Why we shouldn’t buy in to the ‘tragic narrative of dementia’

Dementia is not a dirty word. And yet many of us fear developing it or engaging with a loved one who has it. It doesn’t need to be this way, says Australian aged-care specialist and educator Rose Capp.

Capp’s new book Demystifying Dementia: Everything You Need to Know delves into some common misconceptions surrounding the disease.

Dementia worry was on the increase, she told Afternoons.

“Dementia worry is a bit of a recent phenomenon, and very much a Western phenomenon too, and so I talk in the book about how if we mislay something, or forget someone’s name we instantly think ‘oh gosh’ and catastrophise that immediately.”

This was not helped by the “tragic narrative of dementia”, she said.

While dementia was serious, people living with it could have a good quality of life and using alarmist language was not helpful, she said.

“We tend to use a lot of alarmist words, in terms of public discourse about dementia. So, people are sufferers, they’re victims. There’s some pretty awful phrases and euphemisms we use about people; they’re ghosts, they’re no longer there.”

Certain myths surrounding dementia persist, she said, for example that it was a normal part of ageing.

“It’s not, you’re more at risk of developing dementia as you get older, after 65, but it’s certainly not a normal part of ageing. You might have a little bit of forgetfulness as you get older and that’s really normal but dementia itself is not a normal part of ageing.”

Dementia and Alzheimer’s were often incorrectly used interchangeably, she said.

“Alzheimer’s is a form of dementia, but in fact there are over 100 forms of dementia of which Alzheimer’s is the most common.”

As dementia advanced, it could seem as if the person was no longer there, she said.

“One of the key messages I really want to get across is that the person is still there. Even if we can’t always understand what they’re saying, or if they’re unable to communicate. That doesn’t mean that the essential idea of that person is no longer there.”

Carers should try to support the person living with dementia, Capp said.

“My central advice in terms of effective communication and supporting identity, and supporting the person is to go with the flow.

“If somebody has clearly shifted back in time, they believe they’re younger, they might be asking for their parents, it’s really important that we tap into where they are. We don’t want to contradict someone and just say, ‘but your mother died 10 years ago’, that’s the worst possible response, because that could just be distressing.

“If they haven’t remembered that that’s happened, that just makes the person distressed all over again. But what we do want to do is kind of tap into where they are at that moment, and whatever emotion is being expressed.”

Follow their conversational thread, she said.

“That’s not always easy, because sometimes they may not be able to articulate that clearly. But really the onus is on us to try and respond to that person.”

Memory is rarely completely lost, she said.

“There’s explicit memory, that’s the recall we have of particular events. But there’s also implicit memory, an example would be the kind of automatic or unconscious memory of things. So, once we learn to ride a bike, we retain the memory.”

While a person with dementia might not be able to recall an event explicitly, they might retain an emotional thread to it, she said.

“They went to a family member’s wedding the week before, they may not explicitly remember that, but they might retain the positive emotions associated with that event.”

Instead of correcting someone with dementia when they forget a name, it is better to introduce them in the first place, she said.

“Our aim should be to validate and support not contradict.

“If you’re bringing family members in, you just introduce them, you say ‘here’s your grandson’, ‘here’s your granddaughter’ use their names and make sure that that’s clear. So, there’s no embarrassment, and you’re supporting the person, you’re not challenging them.”

Constantly trying to prompt memory might have the reverse effect, she said.

“It might mean that the person feels less confident, might withdraw, might decline to go out with family, because they’re worried about not being able to remember family members names or other details.”

There were things we could do to make dementia less likely, she said.

“We know now that things like diabetes, being overweight, smoking, having high blood pressure, not exercising, having an unhealthy diet, all those things increase your risk of developing dementia.

“So, all those general things you do to keep physically healthy are also going to be really important in terms of reducing your risk of dementia.”

And if you are a Suduko fan, keep it up, but try to master new hobbies, she said.

“What we want to do is constantly challenge our brain to learn new things make new neural connections on pathways.”

According to the news on Radio New Zealand

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