How dementia diagnoses can pose difficult questions about our identity

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Neurologist Jules Montague has written a book about memory and identity and what happens when they come under threat. Chris Bond speaks to her.

It was a question from a friend about her mother who had been diagnosed with a brain tumour that led to Jules Montague writing her book.

Jules Montague is to speak at the Bradford Literary Festival

Jules Montague is to speak at the Bradford Literary Festival

“My friend’s mother had started tearfully telling the family that she loved them, which she had never done before and my friend asked me if this was really her mother and did she really mean these things and I said ‘yes’,” explains Montague, a leading consultant neurologist.

“But later on I wondered if I’d been honest with her because if her mother had become a nastier person I would have probably blamed it on the brain tumour.

“So although I hadn’t planned to write a book I wanted to look at that question a bit more honestly and through my neurology career it was a question that kept arising.

“Someone would say their husband had Alzheimer’s and he’s become very difficult but is it really him?

“And there was another patient, Anita, who I talk about in the book who asked, ‘Am I going to be the same person?’”

It’s these questions about identity and what happens when our minds misbehave that Montague explores in her book, Lost and Found, which she’ll be discussing this week at the Bradford Literature Festival.

“In our convention medical textbooks there’s no answers to these questions and I was flummoxed when people used to ask me them in my clinic.”

Through her medical work, past research and by speaking to patients she looked at how our minds work.

“One of the answers I found, talking about dementia, is that we are more than our memories,” she says.

“This idea that we suddenly lose ourselves if we develop memory loss I don’t feel is true.

“Certainly in the mild and moderate stages of Alzheimer’s people can live well.

“As doctors, we tend to ask patients what’s missing rather than focusing on what remains, and as much as possible I try and tell my patients to continue living as they have been living.

“It’s about trying to not be defined by your diagnosis.”

Montague draws on philosophy as well as science in her book.

“It’s not a world I go into often, but I use the concept of embodiment which is the idea that it’s not just that we have bodies but we are bodies, and we live through our experiences, and so I would say don’t be defined by your memories there are many other things that define who we are.”

She says there is still much we don’t know about how the brain works.

“The perception is that if you have some kind of brain disorder then all is lost, but incredibly in some brain conditions you get this flowering and this release of talent which goes against all your intuitions.

“There are certain types of dementia whereby there’s a kind of visual release and people who’ve never been artists or painters suddenly start to produce works of art.”

She says it appears talents that may have been previously “suppressed” by the brain can be released as a result of the effects of dementia on the mind.

“That goes against our intuition that loss of brain function equals loss of ability,” she says.

In the book she includes some remarkable stories of hope against all the odds.

“It is filled with hope, hence the title. Sometimes as a doctor the more you know, the more you don’t know and I didn’t expect that by starting with that story about Anna and her mother’s brain tumour that I would end up in such a place of hope, but that’s what ended up happening.”

Jules Montague is appearing at the Bradford Literature Festival on Sunday, July 1. For details go to