diagnosis.
EF: How are you working with different stakeholders, and how can we get everyone on the same page?
JR: All stakeholders have the same aim. That aim is to fight against Alzheimer's disease. We have two ways of working to achieve this goal. One of them is our network of active agents that work on early diagnosis. It includes people from all the medical societies in Spain. There are neurologists, psychiatrists, and general practitioners. We offer them the opportunity to collaborate on a common project to analyze Alzheimer's disease from different points of view. This group of professionals is very active in internal working meetings where they share different points of interest. We are currently working on brain health.
We are also fighting Alzheimer's through a synergy with the Spanish Society of Neurology. Our task is to analyze the future of the new treatments and how we can work toward a common goal with the ministries. We will invite relevant actors, such as neurologists, researchers, and medical and social associations, to join us before we lobby the government. The Spanish Confederation of Alzheimer's can promote this kind of network. We have been working on this for the past few years.
We recently had a discussion with the former General Director of the Institute of Social Services and elderly people about the need for a national plan for Alzheimer's. We aimed to convince him to take the necessary steps to design the plan. We want to be a new collaborative agent working at the same level as the rest of the stakeholders involved in tackling Alzheimer's disease.
EF: Looking back at the last 33 years of CEAFA, could you reflect a little bit on remembering how it was at the start and how it is now? How have the treatment and the lives of people who suffer from Alzheimer's evolved during this time?
JR: There was nothing to offer people affected by Alzheimer's disease thirty years ago. This is why the first associations were created. The health system had no answers to offer people suffering from this disease. Thirty years ago, people relied on the association and the support they could give to their relatives. They traveled to other countries in search of answers and brought back nonpharmacological therapies, such as cognitive stimulation. In the framework of the associations, people affected by Alzheimer's started to receive support through non-pharmacological therapies.
Today, all associations have psychologists, social workers, and all other kinds of professionals who can offer this kind of therapy. Alzheimer's patients now receive good social support. We are now working with the Alzheimer's Reference Center in Spain, which depends on the Social Rights Ministry, to validate the scientific methodology of different nonpharmacological therapies. If we are able to demonstrate the evidence of those therapies, we will be in a position to approach the Health Ministry to incorporate those therapies into the system so that they will be available for all people who may need them.
All associations and public and private centers must be prepared and adapted to offer those therapies correctly. The quality of the support and the services that we will be able to offer in the future will be better than the quality we offer now. We do all this with Alzheimer's patients and their families in mind. We will increase our synergy with the reference center, and once we finish this project, we will work with other people. We hope to develop new therapies on the social and health ends that will be complementary to the new treatments that will be available on the market in the next month.
EF: Is there anything that we didn't ask you about or any final message you would like to give to our readers as part of the report?
JR: We are going to keep working on trying to establish and consolidate new networks and synergies. We will continue to position our confederation as an agent for progress. We will combine our professional aspect with the voluntary aspect so that the familiar point of view is combined with the technical point of view. We have a good balance between those, and this is why we are in a position to offer and share expert knowledge and experiences working with people affected by Alzheimer's disease. The association is in direct contact with people affected by Alzheimer's, and we are best positioned to know their needs and what can be done to solve them. We will continue to work in collaboration with public and private stakeholders.
