Imagine waking up one day and not recognizing your own spouse. Terrifying, right? That’s exactly what happened to Jackie Little, a 53-year-old woman who thought she was losing her mind to dementia. But here’s where it gets even more shocking: it wasn’t dementia at all. Instead, Jackie’s baffling symptoms were caused by a severe liver condition called autoimmune hepatitis—a disease so stealthy, it often flies under the radar until it’s too late. And this is the part most people miss: liver disease can masquerade as dementia, leaving both patients and their families utterly bewildered.
Jackie’s ordeal began with episodes of extreme confusion. She’d find herself wandering the streets at night, unable to recognize her loved ones or even remember her way home. Her husband, Paul, resorted to locking her inside their house for her safety, installing cameras, and even giving her a GPS watch to track her movements. The most heartbreaking moment? Jackie repeatedly forgot that her parents had passed away 20 years prior, forcing her family to relive their grief over and over. ‘My husband, my kids—everyone was taken aback,’ Jackie recalls. ‘No one knew what was happening. I couldn’t understand it either.’
But here’s the twist: Jackie’s symptoms weren’t the result of dementia. They were a rare but devastating complication of autoimmune hepatitis, a condition where the immune system attacks the liver. This disease, which affects about 10,000 people in the UK, often lurks silently, causing symptoms like fatigue, itchy skin, and joint pain—or sometimes no symptoms at all. Many people only discover they have it during routine blood tests. While it can be managed with corticosteroids like prednisolone, if left untreated or detected too late, it can lead to life-threatening complications like cirrhosis, liver cancer, and hepatic encephalopathy—the very condition that caused Jackie’s confusion.
But here’s where it gets controversial: Could COVID-19 be playing a role in the rise of autoimmune hepatitis? Professor Debbie Shawcross, a hepatology expert at King’s College London, notes that cases have been on the rise since the pandemic. ‘In some, the virus itself may have triggered it,’ she explains. This raises a thought-provoking question: Are we seeing the long-term effects of COVID-19 on our organs in ways we’re only beginning to understand?
Jackie’s journey to diagnosis was a long one. Initially, she was told she had non-alcoholic fatty liver disease in 2017. But further tests in 2020 revealed cirrhosis, leading to a liver biopsy that confirmed autoimmune hepatitis. Despite treatment, her condition worsened in 2023. ‘I’d be exhausted just walking up the stairs,’ she says. One day, after a routine endoscopy, she didn’t recognize her husband, mistaking him for a nurse. These episodes, though brief, were terrifying for her family. Doctors eventually realized her liver disease was to blame, and her shaking hands—a sign of advanced liver dysfunction—sealed the deal: she needed a transplant.
Jackie underwent the life-saving surgery in April at Addenbrooke’s Hospital in Cambridge. ‘When I woke up, I knew it had gone,’ she says. ‘It was like I’d had dementia and recovered.’ While she’ll need lifelong medication to prevent her body from rejecting the new liver, and the transplant won’t cure her autoimmune hepatitis, the confusion is unlikely to return. ‘I can’t put into words how grateful I am,’ she says. ‘Now everyone’s back to their normal lives—including me.’
But here’s the lingering question: How many others are out there, misdiagnosed or unaware, suffering from a liver condition that mimics dementia? And could COVID-19 be silently fueling this rise? Share your thoughts in the comments—this is a conversation we need to have. For more information on autoimmune hepatitis and hepatic encephalopathy, visit britishlivertrust.org.uk.
