Fading with Grace

Auguste’ was born into a working-class family of Kassel, Germany on May 16th, 1850. Her father died when she was very young. Although the family was very poor, she was relatively well educated. At the age of 14, Auguste began work as a seamstress assistant.

In 1873, at the age of 23, she married Karl Deter and moved to Frankfurt, Germany. Karl, her husband, worked in a railway company. Their daughter, Thekla, was born and for a time, they led an ordinary family life.

In March 1901, at the age of 51 years, Auguste started exhibiting irrational behaviour. She abruptly accused her husband of adultery. She was careless with the housework, hid items intentionally, and incomprehensively lost her ability to cook properly. She experienced problems in writing and serious alteration was detected in usual conversation. Insomnia manifested and before long, her sense of direction was lost. She dragged a bed sheet outside, wandered around wildly, and she cried for hours at midnight. Her condition deteriorated rapidly, and she became restlessly boisterous, threatened neighbours with a horrible shriek, and started to doubt every movement of complete strangers for no reason. Delusion had begun and subsequently, her memory decreased rapidly.

Karl took Auguste to a hospital, and a doctor decided that she could not work anymore due to symptoms such as memory impairment, mania, insomnia, and agitation and recommended admission into a mental hospital. Auguste entered the Frankfurt mental hospital on 25th November 1901.

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In the hospital, Dr Alois Alzheimer oversaw her care, and obtained her detailed clinical history. Despite her ability to speak her own name, she answered to her husband’s name. She could not write her own name upon a request. She could recognize and name objects such as pencil, key and cigarette. However, when she was questioned about what kind of food she was eating during a meal, she replied that she was eating ‘spinach’, although eating meat and cauliflower. She was unable to fully remember the objects she had looked at. When it was difficult for her to answer Alzheimer’s questions, she repeatedly stated, “So to speak, I lost myself.”

In the evening, symptoms became more intensified. Alzheimer diagnosed the case as ‘presenile dementia’. Little did he know the disease would be named after him.

Throughout her hospitalization in the mental hospital, despite loud crying and offensive behaviours to others, once in a great while, she would behave politely and kindly to people around her. By day, she had to stay in the bath filled with water to calm her down, and by night, to protect her, she had to stay in an isolated room that was securely locked. On one occasion, she left the room, and started running away while shouting puzzling words; “I don’t stab myself. I will not stab myself.”

For continuous observation, Alzheimer made Auguste stay in the hospital. However, the medical expenses were too much for Karl. He visited his wife as often as possible, while struggling to cover the cost. He often demanded moving her to a more affordable facility. Alzheimer intervened in the situation and allowed Auguste to be continuously treated in the Frankfurt mental hospital, but in exchange, requested possession of all her medical records and her brain on her death. Karl gave his signed consent.

In 1903, Alzheimer moved to the mental hospital affiliated with Munich medical school via Heidelberg at the invitation of Emil Kraepelin. Following Kraepelin’s death, in 1905 Auguste’s condition deteriorated. She mumbled repeatedly to herself, incapable of getting out of her bed alone, and was unable to conduct any regular daily activities on her own including eating. Alzheimer summarized in detail the process and aspects of the memory decline in her medical records. He described her symptoms as progressive cognitive disorder, local neurological symptom, hallucination, delusion, and psychological social disability.

Finally, she lost all cognitive ability, and succumbed to septicaemia and pneumonia on 8th April, 1906. She was 55 years old at the time. Her brain was sent from Frankfurt to Munich together with the medical records. Alzheimer conducted a biopsy of her brain immediately.

First, he conducted a biopsy of brain to investigate the correlation between the medical records and the patient’s symptoms. He found that the cerebral cortex was generally thinned. The region that controlled memory, language, judgement, and thinking was severely impaired. Senile plaques were formed in neurons, and tangles were found in nerve fibres. At the time, the consensus among medical doctors was that senile plaque could be found in 70-year-old patients, while occurrence of neurofibrillary tangles was a new observation. Considering her age, both findings were exceptional.

Currently, this case would be diagnosed as early-onset Alzheimer’s dementia.

Someone told me that dementia can be likened to a philosophical death, as opposed to biological death. She described it as a limbo, where one is not dead and yet, not alive. Forgetting personal life history and difficulty in retaining even fragmentary reminiscences of life, can result in a great deal of pain to those who share a collective memory of the past.

Imagine a life where you cannot remember your name? Where you cannot recognise your children? Where you do not know who you are? Where you don’t recognise basic feelings like hunger and instead stay starving until someone remembers that you have not eaten? Where you go out and forget the way home? A life where you don’t know your name? Where everyone is a stranger and so you live in perpetual fear of them?

The term, ‘Alzheimer’s disease’ has been used for over 100 years since first used in 1910. Alzheimer’s disease is the most common form of dementia.  With the remarkable growth of science and medical technologies, the techniques for diagnosis and treatment of dementia have also improved. Although the effects of the current symptomatic therapy are still limited, dramatic improvement is expected in the future through the continued research on disease modifying strategies at the earlier stage of disease.

Globally, dementia is one of the biggest challenges we face, with nearly 50 million people living with dementia worldwide. The lifetime risk for Alzheimer’s at age 45 is 1 in 5 for women and 1 in 10 for men. Scary statistics.

World Alzheimer’s Day, which takes place every Sept. 21, is a global effort to raise awareness and challenge the stigma around Alzheimer’s disease and other dementia. Many people in modern society perceive dementia negatively because of its symptoms and social perceptions, causing patients and their families in a very difficult situation. Thus, a good understanding of dementia is a first step to eliminate the widespread social stigma and promote public health.

Alzheimer’s is a cruel disease. When it affects someone you love, you don’t lose them all at once; you lose them in increments. They’re present in body, but the essence of who they are slowly fades, like a photograph left in the sun.

In 1994, Ronald Reagan , in his fifth year after office, wrote a letter announcing his diagnosis: “I have recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer’s disease……… I now begin the journey that will lead me into the sunset of my life….”

Whatever becomes of the sunset of our lives, may we live it with dignity, love, compassion and understanding of family and friends, ameen.

Fade with grace!