The School for Caregivers of Patients with Amyotrophic Lateral Sclerosis (ALS) has been inaugurated this Saturday at Nurse Isabel Zendal Hospital, a highly demanded initiative by patients and families, where healthcare professionals will provide theoretical and practical training on the most appropriate care for individuals suffering from this condition at home.
The Minister of Health, Fátima Matute, attended the first session at the Specialized Day Care Center for ALS (CEADELA), where she praised the work of caregivers and families, whom she considers an «example of commitment, dedication, and empathy.»
«Your experiences allow us to better understand the reality of this disease. That is why the implementation of schools like the one we are inaugurating today is essential, as all help is needed to make life easier for those with ALS and those who provide daily care,» Matute emphasized.
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This Saturday, attendees had the opportunity to learn more about communication systems for those affected, with demonstrations of available technological resources, explained by speech therapists and with the collaboration of an ALS user, as stated in a press release by the Community of Madrid.
This measure aims to provide useful guidelines for managing these patients at home, reducing the anxiety generated by their situation and the negative outlook on the progression. Another objective is to promote the emotional well-being of those who care for them.
The School will host five more sessions, on a quarterly basis, combining theory and practice, with classes led by professionals of different categories.
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These classes will include simulations to enhance caregivers’ skills and prepare them to respond to various situations, as well as individual tutorials to address any doubts.
Attendees will have access to educational materials and supplementary resources, such as guides and videos, to reinforce their learning.
Furthermore, evaluations will be conducted to measure the participants’ progress, while support groups and discussion forums will be established to share experiences, advice, and emotional support.
In addition to communication systems, topics such as patient mobilization, respiratory care, nutrition, self-care for patients, and social aspects will be addressed.
This initiative, which has received collaboration from the Spanish Association of ALS Patients (ADELA), is a new measure by the Community of Madrid to simplify the daily lives of those with ALS.
With the same goal, the regional government pioneered the establishment of a Day Care Center for this disease in April 2024, at Zendal, which has served over 120 users in its initial months of operation.
This facility is part of the ALS Network, along with public hospitals 12 de Octubre, Clínico San Carlos, La Paz, and Gregorio Marañón in the capital; Rey Juan Carlos in Móstoles, and Infanta Elena in Valdemoro, currently caring for 700 individuals.
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Next summer, Santa Cristina will join them with the addition of a new Medium Stay Unit for individuals with ALS.
The specific hospital-residential resource that the regional government will build at the former Puerta de Hierro public complex will also be incorporated, with works starting this year and an investment of 80 million euros.
The future complex, spanning approximately 27,000 square meters, will feature 190 beds, with 50 allocated for long-term ALS cases, 120 for those requiring functional recovery, and 20 for palliative care patients. EFExh
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