Science Writing

Respecting Realities

One day, if you are unlucky, there may come a time when proteins within your brain misfold, and clump together. 

They will smother your neurons like plaque on teeth and decay your brain in the same way. 

If you are unlucky, you may join the ranks and become one of the unfortunate ~50 million people who have Alzheimer’s. 

It’s a truly horrible, horrific disease. It can affect anyone, regardless of culture, race, gender. Anyone.  

I truly hope you never experience it, within yourself or within someone you know. 

But what happens if you do? 

It depends on the type, but in general your symptoms will start with forgetfulness or getting lost in a familiar place. It will then progress to forgetting recent events, getting lost in the home, behaviour changes, and difficulty with communication. And lastly, Alzheimer’s will most likely cause full late stage dementia – you will lose awareness, not recognise people and need increased help in daily activities.

There are multiple causes of dementia but Alzheimer’s is the most common, and it is dementia that I want to focus on today. I’m sure you’ve heard of it; it’s hard to find someone who hasn’t in some way been impacted by this horrid condition.

Your perception will change, your mind will change, most likely permanently, unless there is a significant leap forward in treatment sometime soon. 

What you think is real will change.  

You may become convinced that you are your younger self once again, tying your shoes for school each day within the care facility, patient, caring nurses and assistants looking on. 

Your world could become one of anger, of hatred. Paranoia could spark rage that you didn’t know you were capable of, and in that blind unforgiving place within you, you could become hostile. People who care for you might become scared of you, unwilling to assist you in the daily activities (like showering) that you can no longer do yourself.  

Or maybe, you stare placidly out of a window, sitting in your favourite seat. Bathed by the sun, with your favourite blanket draped over you. A soft, sad smile on your face as the world passes by and you see…something. 

No one knows what you see, no one can glimpse behind your eyes and look through them; it’s impossible. You might see nothing, merely colours and blurred shapes, as the Alzheimer plaques denigrate your occipital nerves. You might see the world of your past, a loop of pictures and people from your childhood, all replayed for you again and again. 

Do either of those realities exist? 

Not to most people. Those of us lucky enough to exist in a neurotypical world all perceive similar things. Sure, that colour might be aqua to me and green to you, but we can both agree it’s blueish and greenish and a colour. 

But the realities that people with dementia experience can be vastly different, unrecognisably so. It can alter their personalities, their memories, everything about them.  

Does that make these differing realities less than our (mostly) shared one? 

Does it mean that we can ignore or dismiss those people who experience different worlds without consideration? 

No, I don’t think so. 

You may perceive a world that is out to get you. A world where your worst memories and greatest fears exist and seek to hurt you. This world may change you, make you aggressive, and make you lash out. 

Are you to blame for this change in personality? Can it be considered your fault that what you now believe is real, is only real for you?

It’s not intentional.

Reality exists outside of us (okay, that is a philosophical statement and there are arguments for and against it) but in the end, our brains are what perceive the outside world and are what filter it into the things we recognise. 

Your brain is physically changing and with that change comes an altered reality.

If reality is what we can touch, see, feel, taste, and hear, then one persons reality is as real as anyone’s.

And just because the reality some people perceive is different, regardless of illness, doesn’t also mean that it’s less. 

It doesn’t mean that it can be ignored, that the fear a person might be feeling isn’t real, even if you can’t comprehend the source of it.

The fear, the emotions, whatever they may be, are real to that person. Just as real as your emotions are real to you.

If you get dementia, and I truly hope you never do, if I were your carer or nurse, does that mean I can ignore you? Do the bare minimum and leave you with improper care and the inability to care for yourself? Would you be comfortable with me ignoring what you say as incoherent rambling, ignoring for example the fact you can see someone at your window, someone from your past who terrifies you?

Or would you like me to listen to what you say, take it in, treat it seriously, even if I can’t see whatever it is that’s there.

If you were enjoying listening to a certain song, but only this song, played again and again and again, but to you every time is like the first time, would you understand if I turned it off because I was sick of hearing it? When I could just as easily turn it down, or find someway (like headphones) for you to continue to enjoy it?

Dementia is insidious. It doesn’t just impact the person who has it, it can slowly degrade even the best intentions in the people around them. It’s a condition that, if you’re around it, you need to be constantly on guard from the way it may trick you into thinking someone is lesser than yourself, that their reality is not worth considering.

Dementia means that I need to work harder and find a way to connect with you.

I need to find a way to help you maintain your sense of self, of who you are. I need to do whatever I can to help you keep your dignity intact.

It means I need to respect your reality, whatever that may be.

Further Reading

alzheimers-facts-and-figures.pdf

Respect for Autonomy (alz.org)

Preserving the Dignity of a Person With Alzheimer’s Disease (crisisprevention.com)

https://www.who.int/news-room/fact-sheets/detail/dementia

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