In the context of our mission to provide support and care for those facing challenges in their mental health, it´s critical to approach Alzheimer’s disease, which has been described as a silent pandemic. This condition affects not only those who suffer from it, but also affects their families and caregives, who face a difficult emotional and physical process. Today, at Sisters Hospitallers of the Heart of Jesus, we are privileged to share the reflections of Mariana Correia, specialist in Clinical and Health Psychology at the Health Holly Spirit Centre (Terceira) in the province of Portugal. Through her grandmother’s story Mariazinha, Mariana offers a profound and moving perspective on the impact of Alzheimer’s on daily 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.
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, engraved forever by the strength of the bonds we created. Summers looked endless, spent in the house of my grandparents, on the island of Graciosa. It’s curious how, in that place where they lived, time seemed to have frozen, in “Piedras Blancas” nothing changed. However, even with my childish innocence, I felt that something was changing in that place where time had frozen traditions. Without realising it, the silent pandemic was already spreading, insidiously.
My grandmother 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 choruses 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 mealtimes, remembering the smells and colours of times gone by, waiting for the moment when it would be my turn to feed her. I was happy to see her smile. But as I looked into her now empty eyes, I searched endlessly for my grandmother. She no longer sang, but remained silent.
Today, as a phycologist, I see many “small Mariazinhas”, and in each of them I see a special woman. There are stories that they have forgotten, but the we still remember. We are talking about one of the big social, health and scientific challenges of our time: Alzheimer´s disease (AD)
Alzeheimer´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 silents for many years. Demographic trends make it the epidemic of the 21st century. “It´s a silent pandemic”, as Shekhar Saxena, director of the World Health Organisation’s (WHO) Department of Mental Health, described it.
The most common signs and symptoms in the early stages of the disease are often 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, people begin to forget recent events and 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 behavioural changes, such as wandering around the house or repeating the same questions. The decline in cognitive function is often accompanied by a reduction in emotional control, social interactions and motivation.
In the more advanced stages of the disease, the disability is profound and the patient is unable to care for him/herself, becoming almost totally dependent and inactive. Memory impairment is severe and physical symptoms become more evident: increasing disorientation in time and space; difficulty recognising family and friends; loss of speech; increasing dependence on self-care; difficulty walking; and behavioural disturbances that may worsen.
These diseases can be devastating not only for the people who suffer from them, but also for their caregivers and families. In addition, there is often a lack of awareness and understanding of these conditions, which can lead to stigmatisation 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 now know 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 increasingly 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 particularly important in a population that often has other pathologies, whether age-related or not, and is often undergoing several simultaneous drug treatments.
Many people have wondered whether Alzheimer’s disease is hereditary, i.e. whether it is transmitted from parents to children. Genetically, the disease can be classified into two types. The vast majority of patients have no family history of the disease, but about 1% suffer from an inherited 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.
Ageing remains one of the greatest challenges facing modern societies. To ensure active and fulfilling lives for older people, we need effective strategies to promote health and well-being in the later stages of life. The question is what it means to grow old in our world and in our time. There is a tendency to limit the phenomenon of ageing to the realm of medicine. However, this is reductionist, because ageing is not a disease, although it is often accompanied by other conditions and diseases.
In honour of Mariazinha, my grandmother.