One of the most distressing symptoms of Lewy body dementia can happen in the most familiar place, with the person they might be closest to.
A husband looks at his wife and believes she is not really his wife. A mother becomes convinced her daughter is an imposter trying to take her home. Someone may look right, sound right and know details that only a loved one would know, but still feel wrong.
Capgras syndrome is a delusion of misidentification in which a person believes that someone close to them has been replaced by a double or imposter. In Lewy body dementia, it can occur alongside its typical hallucinations, delusions, changes in perception and the fluctuations in attention and understanding.
For those experiencing Capgras it can be terrifying and deeply confusing. For their loved ones, it can be devastating.
Families affected by Lewy body dementia often describe the same bewildering experience:
“My mum thought my stepdad was an imposter and trying to steal her money and house. It was so distressing for her and us. Such a cruel illness,” said Gemma.
Capgras can be particularly difficult when the person being misidentified is also the main carer. The person with Lewy body dementia may become frightened, suspicious or resistant to care from the very person trying to help them.
Rob Garrett, whose partner Jayne Gater had Lewy body dementia, has described how Jayne’s experience changed over time. At first was confusion about who he was. Eventually Jayne became convinced that the “other” Rob was a dangerous person.
“She thought that I killed nice Rob,” he said. “She thought that I’d taken the house. She thought I was trying to kill her. It is more distressing for the person living with LBD, as it is so frightening for them.”
Some people do not believe a person has been replaced, but believe there are several versions of the same person.
“My dad doesn’t seem to replace people but he duplicates. He will say there are more versions of the same person,” Amy said.
Margaret’s experience was similar: “My husband had Capgras syndrome. He was a textbook example. His confusion was only with me though. He thought there was two of me. He would ask where was that other Margaret. She was the one who was just like me, but wasn’t me.”
Capgras can involve pets as well as people.
“My poor dad was in earlier stages of Lewy body dementia. He believed that his dog had been replaced by another dog, which wasn’t as nice and friendly as the original one,” said Laura. “It was so hard to say that wasn’t the case, as he just wouldn’t believe me.”
Jacqui Cannon, chief executive of the Lewy Body Society, said: “This is one of the painful realities of Capgras. The belief may not be changed by explanation, however calmly or lovingly it is given. The person with Lewy body dementia is not choosing to be unkind or unreasonable. The disease can affect how the brain processes visual information and how it interprets what is happening. Someone may recognise a face, but not have the usual feeling of familiarity, trust or emotional connection.”
Due to fluctuating insight a person may be convinced and frightened during an episode, then realise later they have been wrong.
“My father has these episodes,” said Ben. “He often believes his wife of nearly 50 years is an imposter. And that other people are in his home trying to scare him. He becomes very distressed during these episodes. When they pass, he knows something has happened and is very confused by it, and needs to talk about it and asks lots of questions.”
Knowing how to respond is not easy. The first priorities are to reduce distress and keep everyone safe. If the belief is fixed, trying to prove the person wrong may increase their fear. It may help to respond to the feeling rather than the detail: “That sounds frightening”, “You’re safe”, “I’m here with you”, or “I’ll help.”
Some families find that a familiar voice helps more than a familiar face. Speaking before entering a room, calling from another room, using familiar phrases, or wearing recognisable clothing may help being more recognisable. Others find that briefly leaving and returning can change the situation.
Distraction may also help. Making a drink, moving to another room, putting on familiar music, looking at photographs, folding laundry together, feeding a pet or going for a short walk may gently shift attention away from the frightening belief.
A shared sense of humour can sometimes work. When Graham’s wife asks: “Which Graham are you?” his response is: “The nice one”. “It usually gets a laugh,” he said.
Margaret suggested a similar way through. When her husband asked about “the other Margaret”, she told him that he knew he did not need more than one of her, and probably could not handle two. “He would laugh and that satisfied him. People make this way too difficult trying to explain everything to them and straighten them out. They can’t help it and it is much easier just to find out what satisfies them and let it go.”
Jacqui Cannon said: “Lewy body dementia is not just memory loss. It can change how a person sees the world, how safe they feel within it, and whether the people closest to them still feel familiar. Understanding that can make a frightening symptom a little less lonely. Being feared, rejected or accused by someone you love is not a small thing. Carers need support themselves.”
A sudden increase in confusion, hallucinations, delusions or misidentification may be linked to infection, constipation, dehydration, pain, poor sleep or medication changes instead, so do seek medical advice. Some medicines may help some people with Capgras or other delusional symptoms, but people with Lewy body dementia can be very badly affected by certain drugs, particularly some antipsychotics.
More information about managing delusions and misidentification in Lewy body dementia here.
