I’m 53… I thought I had dementia but it turned out to be LIVER DISEASE. Jackie couldn’t recognise her husband – now she reveals the niggling symptoms she wishes she hadn’t ignored…
When Jackie Little began to have episodes of extreme confusion, which left her unable to recognise her family and wandering the streets at night, it left them devastated. After all, Jackie was only in her early 50s – surely too young for dementia.
But over a number of weeks, her symptoms got steadily worse.
The council business manager from Luton would find herself outside in her nightgown in the dark and rain, unable to find her way home as her family slept.
Her husband Paul had to lock her inside the house for her safety and hide the keys, and fitted cameras to monitor her movements. She wore a GPS watch so she could be tracked if she did go out, and a badge that contained contact details of her loved ones if she became disorientated or confused.
Jackie even forgot her parents had been dead for 20 years, and had to be told the devastating news of their passing over and over.
‘My husband, my kids – everyone was taken aback,’ says Jackie, 53. ‘No one knew what was happening. I couldn’t understand it either.’
In fact, what Jackie was experiencing was not dementia. Instead, her symptoms were a little-known complication of her long battle with a severe liver condition called autoimmune hepatitis.
Jackie Little would wander outside in her nightgown
The condition affects about 10,000 people in the UK and involves the immune system mistakenly attacking liver cells.
This can cause fatigue, itchy skin and joint pain, but many people have no symptoms, and only have the condition detected during routine blood tests. It can largely be managed by taking corticosteroids such as prednisolone, which dampen the immune system.
But if picked up late or left untreated, it can lead to serious, even life-threatening, side effects.
These include liver scarring – cirrhosis – liver cancer, enlarged veins in the oesophagus known as varices, which can prompt severe bleeding if they burst, and excess fluid build-up in the abdomen.
If the liver is so damaged it can no longer filter toxins from the blood, these can travel to the brain and trigger something called hepatic encephalopathy – the confusion Jackie had.
Professor Debbie Shawcross, professor of hepatology at King’s College London, says: ‘Autoimmune hepatitis is a well-recognised, but rarer, cause of chronic liver disease that has been on the rise since Covid – in some, the virus itself may have triggered it.
Jackie’s condition was considered serious enough to warrant a transplant. Jackie was put on the transplant list, and had the operation in April at Addenbrooke’s Hospital in Cambridge
‘It can often grumble on in the background, but when they develop symptoms it usually means it’s well established and causing problems with liver function.
‘Up to 80 per cent of people with liver disease have low-level cognitive symptoms such as poor sleep or problems concentrating. But more rarely, it can mimic dementia.’
Jackie was initially diagnosed with non-alcoholic fatty liver disease – build-up of excess fat in the liver – after a routine blood test in 2017. But further tests showed cirrhosis, so doctors carried out a liver biopsy in 2020 and diagnosed Jackie with autoimmune hepatitis. She was given prednisolone, and had regular scans and tests to monitor her condition.
Jackie says she felt fine until 2023, when she says: ‘I’d be exhausted just walking up the stairs. One day I had my regular endoscopy, came back into the clinic and didn’t recognise Paul. He seemed to know who I was, and he was holding my coat, so I decided it was OK to go with him.
‘The next morning, I thought he was a nurse. My family were showing me photos, but the only people I recognised were my uncle, my brothers and my son, Zachary. I didn’t recognise my stepchildren, Jack and Sophie.’
The clinic first put it down to the sedation for the endoscopy.
‘I wasn’t thinking about anything during these periods, and I was never frightened,’ she recalls. ‘Then my head would start to clear and I’d think, “Why am I here?” ’
The episodes might last for only ten minutes, and sometimes she could have four or five a week.
After several months, doctors realised it was Jackie’s liver disease triggering the symptoms.
She says: ‘They asked me to hold out my hands, and they were shaking, which is a sign that the disease has progressed and is causing significant liver dysfunction.’
Her condition was considered serious enough to warrant a transplant. Jackie was put on the transplant list, and had the operation in April at Addenbrooke’s Hospital in Cambridge. ‘When I woke up I knew it had gone,’ she says. ‘I’d felt for a long time my head was stuffed with cotton wool and everything was hazy. That vanished. It was like I’d had dementia and recovered.’
Jackie will need to take drugs for life to stop her body from rejecting the new liver and the transplant will not cure her autoimmune hepatitis. But the confusion is unlikely to recur. She says: ‘I can’t put into words how grateful I am. Now everyone’s back to their normal lives – including me.’
- For more information on autoimmune hepatitis and hepatic encephalopathy, visit britishlivertrust.org.uk.britishlivertrust.org.uk.
