Too young to enter a residence

BarcelonaA Early-onset Alzheimer's, diagnosed at 58 years old, has brought Lluís and his family to an unsustainable situation. In the last two months, the cognitive deterioration of the illness has accelerated so much that caring for him at home is increasingly complicated, but, for the moment, admission to a geriatric residence is not a feasible or quick solution. When the family began the procedures to obtain a place, they hit an unexpected bureaucratic wall: current regulations limit geriatric residences for those over 65 years old, and Lluís is 64 years and nine months old. Therefore, until October he will not be able to opt for a place through the ordinary route, nor can he enter waiting lists. He is too young for a residence.

The only option left for them is admission through the exceptionality route, which provides a place for those under 65 if they meet social and health needs criteria. The family understands that their case fits this because Lluís is a person with recognized total dependency and the his main caregiver, his wife, she feels physically and emotionally overwhelmed. Rosa Poy explains it, moved: "I didn't see it, I didn't want to see it, and now that he is admitted I have realized that I am exhausted, I need to rest.

Following the diagnosis, Lluís had to leave his job as a teacher and found it very difficult to explain his illness. Out of respect for his way of doing things, this text does not identify him by his surname. However, despite being aware that his case is not common, the family has wanted to make it public to ask for more "empathy and flexibility" in the response, indicates his daughter Lúa, who underlines the "paradox" that a "defender and servant of public school is neglected by public services". A spirit that led him to participate in a clinical trial.

Lúa explains the "ordeal" the family had to go through to get a place in the residence: the granting of total disability and the recognition and review of the degree of dependency and disability. One day, they invited him not to return to the day center because his need to constantly wander interfered with the operation of the service and affected the other users. The professionals recommended a residence for Lluís's well-being and that of his caregiver, who had a little respite during those hours. Once again, however, she had to dedicate herself to it body and soul. "I haven't had a life for two years, always behind him," she states.

Accepting the residential option was a "very difficult decision", but the family little thought that it would not be a done deal, but rather that they would have to battle between little information or ignorance of their case even from specialized services, zero support, and loneliness. In principle, the idea was admission "for a few weeks, a month" in a private center. From all the geriatric centers they received a no for an answer and they spoke to them about "exceptionality".

At the same time, they were also told that Lluís could not be admitted because he has a family that takes care of him and is not helpless. Finally, a private residence accepted him, but made it clear that "his continuity would depend on how he adapted to living with the other residents". He was not there for even 24 hours, because after a fall he had to be admitted to a hospital, and the management already communicated that he could not stay there.

The hope of socio-sanitary care

The unknown factor that worries the family is knowing what will happen when Lluís is discharged. "In the last interview with the social worker, she gave us a little hope, but that doesn't stop us from having to jump through hoops for everything," says Lúa, who summarizes the situation: "The illness is faster than the administration." When he turns 65 in October, he will enter a residence, although if ordinary channels are followed, the process to obtain a public place can take two to three yearspublic place.

The Department of Social Rights and Inclusion admits they are "aware" that there are specific situations that affect people's behavior and can alter coexistence levels. The same sources indicate that the integration of the social and health system, which has already begun with a pilot plan in Vic and is to be rolled out across Catalonia in 2027, and the reform of the social services portfolio – the catalog of public services and benefits – "must help in addressing cases like this".