Not to Noemi, not the vaccine now. Mrs Noemi has Alzheimer’s, lives in her own home, not at all self-sufficient, lovingly cared for by her daughter Barbara even though she no longer knows how to pronounce her name. Noemi loves the sun, she likes to be taken to the sea in a wheelchair next to the dog caregiver Lul and does not know what a mask is, she cannot hold it, as tenuous as a wren, she travels on the edge of life for incredibly, scandalously, does not come back in category 1 of the latest government vaccination plan dated 10 March 2021, not included in the group of people with “high fragility” who are entitled to priority treatment.
Extremely vulnerable patients
Noemi has Alzheimer’s, a disease that the coronavirus “likes” a lot: all estimates (including that of the WHO) indicate that at least a quarter of the victims of the pandemic in the world (and therefore also in Italy) had a form of dementia. In our country, about 500,000 people with dementia under the age of 80 live at home, not in facilities for the elderly. They are the majority, they are more than the inhabitants of Bari and Parma put together, any family member or neurologist or geriatrician would confirm that they are “extremely vulnerable” people. But for them no, according to the Ministry of Health and the Istituto Superiore di Sanit, the anti-Covid vaccine is not a priority for them and not even for caregivers (if not those, a very small portion, who use the 104).
The associations of the sick
Whoever drew up “the recommendations on target groups” for the second phase of the vaccination plan (after the first one focused on health workers, staff and guests of residences for the elderly, people over 80) will have forgotten who has Alzheimer’s or a ‘ other form of dementia and lives at home. Or maybe not: because in recent weeks and in recent days family associations (Federation Alzheimer, Aima, Alzheimer Uniti), scientific societies (SINdem, SIGG, SIMG, SIN) organizations of general practitioners, Citizenship active, in short, in many and all Qualified persons sent letters and raised alarms to remind those in charge to include people with dementia in table 1 of the categories to be vaccinated as soon as possible. The Table for the National Dementia Plan, which brings together various national and regional voices and coordinated by the Ministry of Health, also made itself felt strongly. But always in vain. For Naomi and the other 500,000 people (not counting Barbara and all the caregivers) nothing. Maybe because there are so many?
Dementia, forgotten diseases
It is interesting to note that even in the previous version of the plan, the one dated 8 February 2021, there was no reference to dementia, although in the “pathology areas” where vaccination priority was required, “neurological conditions and disabilities (physical, sensory , intellectual, psychic) ”. A month later, table 1 changed: in the list relating to “neurological diseases” (from ALS to muscular dystrophy) there is always a lack of dementias and “intellectual disabilities” as well. There are “dysimmune neurological diseases,” and it seems that in some regions they have started vaccinating people with dementia by passing it off as something else. Unjust, dutiful? Dr. Amalia Bruni, neurologist in Lamezia Terme, president of SINdem, tells of the dozens of messages she receives these days via WhatsApp: The names, the sex, the place of origin change but the indignation is the same: “Doctor, our doctor he said that filippoangelacristinafrancescaosvaldovincenzomarcello etc… cannot be vaccinated because there is no word dementia in the category of extremely vulnerable people. Why? ”. Yet there are and are many – continues Dr. Bruni – wives, husbands, mothers, fathers, brothers, sisters, often still young, sometimes very young, people with Alzheimer’s, or frontotemporal dementia, or Levy’s body dementia , a whole population of non-existent people … if you are sick and there is no word that identifies you on a medical level then it means that you “do not exist”, therefore the vaccine does not affect you … maybe later, maybe with the category of table two … but you must have 104! And here other stories, other messages: “My husband did not recognize the 104 … the commission did not meet … I wait I don’t know how long … but my sister has just been diagnosed … my brother still capable of some autonomy and they don’t give it the 104 ”.
Among the most affected by the virus
Instead the coronavirus this non-existent people recognize it very well. Dementia by definition is a condition of maximum fragility (regardless of age) and patients with dementia – continues Bruni – who do not necessarily have simultaneously hypertension, diabetes, heart disease, etc., must be able to be vaccinated with priority. The data from the Istituto Superiore di Sanit say so, according to which about a third of women and almost a fifth of men who died from Covid in Italy had a history of dementia.
How much disappointment in the messages that arrive to Dr. Bruni and thousands of colleagues throughout Italy: Doctor, but you didn’t say that the vaccine would finally arrive and we could finally start meeting again in support groups, in Alzheimer cafes, the activity of the centers during the day, walks a little further away from home…. And sure: We all said that we care for people with dementia, we believe it. It was the hope with which we tried to manage the very hard period of the official lockdown and the many compulsory or self-prescribed closures by terrified family members that plunged almost all our patients into a chasm and worsened the stress of the caregivers.
A vital necessity
Vaccination therefore – Dr. Bruni remembers – is a vital necessity for patients with dementia and their caregivers. We strongly believe that the government and the institutions will quickly remedy by following up on the words recently spoken by Prime Minister Draghi: It will no longer happen that fragile people are not adequately assisted and protected ‘. Provided we understand the meaning of fragility.