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Dignity comes first

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communication, dementia awareness

"Write down what we need, we are having a lot of guests over – we need a sack of rice, make sure you get the good one!" said my grandad.

“No problem,” I said.

"I am not talking to you, silly, I am talking to your dad." My grandfather laughed as he weakly pointed towards my 'dad' whom he confused with one of the machines surrounding his hospital bed. By that time, his dementia had progressed significantly, though his hospitalisation had nothing to do with dementia at all.

Although this snippet of conversation seemed odd and even though, of course, there were no guests coming over – I knew that he was absolutely and undeniably himself at that moment.

Evidently, personality changes are often seen in people living with dementia, but one must not forget that human beings are animals of habit and studies have shown that in dementia long-term memory remains often intact, despite the loss of short-term memory. How is that possible?

A lot of times the underlying cause for dementia affects the hippocampus inside the brain and since researchers pointed out that most of the short-term memory is based within the hippocampus whereas long-term memory can be found in the cortex of the brain, it makes perfect sense that long-term habits and long-term memory define the personality in these cases.

Interestingly, my grandfather held get-togethers since his teenage years and was always in charge of organising and planning the logistics, as well as the meals. The fact that he might have been confused about the reality of where he was during our above-mentioned conversation, does not warrant the assumption that he was confused about everything and thus not to be taken seriously.

In fact, studies suggest that it is crucial to engage positively and patiently instead of undermining the intelligence or correcting wrong statements of people living with dementia. Meaning, respecting and upholding the dignity of people with dementia is the best and most efficient way to create a healthy and comfortable environment. It is especially important to remember that even though, people with dementia often return to their childhood memories or early years, it does not mean that people who communicate or deal with them should infantilise them or ignore their input or diminish their thoughts and words.

Experiencing my grandad living with dementia has taught me that comparing people with dementia to children is wrong, my grandfather was a child when he was a child, then he grew up, he grew older and at some point he adapted to a life with dementia. Ultimately this means that all his achievements and all his growing up and all his wisdom was within him, right down to his very last moment and beyond. Living with dementia does not define a human being, but I strongly believe that how we, as people and a society, respect the dignity of people with dementia, does indeed define us.


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