The cruellest goodbye
One of the cruellest diseases of aging is Alzheimer’s Disease. I have a special personal interest in Alzheimer’s, as well as a professional one.
In terms of cells and tissues, Alzheimer’s Disease is a type of neurodegenerative disease. Neurones in the brain gradually stop functioning, and die. This often has early effects in the hippocampus, a region of the brain that allows us to recall memories, but in reality by the time that people show symptoms, cells from many parts of the brain are dying. The cell death is so dramatic that the brain is visibly shrunken in patients with advanced disease.
In terms of molecules, Alzheimer’s is a protein aggregation disease. Two proteins in particular – A-beta and Tau – form aggregates in the brain that are characteristic of the disease. Whether those aggregates themselves kill cells, why they form, and whether removing them will help, is unknown.
In medical terms, Alzheimer’s is a progressive dementia. Dementia literally means “no thinking” – people lose the ability to think coherently, especially where memory is needed. But in reality memory is central to almost all thought. (Everyone has had the experience of walking into another room and then realising they had forgotten what they came for. Imaging that happening every second of every day.) Reasoning also starts to fail later in the disease. And the brain’s ability to monitor its own function fails, so when patients cannot remember something they just make up nonsense to fill the gap, a process called confabulation.
And in personal terms? For the patient, they know they cannot cope with the world around them, but cannot understand why. The world becomes filled with confusing strangers, incomprehensible actions. Sometimes they remember what they have lost, and weep for their incompetence. Sometimes that cannot remember, and become angry that no-one will let them drive the car or go online to the bank. Those who do not realise how their minds are fading, who are never forced to face their decline into what is literally a second baby-hood, are in many ways the lucky ones.
For the family and those who love the patient, they see a smart, competent, engaging, knowledgeable person disintegrate day by day, week by week, year by year. Alzheimer’s has minor reversals, good days and bad days, but the trend is inexorably down. That joke you used to share? He no longer understands. That place you used to go every year in the summer? She no longer remembers. That hobby you used to do together to relax on Sunday afternoons? They cannot do it. A chess player becomes unable to remember the moves. A musician cannot follow the music. Reading becomes impossibly complex. Casual conversation becomes an exhausting intellectual challenge. You get lost in your home town, in your own house. Eventually even the basics of life – dressing, washing – become too difficult to understand. And with the death of cognition, all the spark, the personality that once inhabited that body fades. You talk to them as if they were still there, as if they still remember you, but you know, really, that they have little understanding that you are their daughter, their brother, their wife.
And at no time have you been able to say goodbye. By the time death claims them, an Alzheimer’s patient is a shell, and it is too late to say goodbye to the person they once were.
I have a couple of lines of research in this field, but that is not enough. If you can contribute, with ideas, research, donations to charities, please do.