'How I reversed my memory loss from overlooked brain condition’

In 2021, Suzanne was troubled to find that she was getting increasingly forgetful, despite only being in her fifties.

She was sometimes unable to find the right word, would forget why she had gone into a room and struggled to cope in her volunteer work for a disabled children’s charity.

“I was attending meetings, and I was finding it really difficult to concentrate and take in what everyone was saying,” she said. She stopped most of her work and even gave up on trying to read books.

Suzanne’s GP suggested she might have brain damage caused by a recent Covid infection that had affected her badly for several weeks, and she was referred to a neurologist.

But the neurologist, Dr Verónica Cabreira at the University of Edinburgh, had surprising news. In fact, Suzanne had a condition that can mimic dementia, causing forgetfulness and difficulties in concentrating, but has a much better prognosis – and can even be reversed.

The condition is called functional cognitive disorder or FCD. While it is still poorly understood, FCD seems to arise when factors such as stress or anxiety cause the normal memory process to go awry. It is similar to the way that anyone can have a temporary memory problem if they “go blank” under pressure.

Unlike dementia, FCD isn’t due to any loss of brain cells, but could be thought of as a psychological glitch. And, as stress and anxiety can be triggers, distress over the memory problems can worsen the symptoms, in a vicious circle.

“You lose confidence in your memory and start to notice everything going wrong in greater detail,” said Suzanne. “You start checking and double checking everything you do for mistakes – that becomes exhausting in itself. So you forget more things, and that feeds the negative feedback loop.”

Once Dr Cabreira explained this, it was like an epiphany, said Suzanne. “I didn’t realise that, subconsciously I was doing exactly that.”

When neurologists suspect that someone has FCD, they start trying to rule out real dementia or brain damage, by ordering brain scans and doing various other tests.

Happily, Suzanne’s scan results showed that her brain was in good condition – in fact it had the appearance of someone slightly younger. “It was reassuring to know that there was physical evidence that there wasn’t any brain damage going on and brain shrinkage,” she said.

The other intervention was to stop Suzanne unconsciously causing the memory problems, by spending so much time thinking about them and constantly checking herself.

Some doctors do this by teaching patients psychological techniques for diverting their attention away from their memory and relaxation therapies. Suzanne was able to use a new phone app developed by Dr Cabreira.

The app teaches breathing exercises as well as “grounding” techniques that bring someone’s attention to the present moment, to stop them from spiralling into unhelpful thought patterns. The app also has teaching modules about the causes of FCD.

Suzanne also had talking therapy, and has started practising meditation, both of which have helped her cope with sources of stress in her life. Together, the methods have got rid of the memory problems caused by FCD and she has returned to work.

Suzanne’s situation is complicated by the fact that she also has a liver condition called primary biliary cholangitis, which causes chronic fatigue and pain, among other symptoms. When she is feeling tired, this can make her forgetful. In fact, this might have started her downward memory spiral in the first place.

“Whilst I still have memory lapses, what I know now is that they are connected to my chronic fatigue. But the FCD has gone away. My memory was definitely better even after just six weeks of using the app.” It has also reduced her pain and helped her sleep better.

Suzanne hopes that other people would not be put off from trying psychological techniques to improve their health.

“People need to understand that a psychological thing can have physical impacts, that it’s real, that you feel it, and that you are not consciously aware of why it’s happening to you,” she said.

“What you can do psychologically is address it and learn how to make it better.”