Imagine looking at your loving partner of many years and suddenly having the creeping suspicion that it was not, in fact, your husband or wife, but someone pretending to be them and, worse still, no one else believes you.

Becoming convinced that the person who loves you most and who is taking care of you in your hour of need is actually out to get you: this was the terrifying experience of Jayne Gater, and many others living with Lewy body dementia.

Capgras Syndrome is a condition in which someone believes that their loved ones or others they know have been replaced with a double or imposter.

Rob Garrett, 60, witnessed his partner’s health deteriorate over a decade. After a traumatic incident, he saw Jayne develop anxiety, vision and memory problems as well as sleep disturbances and fainting episodes. She began to become emotional in the evenings and struggled to make a cup of tea because of her vision problems.

There were occasions where she refused to cooperate with doctors and as time went on hallucinations increased to the point where Rob covered up all the mirrors in the house to prevent distressing Jayne. He had begun to suspect she had some form of dementia and online advice had suggested doing it.

Although Jayne was presenting with many symptoms of Lewy body dementia, her paranoia and difficulty in understanding she was ill made it very difficult to get her seen by GPs or cooperate while in hospital to enable her to get a proper diagnosis.

Even more distressing for Rob who has taken redundancy to care for Jayne were the times when she not only did not recognise him, but was convinced he was someone pretending to be her husband.

Rob said: “We were out for a drive one day and she was talking to me about Rob. I asked her how long she had been with Rob, and she said ‘Oh quite a while” and we talked about why ‘they’ had never got married and how nice he was and then she realised her mistake and say ‘Silly me, you are Rob!”

“Over a period of five days that went from me being ‘nice Rob’, to not knowing who I was and being confused, to this ‘Rob’ who was a terrible person.

“She thought that I killed nice Rob. She thought that I’d taken the house. She thought I was trying to kill her.”

Rob was finding it hard to cope and was unable to sleep, the family had also seen Jayne’s paranoia and fears.

“I don’t know who he is”

However, when a couple of friends turned up at the house unexpectedly, Jayne spoke to them as if there was nothing wrong with her but did tell them: “It is him. He needs to go. I don’t know who he is, but he’s killed Rob, I want him out of my life.”

“She didn’t know who I was, but knew exactly who they were,” said Rob.

On another occasion, to persuade Jayne to come with him to pick up her diabetes medication, Rob resorted to suggesting they might see ‘nice Rob’ there.

It was fortunate the staff already knew the couple because in the queue, Jayne began hurling more terrible accusations: “He’s following me, he is trying to take me away, he stole my house.”

Rob said: “It was at that point the staff looked at me and said we’ll ring the doctor. I was relieved when they said she needs to get to a hospital, but she absolutely was not going to leave the pharmacy with me.”

While the staff waited with Jayne, he went to get the car and as she continued to refuse to get in, Rob had to say heartbreakingly to his partner of 30 years: “I’m going to take you to a place which is safe and you’ll be well looked after and you’ll never, ever see me again. I’ll be out of your life and hopefully you’ll see ‘nice Rob’ again.”

After being admitted for Capgras syndrome, Jayne was finally diagnosed with Lewy body dementia and was cared for by Rob until her death aged just 59 some 10 years after her symptoms began.

Jacqui Cannon, of Lewy Body Society, said: “It can be particularly difficult if it is the person offering support who is being misidentified and not being trusted.

“Although Capgras syndrome can be very upsetting, it is important to accept this is part of the condition and is not personal or malicious.

“There are medications that can help some people experiencing Capgras but not all.

“If the person with Capgras has some insight, it may be possible to question or challenge the delusion. However, if the idea seems quite fixed, do not increase their distress by trying to reason or persuade them of the reality.”

More tips on how to cope with Capgras Syndrome

Please sign and share our #LewyList petition today and join us in advocating for meaningful change for those impacted by LBD.