How do you take on this new challenge at the head of the Asociación Alzhéimer Canarias?
My relationship with the Association dates from the moment it was born, since I was part of its foundation 26 years ago, and now that I have no other commitments, I did not hesitate to accept when the position was proposed to me. I begin this new stage by assessing the current situation, especially from the point of view of what the pandemic has meant and the application by the Government of the Canary Islands of the Dependency Law and how that can facilitate and favor care for some people tremendously dependent, which are dementia sufferers, be it Alzheimer’s or any other. And there is another priority of which I am particularly sensitive, which are the caregivers, although the caregivers should be said because they are mostly women, who also require support, support, information, because no one has prepared you for this. In many cases the caregivers are people who are abandoned, left by the hand of God and often the systems care for the sick person but the caregiver does not pay attention.
What plans do you have to improve the caregiver’s situation?
From the Association we were always careful with the caregivers, we always had the vision that they had to be helped, and I would like, once this pandemic situation passes, to return again to the self-help groups, to a whole series of works in where the caregiver is not alone and, in some situations, abandoned.
“There is still an abuse of the administration with third sector organizations”
How does the pandemic affect Alzheimer’s patients and their caregivers?
Fortunately we have not had cases of Covid, neither in the residents who are 26, nor among the staff, an exhaustive control has been carried out. The Alzheimer’s Center currently has more than one hundred professionals working to care for the sick and their families, from psychologists, nurses, social workers, assistants, cooks, technicians … In this non-profit organization that belongs to the third sector, that is very poorly attended by public administrations, we continue to carry out with great effort, a work that is fundamentally based on professionals.
And the services that had been provided by the Canary Alzheimer Association?
The care for the people who are in the residence has not been diminished, but it is true that the pandemic has been frankly hard for the rest of the patients and their families. By having to close the day centers at the instruction of the Government, once again isolating themselves in their homes has caused the patients to suffer a progressive deterioration, and the relatives tell us this. In day centers they have been working for a long time with stimulation techniques of all kinds, but there is also a very important element in Alzheimer’s patients that must be cared for and that is socialization. Seeing themselves alone again, losing contact with other patients, with other people, stopping walking around the garden area, being together playing games and interacting all together …, that has hurt them tremendously.
“The Law of Dependency was made without affection, sustained in a socio-sanitary space that does not exist”
How can this deterioration be quantified?
A deterioration has been noted in every way. Physically they have been noticed because the lack of activity and movement favors Alzheimer’s, but when the sedentary lifestyle begins there is a cognitive deterioration. The natural tendency of these patients is to remain still out of fear in some cases, because they no longer have stimuli … and this causes a loss of muscle mass that also has its importance in people’s health. This is a spiral where the affected person is getting worse. When they are in the day center there is an activation of all kinds, not only do physiotherapists act, in addition to table work, there are movement in the open air, which stimulate motivation among patients to be active. This physical and also psychological stimulation because it unites people by sharing activities, in an environment of trees, of tranquility, helps them to stimulate their brain despite the illness they have.
He spoke before the Law of Dependency. What are the main demands by Alzheimer Canarias?
The Dependency Law that was launched in 2007 had a very clear objective, which was to establish a new subjective right for Spaniards, that of being treated in a situation of dependency, but it had two fundamental problems. The first, that dependence is not a matter of social issues only, also of health because most of the dependence is related to the disease, that disease causes dependence and that dependence causes a social problem, therefore, what what was sought was that there be a meeting between health and social care. Then and today, people continue to talk about the socio-health space, which would be conceived as a space for coexistence between health and social affairs, but that does not exist and has never existed. And that was one of the main problems that the Law had, the Minister Caldera did not succeed in getting the Ministry of Health to ally itself with the Ministry of Social Affairs to create a real socio-sanitary space. Therefore, speaking of a socio-sanitary space is an entelechy, it does not exist. The second problem with the Law is that it was issued without a financial record, and this was used by the opposition parties to oppose the Law, not to its approval but to its execution. And we are still experiencing the damage caused by this boycott of the Dependency Law itself. Therefore now we do not have a real application of that Law.
“The great problem of Alzheimer’s and other dementias patients is that they cannot defend themselves”
What is the situation in the Canary Islands regarding the Law?
In the Canary Islands, the structures to develop the Dependency Law were created reluctantly, it was done without taste, without wanting to, and that has been noticed in every way. People who go to this Law point out that in many cases they look at it badly, and it is not a problem of professionals, but of the system that is bad in itself, it must be reviewed and changed, in the Canary Islands and in Spain, because it is made without no affection, sustained in a socio-sanitary space that does not exist. From the moment you request it until they appoint you to make the intervention plan, it may take one or two years and it turns out that the person is no longer in grade two but three and then they tell you that it no longer corresponds to them, and to go to the another window. There are many cases that call to assess when the person had already died. The system itself has difficulties to harmonize health with social, therefore I do not know how it is still called a socio-health space.
Do you think that this deficient system is paid for by the associations of those affected?
Yes, there is still an abuse of what third sector organizations are. The government or municipalities cannot rely on these organizations, in looking for volunteers to solve their deficiencies. The great problem of the patient with Alzheimer’s or other dementias is that he cannot defend himself, we have to be the ones who defend him because otherwise we would also be unworthy.
“The closure of the day centers has caused a progressive deterioration in those affected”
What will be your first steps in this defense?
The first step is already being the contact with the public administrations, and I also want to meet with the University of Las Palmas to reactivate an agreement that we signed as rector and that has already expired. The current rector has already shown me his agreement, and we want it to be an agreement with a very specific mission that has to do with the training of personnel, professionals both in the field of health and social work and in others such as the activity physical. One thing is that the person is sick and another is that we do nothing to minimize the risks, we have to work for healthy aging. It is not about being active but healthy, in this world we boast that we live longer, without realizing that we live badly. And Spain is one of the countries with the highest number of elderly people, but in the number of years free of disease from 65 we are below the average, therefore there is a very long way to go in the fight for the prevention of Alzheimer’s disease but trying to have a healthy aging.
Has the pandemic exacerbated this healthy aging goal?
The pandemic has stripped us naked, has drawn the curtains and has shown us the discrimination that there is towards the elderly. We have come across indications that young people must be given priority, that the elderly cannot go to a hospital because they occupy beds, that if they are already old they want to … And neither does the development of dependency on the elderly it is exempt from discrimination. Therefore, the fight is in two ways, that of healthy aging and for this it is essential to fight against discrimination against the elderly. The World Health Organization and the United Nations warn us that older people have not lost their rights or their dignity as persons.