How not to talk about dementia

NO, dementia does not exist. In fact, attributing cognitive fragility simply to age is not only incorrect from a scientific point of view, but creates a prejudice that hinders the correct diagnosis of each individual’s specific disease. Diagnosis that every person has the right to have. And no, these people are not “invisible”: another label to erase, especially from the minds of clinicians. Often, in fact, patients are ignored during visits, not involved in treatment decisions, defined as “incapable”, “not self-sufficient”, “aggressive” or even “crazy”. All terms that contribute to the stigma of dementia. “We need to unhinge this language, and that’s what we try to do every day,” Mariella Zanetti, who works as a geriatrician at Paese Ritrovato, tells Salute on the outskirts of Monza, built in 2018 at the behest of the La Meridiana Cooperative (thanks to donations of families, organizations and businesses of Monza and Brianza) and conceived as a real small village, in which residents with Alzheimer’s disease or cognitive impairment (in a mild or moderate phase) are enabled to independently lead a life suited to their conditions.

The possibility of self-determination

In fact, when we talk about people suffering from Alzheimer’s or dementia in general, most often we describe patients who are no longer adequate to live everyday life. But are we sure that’s the case? Is anyone with these conditions really unable to make choices, cultivate interests and friendships? Five years of experience of Paese Ritrovato demonstrate the opposite. The data on the effects of this approach on quality of life were previewed in recent days, during the conference “Taking care of frailties. Neurodegenerative diseases and dementias: social and health impact”, organized by the Roche Foundation and the La Meridiana Cooperative. “In these 5 years we have sought a new gaze with which to look at these people – continues Zanetti – and to overcome the traditional, medicalized model with which they are usually hosted. Current models put the emphasis on what one is no longer able to do and create a condition in which the patient can only be a spectator of his own life, contained by the place or by the drugs. We are trying to contrast this model with a model of care that really puts the person at the centre: not only his neuro-cognitive characteristics, but his personality, his habits, his way of relating to others. The goal is to restore the dignity of the possibility of a choice, even the most banal: what time to wake up, where to go to eat, with whom and where to stay. And to be able to self-determination, even in the treatment”.

Data from the quality of life analysis

In Paese Ritrovato the residents (all self-employed) live in 8 apartments for 8 people each, with private bedrooms and bathrooms and other common areas, such as the kitchen. In the village there is a square, a vegetable garden, a garden, shops, a church, a library, a craft shop, a gymnasium, a cinema, a theater-cinema. Orientation is facilitated by colours, lighting and signage, and the environment is obviously controlled, but in the most discreet and “invisible” way possible.

What impact does this management have on people? To answer, Zanetti and colleagues administered structured interviews according to the QUALITY_VIA protocol, a tool for identifying the needs and satisfaction of residents with cognitive impairment in the long term. Over about two years, 35 guests (25 women and 10 men) were involved with an average age of 81.5 years, average schooling of 9.35 years, and moderate impairment of cognitive abilities (average score of the Mini -Mental State Examination of 20.95). Overall, almost one hundred interviews were carried out, until the beginning of the pandemic. Well, the average value for the perceived quality of life turned out to be over 100 (on a reference value of 99.75 and compared to the value of 77.8 of a traditional RSA). Satisfaction with care received, environment, relationship with staff, activities, privacy and purposefulness, social cohesion, self-actualization and spirituality was also measured, and results indicate almost always values ​​equal to or higher than the reference ones. One of the lower values ​​concerns the statement “I am satisfied with the health care services”, but the analysis of the answers shows how often the residents do not feel they have to answer this question, since they do not perceive the village as a health resort healthcare. Full data will be presented at a conference next month.

Reclaim the movement

To understand how the environment can affect the well-being of those suffering from dementia, the experts of Paese Ritrovato also compared the use of spaces and the movements of guests with those who usually live at home with a caregiver. “At home, 40% of the time is spent between the sofa and the kitchen and 60% of people remain seated – says Marco Fumagalli, Coop Educational Service Coordinator. La Meridiana – Furthermore, most of the movements are not spontaneous but conditioned by the caregivers, who indicate how to move and what to do or not to do. In the Village – continues the educator – the ratio is reversed: 70-80% of the time is spent on the move, almost always spontaneous. With relatives we decide to accept a slight increase in the risk of falling in the face, however, of an enormous gain in freedom. The spaces of the village are different and each one corresponds to a choice of the person”.

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So many clichés to overcome

Once free from the sense of control and surveillance, the experts continue, various interests can re-emerge, such as curiosity, the desire to go back to learning, to participate in theater, poetry or cooking workshops. In recent months, for example, one of the guests is teaching a German course. Those who follow it will probably not learn the language and perhaps in the evening they will not even remember having taken the course, but they will experience a moment of pleasantness and cognitive stimulation. Not only that: those suffering from Alzheimer’s can also experience a strong affectivity: friendships, alliances and even love stories are born. “There are so many false myths about people with dementia that we need to overcome, for example the idea that they are aggressive, unable to be among others, no longer able to learn and become curious – comments Zanetti – In reality, beyond their cognitive deficits, are people who have habits, hobbies and desires. Aggression is often the response to behavior that is not appropriate for them”.

A void to fill and the illusions of the PNRR

It is clear, therefore, that today there is a vacuum in the treatment system for forms of dementia: one passes directly from the home to the RSA, where there are specific units that are not always adequate for the needs of patients and families. A not insignificant problem if we consider that in our country, where today there are 600,000 people affected by Alzheimer’s, the incidence of this disease will go from 204,584 new cases per year in 2020 to 288,788 in 2040. taking care of frailties intersects various problems concerning the current situation of our national health system – comments Mariapia Garavaglia, President of the Roche Foundation – Missions 5 and 6 of the PNRR had created expectations, which I now allow myself to define as illusions, because the many The funding made available is mainly intended for the structures and not for the organization of innovative services, with the exception of digitalisation. In particular – concludes Garavaglia – a total absence of services dedicated precisely to the great disabilities due to Alzheimer’s disease and dementia emerges. Statistics and sociology clearly indicate how the taking charge of frailties will have to change, understood both as ‘to cure’ and as ‘to care’. And therefore not only pure professional preparation, but also a qualified proposal of psychological attitudes towards fragile people: gentleness, attention, patience. Not only personal and voluntary virtues, but therapeutic choices that can restore to patients the fullness of dignity that belongs to every human being, even in the deepest and most inscrutable suffering”.