What was promised is due. In December 2020, when I interviewed the psychologist and artist Mercedes Carrillo for the post The "Schindler's List" effect, in which she narrated her experience as the relative of a dementia patient who had been institutionalised for years in a specialised centre -and why not reiterate it - promised that one day I would tell what little I know - not because I am admittedly ignorant, but because hardly anything is known in general - about the role boredom plays in the daily lives of people suffering from this type of mental illness and in the lives of those around them. It may have taken me a while to deliver, but here I am at last. I also promised, by the way, a couple of articles ago, that I would return to the subject in which I specialise, boredom, and stop rambling on about the various forms of discrimination suffered by older people. On the latter, I can't promise anything because the subject makes me a sea of doubts that I am obliged to let surface from time to time. But for the moment, I am temporarily returning to the fold.
Boredom and dementia; nothing good can come of such a pairing. Both phenomena share the destiny of filling pages and pages of books and scientific articles without, however, lending themselves to being fully understood. When we hear them mentioned, we all know more or less what we mean; it is not necessary to rehearse a definition every time we use these words in order to express ourselves about their experience and to communicate with others about it. And yet, despite the enormous efforts that researchers, on both sides, and even those who study both instances at the same time, tirelessly carry out, they still appear to us as strangers who resist any exercise of apprehension.
I have spoken a lot about the one in this blog since it began almost a year ago. The other is remotely close to me, because Tata "lost her mind", as they say, after suffering her second cerebral thrombosis. When I think, without going into the specialised literature, of dementia, what comes to mind is the memory of my grandmother believing, at 92 years of age, that she had to go and look after her sick mother, who had been buried for a good handful of years at the time. I also see her watching me arrive at the residence and greeting me, saying "Hola Margarita!"; I think she mistook me for my cousin, or perhaps her late daughter, or any of the other female members of the family who were named in honour of this unfortunate early demise - and they are not few in number. In another (metaphorical?) sense, I am struck by the words of the English philosopher and physician John Locke (17th century) when he said, in his Essay Concerning Human Understanding (1689), that, at heart, all human beings harbour a certain degree of insanity.
I am convinced that a good percentage of readers have the same thing that happens to me: that I have no idea what dementia really is. And, to be more specific, I would have no way of explaining at a glance what its meanings, causes, symptoms and consequences in older people are; much less would I be able to talk about treatments. The questions pile up if I take the matter seriously: do all elderly people who suffer from confusion or episodes of forgetfulness have dementia? Is dementia common in the elderly? What percentage? Will we all end up suffering from dementia when we are old? Are all dementias the same? Is there a cure for dementia? How do I know if someone around me is showing symptoms of dementia? Is dementia the same as Alzheimer's? What on earth is dementia?! And probably the most obscure question of all, returning to the public debate: is it correct to use the term senile dementia?
Those of us who are not involved in its field of study or who do not experience it first-hand on a daily basis have more questions than answers. And we should not be surprised, because it is a taboo subject. Dementia is as stigmatised as boredom in our society. Certainly more so. Nobody wants to talk about boredom because it is the correlate of a lack of productivity, of the unpopular idleness that has been punished for centuries and of which the lazy, the fruitless, those who waste their time or have no capacity to use it meaningfully are victims. No one wants to be around a person who defines himself as boring. But much less one who recognises himself as diagnosed as insane. Such a letter of introduction is shameful for anyone in this sick world, because dementia is a mental illness and the demented person carries the shame of an imperfection that attacks the most valuable organ of all: the brain, the one that makes us rational beings and gives us an identity as individuals and as a species. Boredom may become a mental disorder in exceptional cases - and no doubt its experience may worsen pre-existing ones - but dementia is a disabling illness that shows that we are no longer useful to the group, which boredom is far from being. Maybe it will be in the future, if that is what the DSM says. But at the moment it is not. Boredom sounds like something remediable; dementia smells like eviction. And together, is this really the case?
In view of this, if we want to talk about dementia (and boredom) with any rigour, we have no choice but to get information from reliable sources first. I have already done so. And before I go on to explain how the dance between these two punishments occurs in the elderly, I am going to share with everyone as simply and quickly as possible what I have been able to learn from my research.
Dementia is the progressive loss of cognitive functions due to brain damage or disorders. It can affect any of the functions of this organ, but especially memory, attention, visuoconstructive skills (drawing or making two- or three-dimensional constructions), the use of language, the ability to solve problems and to inhibit certain responses, as well as motor skills. As a result, people with dementia may have problems orienting themselves in space-time, identifying themselves, other people and even everyday items, understanding and reacting to what is happening around them, and performing certain tasks. As the disease progresses, psychotic, depressive and delusional features or hallucinations and behavioural and personality changes may also appear. All this leads to an inability to carry out the most mundane activities and forces the sufferer to require care and assistance from others.
The most common form of dementia is Alzheimer's disease. This is a cortical, degenerative or primary dementia caused by the loss of neurons and neuronal connections due to alterations in neuronal metabolism itself, which means that it is irreversible and progressive. It is known as "senile dementia" because it mainly affects people over 65 years of age, with a prevalence that doubles every five years after that age. Of course, it is the most famous and feared, but within the dementias due to neurodegeneration there are a couple of others that most of us have hardly heard of: Pick's disease (the neurodegeneration is in the frontotemporal lobe) and Lewy body dementia (the loss is centred in the frontal, parietal and temporal cortex and in the neuronal cytoplasm). This is logical, with Alzheimer's being the type that accounts for 60-70% of all dementia cases worldwide.
There are also the so-called subcortical or secondary dementias. The cause is the same, neuronal degeneration, but they are caused by something external to neuronal metabolism and are therefore treatable. This category includes vascular dementia or multi-infarct dementia (the second most recurrent type of dementia in older adults - the third is Lewy body dementia - caused by lesions in the blood vessels of the brain), AIDS dementia complex (metabolic encephalopathy induced by HIV infection), depressive pseudodementia (severe depression involving symptoms of dementia such as disorientation and decreased attention), normotensive hydrocephalus (increased cerebrospinal fluid in the brain, also typical in the elderly), delirium states, hypothyroidism, vitamin B6 or B12 deficiencies, some tumours, head injuries, Parkinson's disease, Huntington's and Creutzfeld-Jakob diseases (both hereditary) and Down's syndrome.
Finally, there are what are (mis)known as immune-mediated dementias, such as celiac disease, Behcet's syndrome (inflammation of blood vessels in the brain), multiple sclerosis, sarcoidosis (growth of small accumulations of inflammatory cells), Sjögren's syndrome (destruction of the glands that produce tears and saliva) or lupus, all of which are treatable to a greater or lesser extent and are currently being studied.
Depending on whether a case of dementia is reversible or not, depending on its nature, treatments, if applicable, range from antipsychotics to benzodiazepines, antidepressants, anxiolytics and other drugs that act on serotonin levels and, of course, the sedatives or neuroleptics that Mer complained so much about in his interview. Of course, whether the type of dementia is curable or not, occupational therapy is essential - which, fortunately, does not always consist of making figurines out of breadcrumbs - and the care that caregivers can offer, which sometimes differs from traditional remedies, as we will have the opportunity to see.
After this brief introduction, it seems that yes, my grandmother did suffer from a mixture of Alzheimer's and vascular dementia after all. She never had any tests to diagnose it, but it must have been something like that. And she was bored a lot in those years in the nursing home, and how did boredom affect her particular state of mental health, and how did boredom affect her propensity for boredom? And what could the institution she was in take to offer her the best possible quality of life, given the relationship between boredom and dementia? Rather, what did the institution know about the relationship between boredom and dementia, and what did it know about whether or not she was bored? I ask myself a much harder question that I don't want to verbalise, but I can't help but do so: What did the institution really care about all this? I think nothing at all, to the misfortune of my Tata and so many others who were in the same situation. But it matters to me, and I know it matters to you. That's why I'm going to tell it, although it won't be on this occasion. I've gone on long enough today; I've managed to capture your attention and sow the seeds of doubt and curiosity. I have also provided a good deal of information that you probably didn't know or were confused about, and it's time to process it. Now you will just have to wait for the next post to find out how the parties in this sad marriage influence each other.
