Questions to ask

I have written 2,567 words for my final chapter today, of which I expect to be concluded by next Tuesday. For the thesis, I have written close to 52,000 words. I thought about the time a few months ago when I was lamenting about how I was going to write 60,000 words for the thesis. If I was asked how I felt, all I could probably manage now is a shrug! I am far too tired to form any words of how I am feeling right now.

Sometimes I revisit my older posts to see if there are any additional points I could add, or if I might have written something insensitive that my past me would not have noticed and aware of. I thought, not in particular about the subject of the experiment, but more about the subject of ethics as I stumbled upon this article on Alzheimer’s patients the other day. Alzheimer’s is the most common form of dementia, which involves severe loss of mental capacity through a mechanism where proteins such as tau and amyloid are formed and clumped inside the patients’ brains. When this happens, it affects the capacity of language, reasoning, and mood. The older population are the most susceptible to the condition as one’s mental capability slows down as we age.

As dementia patients often slip into past realities, they might forget who they are at the given moment and only remember the moments when they were younger. In the article, it is said that in the 1960s, nursing homes with Alzheimer’s patients would use a technique called reality orientation — a technique that, when the patients forget, they would be reminded of the actual time and date, and where they are. The patients would often get distressed as it conflicts with their perceived reality. The method was then challenged, where it was then validation therapy was introduced. With this method, the caretakers would not correct the patients, but instead play along. I think about the time when I watched some older folks I knew slipped into their past lives, and instead of correcting them — which had been done numerous times before — their family members would just go along. That was in a family setting, but how ethical it is in institutional settings such as hospitals or homes? But consider this:

Lying to most patients in this way now seems obviously wrong; but when it comes to people with dementia there is no consensus. To lie is to violate the respect that one person owes another; but lying to a person with dementia can protect them from awful truths that they have no power to alter. If a woman asks for her husband, having forgotten that he is dead, should you tell her the truth and cause her terrible grief, knowing that this fresh bereavement will likely repeat itself, over and over, day after day? Or should you just tell her that he is at the office? And is direct lying different from various forms of passive lying—encouraging delusions, or allowing existing delusions to persist? What is more important—dignity or happiness?

Unrelated, but — I often go back to this tweet from @prisonculture every time I found myself faced with any form of injustice, and was too enraged to do something about it:

  • What resources exist so I can better educate myself?
  • Who’s already doing work around this injustice?
  • Do I have the capacity to offer concrete support & help to them?
  • How can I be constructive?

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