Following the success of the Soy Cappaz application, Fundación MAPFRE and the Gmp Foundation now present a new app, Brain Damage, which supports families affected by acquired brain damage (ABD), enabling them to apply from a cell phone for the resources and grants available in each Spanish region.
TEXT: ÁNGEL MARTOS IMAGES: ISTOCK, FUNDACION MAPFRE
The actress Andrea del Rio is one of the most popular faces on Spanish television thanks to her starring role as inspector Alicia Ocaña in the Servir y Proteger [Serve and Protect] police series on TVE. However, in her family life, she feels more like a “secondary character”, at least since her mother Isabel, a social worker, suffered a stroke five years ago, when she was living in Zaragoza. A cerebral infarction is one of the causes of what has been called acquired brain damage (ABD), a group of injuries that affect the cognitive, emotional, behavioral and/or physical performance of individuals. Some victims of industrial or traffic accidents also suffer ABD.
“They took her to the doctor, but, at that moment, they didn’t realize that it was a stroke and they sent her back home… The next morning she woke up with her cognitive skills really mangled,” Andrea recalls in a video testimony – published on the Spanish Platform for Acquired Brain Damage’s YouTube channel – of those first few hours that changed the life of her mother and the whole family. At that time, the verbs in the title of her series, serve and protect, also came to form part of her daily routine. “It’s a good comparison,” the actress recognizes. “It’s a really tough road, laden with so many feelings to contend with… A constant, tremendous struggle for the patient, indeed, but the caregiver is the one who is always there, who provides company throughout this lengthy process and, of course, has to “serve and protect”.
Today, as Andrea herself describes it, the lives of both of them are “more stable”, following the initial shock of being faced with a highly complex situation, given the range of limitations involved. “89 percent of these people suffer some debilitation that hinders basic activities of everyday life, a percentage which falls when they receive assistance, be it technical or personal,” according to the Report on Resources for Attending to Brain Damage Patients in Spain (2019), drafted by the Spanish Brain Damage Federation (FEDACE) and the Brain Damage Observatory. But, how can you access this help, often dispersed among different administrations, or when you are simply unaware of its existence? And, even worse, how can you deal with the myriad of paperwork needed to apply for it in the midst of this pandemic, when going to any physical counter becomes a hazardous situation?
Fundación MAPFRE and the Gmp Foundation came up with the answer in the form of a mobile app: Brain Damage App. “The needs of a relative with ABD tend to be wide-ranging, multidisciplinary and costly; moreover, no time should be lost before possible solutions are implemented,” explains Francisco Fernández, director of the Gmp Foundation. “Families require specialist guidance, such as that which can be provided by a qualified professional with profound knowledge of the resources available and the steps that must be taken.” This knowledge is now available to anyone who may need it, as they simply have to download an app on their cell phone.
ABD not only affects the patient, but also all those around them and, more specifically, those who have to adopt the role of caregivers, as was the case for Andrea del Rio. On many occasions, caregivers (generally speaking female, as we will now see) have to relegate or completely abandon their occupations, dedicating almost all their time to assisting the person with ABD. In Spain, moreover, this reality mostly affects one sex. The fact is that, according to the Study on the Degree of Knowledge of Acquired Brain Damage among the Spanish Public, conducted by the international consultancy GfK and the Gmp Foundation in 2018, “77 percent of those caring for people with ABD in Spain are women.”
“A large number of grants are available for improving the physical and psychological situation – as well as for the rehabilitation – of people with brain damage, once the pathology is diagnosed,” underscores Antonio Guzmán, Health Promotion manager at Fundación MAPFRE. The sequelae produced by ABD call for a variety of resources, ranging, at first, from medical and rehabilitation treatments to others, over the following years, such as social assistance and measures for inclusion in the community. However, as Guzman acknowledges, “such aid, especially economic grants, varies from one region to another.” The Brain Damage app faced the challenge of centralizing all that information in a nationwide mobile application capable of providing a comprehensive response from any geographical location. In this regard, another study by the FEDACE, entitled precisely “Territorial Inequalities in Attending to Brain Damage Patients in Spain”, notes in general terms “an absence of comprehensive public policies for dealing with ABD victims” (except in the Valencian region).
The same study also denounces “the shortage of specialized resources” and highlights “the role adopted by associations attempting to meet the needs of people with ABD and their families, as regards adequate attention.” The Brain Damage App was thus created as a way to optimize all available resources, both public and private, for each specific case, taking into account the type of injury, the geographic location and age of the patient, among other factors. “The application utilizes the inventory of resources on the FEDACE website, which is updated regularly to ensure people with ABD and their families have access to reliable information that is essential for them,” explains Francisco Fernández. According to Antonio Guzmán, this is what makes the Brain Damage app “a living application.” This tool also benefited from the collaboration of the technology firm MO2O and the Polibea Foundation. If the COVID vaccine will put an end to the pandemic and digitization will pull us out of the economic crisis, this mobile application is surely the perfect “digital vaccine” for helping families affected by ABD.
100,000 cases of ABD each year
According to the Spanish Brain Damage Federation, over one hundred thousand cases of acquired brain damage are recorded annually in Spain, a shocking figure that does not receive enough attention. It is highly likely that those who suffered it in the past have completed their quest for information, resources and application forms. As a result, the Brain Damage App primarily targets those recently affected or who may be affected in the future, as well as their families. After their initial stay and discharge from hospital, they will need a reliable guide in this quest, walking them through the steps needed to achieve the best resources available and facilitate any formality. The Brain Damage App was presented on October 26, coinciding with Spain’s National Day dedicated to this disorder. In this brief period of time, it has already achieved two thousand downloads on both Android and iOS cell phones. “In absolute terms, this is not a highly significant impact; however, it must be borne in mind that this is an application solely accessed in the event of having suffered an unexpected case of brain damage,” Francisco Fernández adds. “It is our hope that it is needed by the fewest number of families possible.”
Would it be possible to replicate this kind of application for other health afflictions? And in other international contexts? The answer to both questions would appear to be affirmative. Within a few days of presenting the app, the Gmp Foundation and Fundación MAPFRE received expressions of interest from organizations working with other disorders, such as, for example, Alzheimer’s Disease. And also from organizations caring for patients with acquired brain damage in Latin American countries. “We have been invited to participate this coming year, for example, in an international congress in Puerto Rico to explain exactly how it works,” Antonio Guzmán tells us. “What both our foundations are clear about is that we will freely offer all our accumulated knowledge and learning without reservations, placing them at the service of any initiative striving to improve people’s lives,” explains Francisco Fernández.
Sometimes it is hard to view the present and the future with optimism. Not so for Andrea del Rio, perhaps “because we’ve come through such tough times that I honestly believe everything that happens and can happen will be better and more positive,” she confessed in her YouTube interview. Etched in her memory is that feeling of being lost “and with so little help that you don’t know where to start…,” she admitted in an email to our magazine La Fundación. Likewise, “how hard it was to do and achieve absolutely everything, the scant means she had and the tremendous misinformation.” That is why, when the actress from Servir y proteger learned of the existence of the Brain Damage app, she could not avoid images of that past life that could have been much easier for so many people. Now it is a dream come true.