The Community of Madrid has begun work on the construction of the new Specialized Day Care Center for Amyotrophic Lateral Sclerosis (ALS), which will be located in pavilion 1 of the Isabel Zendal Nursing Hospital in the capital, with the expectation that it will begin operating. this coming month of April.
The regional Executive has invested 1.2 million euros to refurbish this center, with capacity for about 60 patients, although it can easily be expanded due to the modular nature of the facilities.
It will be the first of its kind in all of Spain and will cover the daily needs of those affected by this disease and their caregivers, while offering specialized outpatient services, as highlighted by the regional government. In the Community of Madrid there are currently about 600 cases of ALS, and at the national level, around 4,500.
Its portfolio of services includes medical, nursing and psychological care, Physiotherapy, Speech Therapy and Occupational Therapy and its facilities “will take maximum care of the care and comfort of the sick.”
It will also have an assisted dining service, a gym and a bank of technical aids, such as adapted tablets or canes with the possibility of loan for patients. All of this with the aim of maintaining the best possible level of personal autonomy and facilitating respite and work-life balance for caregivers.
Likewise, it will provide the necessary training to these main caregivers, family members and professionals in the use of support devices and management of clinical supports that replace the loss of function, such as respirators, gastrostomies, aspiration of secretions or cough assistants.
In this sense, work is being done on an area of ??1,400 square meters on which a reception and administration area, Physiotherapy and Occupational Therapy rooms, consultations, day hospital, gym, family area, dining room and the bank are being built. technical aids, among others.
Once completed, it will be integrated into the future ELA NETWORK, made up of the five hospital units in the region (distributed between the 12 de Octubre, Clínico San Carlos, La Paz, Infanta Elena de Valdemoro and Rey Juan Carlos de Móstoles hospitals), as well as as well as the future Puerta Hierro Residential Health Center, which will become the first in the world of its kind for this pathology.
To develop these projects, the regional government has counted on ALS experts from different professional categories and affected people, through different entities and patient associations.
This construction is being undertaken from a humanization approach, designed to provide patients with ALS with a safe, accessible, comfortable environment that is also adapted to their needs, taking into account that the perception of an adequate environment has calming and even therapeutic effects. .
For this reason, this work includes aspects such as acoustic and sensory comfort (adequate lighting, privacy or views with natural elements) and an inclusive design for all people, with open and spacious spaces, as well as fully accessible.
Amyotrophic Lateral Sclerosis (ALS) is a degenerative disease of the central nervous system, which affects the neurons that control the movement of voluntary muscles. The involvement occurs at different levels: cerebral cortex, brain stem and spinal cord. The consequence is muscle weakness that progresses to paralysis, affecting different regions of the body progressively.
According to data from the Spanish Society of Neurology (SEN), every year in Spain about 700 people begin to develop symptoms of this disease. Since the onset of the disease, half of people with ALS die in less than three years, 80% in less than 5 years, and the majority (95%) in less than 10 years. This high mortality means that currently only about 3,000-4,000 people suffer from the disease in Spain, despite it being the third most common neurodegenerative disease, after Alzheimer’s and Parkinson’s.
The causes of this disease are still unknown. Although a small percentage of ALS cases have a familial origin (between 5 and 10% of cases), in the vast majority of cases a multifactorial origin is assumed, without all the risk factors having been completely clarified. .
Clinically, ALS is characterized by muscle weakness that progresses to paralysis, affecting the ability to move autonomously, oral communication, swallowing and breathing, although the senses, intellect and eye muscles remain intact. Affected people progressively need more help until they reach complete dependence.
Currently there are no curative treatments for ALS, although some of the accompanying symptoms such as cramps and spasticity, among others, can be cured. Since the only approved drug treatment for this disease has a relatively modest effect, ALS generates a great deal of disability.
In this way, for adequate care of affected people, it is necessary to carry out a comprehensive approach by a multidisciplinary team that ranges from symptom control, nutrition, respiratory support, to psychological and social support in the patient’s environment and their surroundings. caregivers.
