In the context of our mission to provide support and care to those facing mental health challenges, it is critical to address Alzheimer’s disease, which has been described as a “silent pandemic.” This condition affects not only those who suffer from it, but also their families and caregivers, who face a complex emotional and physical process. Today, at Sisters Hospitallers of the Sacred Heart of Jesus, we are privileged to share the reflections of Mariana Correia, a specialist in Clinical and Health Psychology at the Espírito Santo Health Center (Terceira) in the Province of Portugal. Through the story of her grandmother, Mariazinha, Mariana offers us a deep and poignant perspective on the impact of Alzheimer’s on everyday life and the importance of compassion, memory and care in our relationships.
Below, Mariana shares her personal story that illustrates the reality of many families facing this disease.
Mariazinha: A silent pandemic
I don’t know where to start when I think of my childhood summers. There are so many stories to tell, memories of other times, etched forever by the strength of the bonds we created. The summers seemed endless, spent at my grandparents’ house on Graciosa Island. Curious how, in that place where they lived, time seemed to have frozen; in “Pedras Brancas”, nothing changed. However, even with my childish innocence, I felt that something was changing in that place where time had frozen traditions. Without realizing it, the silent pandemic was already spreading, insidiously.
My grandmother, “Mariazinha”, was a very special woman. Over time, she began to forget those she loved the most. In the summers that followed, I remember thinking how much fun it was to sing to her, because she would repeat the lyrics and refrains with me. Over the years, I witnessed my father become increasingly devoted to my grandmother, coping with the difficulties that arose when she wandered around the house or became disoriented. I often looked forward to mealtime, remembering the smells and colors of other times, waiting for the moment when it would be my turn to feed her. I was happy to see her smile. But when I looked into her eyes, now empty, I searched endlessly for my grandmother. She no longer sang, but remained silent.
Today, as a psychologist, I see many “little Mariazinhas”, and in each of them I see a special woman. These are stories that they have forgotten, but that we continue to remember. We talk about one of the greatest social, health and scientific challenges of our time: Alzheimer’s disease (AD).
Alzheimer’s disease affects everyone differently, and the signs and symptoms in the early stages often go unnoticed, as the onset is gradual and the process remains silent for many years. Demographic trends make it the epidemic of the 21st century. “It is a silent pandemic,” as Shekhar Saxena, director of the Department of Mental Health at the World Health Organization (WHO), described it.
The most common signs and symptoms in the early stages of the disease usually consist of a tendency to forgetfulness, loss of sense of time or spatial disorientation, even in familiar places. As dementia progresses, symptoms become more evident and limiting.
In this phase, those affected begin to forget recent events, as well as the names of family members; feel out of place in their own home; lose fluency in language and find it increasingly difficult to communicate; begin to need constant help with daily activities, hygiene and self-care; and experience behavioral changes, such as wandering around the house or repeating the same questions. The decline in cognitive function is often accompanied by reduced emotional control, social interactions and motivation.
In the later stages of the disease, the disability is profound and the patient is unable to care for himself, becoming almost totally dependent and inactive. Memory disturbances are severe and physical symptoms become more evident: increasing disorientation in time and space; difficulty recognizing family and friends; loss of speech; increasing dependence on self-care; difficulty walking; and behavioral disturbances that may worsen.
These illnesses can be devastating not only for the people who suffer from them, but also for their caregivers and family members. In addition, there is often a lack of awareness and understanding about these conditions, which can lead to stigmatization of patients and make it difficult for them to seek appropriate diagnosis and care services.
Although more than a century has passed since the German psychiatrist Alois Alzheimer described the disease that would bear his name, most of what we know today about its origins and mechanisms has been discovered in the last twenty-five years.
Research in recent years has made it possible to diagnose Alzheimer’s disease more accurately, at earlier and earlier stages, which is essential for making medical and personal decisions. However, definitive diagnosis is currently only possible by post-mortem neuropathological analysis of the brain, after autopsy, to determine the presence of senile plaques and neurofibrillary tangles.
The diagnosis of Alzheimer’s disease is complex and is initially based on excluding, as early as possible, other pathologies that may be causing or contributing to the progression of symptoms, such as signs of previous stroke, depression and other types of dementia. This is especially important if we take into account that we are talking about a population that often presents other pathologies, age-related or not, and that is often subjected to several simultaneous pharmacological treatments.
Many people have wondered whether Alzheimer’s disease is hereditary, that is, whether it is transmitted from parents to children. From a genetic point of view, this pathology can be classified into two types. The vast majority of patients have no family history of the disease, but about 1% suffer from a hereditary variant known as familial Alzheimer’s, which manifests itself in people under 60-65 years of age, usually around the age of 50. In fact, much of what science has learned in the last two or three decades about the causes of Alzheimer’s is the result of discoveries in the field of genetics.
Aging remains one of the greatest challenges facing modern societies. To ensure an active and fulfilling life for older people, we need effective strategies that promote health and well-being in the later stages of life. The question is what does it mean to grow old in our world and in our time. There is a tendency to limit the phenomenon of aging to the realm of medicine. However, this is reductionist, because aging is not a disease, although it is often accompanied by other conditions and diseases.
In honor of. To Mariazinha, my grandmother.
