My mother was diagnosed with Alzheimer’s disease and vascular dementia in 2018 through a brain MRI — without my knowledge at the time — and then again in 2020, through a Mini-Mental State Examination conducted while she was with me. In the months that followed, I found myself asking her physician countless questions about the disease and its symptoms. Eventually, he referred me to the Turkish Alzheimer Association. I made use of every service they offered: educational programmes, seminars, nurse visits, and both in-person and virtual support groups. For the past two and a half years, I have also been a member of the European Dementia Carers Working Group (EDCWG) within Alzheimer Europe, where I have had the opportunity to connect with fellow carers from across the continent.
There are universal themes that unite those who care for a person living with Alzheimer’s. One of them is guilt — often accompanied by regret. Many carers feel they recognised the illness too late, or that they failed to take sufficient action in time. I belong to that group. I have often caught myself thinking, “If only I had foreseen this. If only I had been more informed and more accepting of what was coming.” In Chapter Three of “Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain”, titled “Dementia Blindness — Why Does It Take So Long to See the Disease?”, Dasha Kiper explores precisely this theme.
Throughout the book, I encountered passages, examples, and reflections that deeply resonated with me. In the dialogues drawn from case studies, I recognised my own conversations with my mother. Realising that I was neither alone nor mistaken in my reactions was profoundly comforting.
The progression of the disease can be astonishing. A person’s mood fluctuates dramatically — one day very distressed, another day seemingly back to their old self. Your loved one may remain in denial, and attempts to persuade them to acknowledge the illness or accept treatment can lead to painful confrontations. Each intervention, each struggle, can leave you feeling emotionally depleted — as if, in the words of a well-known Turkish song, your hands are empty and your eyes filled with tears. Being caught unprepared for the difficult surprises along this journey is never easy. Over time, I made it a habit to consult the association’s nurse and physicians whenever a new challenge arose. I learned about the recently published Turkish translation of this book through Ezgi Gizem Gürbüz, a colleague from the Turkish Alzheimer Association. I wholeheartedly recommend it to all those who are traveling through their own “unimaginable lands” alongside a loved one.
If we accept that “dementia blindness” can affect family members as well, then I believe part of the burden of detection should shift toward healthcare systems. I hope for diagnostic tools that are as clear and accessible as those used for diabetes — simple, reliable tests and indicators that allow for early detection. Ideally, screening could be offered routinely to individuals in higher-risk groups, certain age brackets, or anyone who wishes to be tested.
My greatest hope is that Alzheimer’s disease will one day be diagnosed so early that it can be managed through routine monitoring, much like hypertension or diabetes — transforming it from a devastating surprise into a condition addressed proactively and systematically.
Below are a few selected excerpts from “Travelers to Unimaginable Lands”:
"Sometimes the hardest part of listening to caregivers is knowing I can’t assuage their guilt. When I tell them that they deserve time off, that it will make them better caregivers, many just nod politely. And even when they take my advice and arrange to get away, their guilt rarely dissipates."
"Dementia blindness exists because we do more than merely observe the world around us. We interpret it, as Andy Clark notes, against “a rich background of prior knowledge.” And it’s precisely because we know our spouse or parent so well that dementia tricks us, making us see enough familiar cues to think that everything is fine."
"The research of Nassim Nicholas Taleb seems to support this explanation. Taleb argues that we have a propensity to overlook the anomalous by creating “narrative fallacies” that impose coherence by tailoring unexpected phenomena to fit into our preexisting assumptions. In the same way that we make sense of the visual world (which sometimes means being fooled by it), we form expectations of the people around us, projecting narratives onto family members which obscure the evidence of their impairment. We unconsciously smooth out the anomalies dementia presents so that what looks like atypical behavior to an outsider feels like just another familiar assault to a caregiver. And just as we subconsciously impose preconceived expectations on the visual world, causing us to fall for optical illusions, we bend dementia symptoms to fit what we already know about our spouse or parent."
"The problem for caregivers is that when patients appear the same, it is very hard not to treat them the same."
"In the early and middle stages of the disease, the patient might have fluctuating moods, variable cognitive capacity, and erratic memory, all of which create a chaotic environment. So even when they expect these behavioral changes, caregivers will weave narratives to explain them away. After all, the mind naturally bends what is unpredictable into what feels familiar. In this way, Alzheimer’s hides behind the unpredictability it creates."
