SOLIHULL, United Kingdom — A woman who thought her husband might be having an affair after he became withdrawn discovered he was actually displaying the signs of early-onset dementia. Emma Ruscoe says she started noticing subtle signs that there was something wrong with her husband, Simon, in his early 50s.
Emma says her husband stopped wanting to go out with friends and was withdrawing himself from her — to the point she thought he was having an affair. After a vacation to Greece in August 2016, Emma says Simon became argumentative and started forgetting conversations.
Simon’s wife took him to their doctor who then referred him to a memory clinic, but it was difficult getting Simon to an appointment. Emma went back to the doctors in March 2018 and again was referred to a memory clinic. Simon was seen in June 2018 and received a letter saying he did not have dementia.
After three-and-a-half years, however, Simon’s condition continued to deteriorate, and doctors diagnosed him with dementia in January 2020.
“I noticed a change in his behavior at the end of 2015,” says Emma in an online video. “Simon stopped wanting to go out with friends, he didn’t want to go out and socialize. He became very reserved, and I noticed he was withdrawing more and more to the point I thought he was having an affair.”
“When he received the diagnosis, I felt a sense of relief,” the 55-year-old continues. “I knew something was wrong and I was battling for so long – nobody believed there was anything wrong with him.”
Scroll down to see why apathy could be the first sign of dementia
Simon’s symptoms started showing 8 years ago
Towards the end of 2015, Emma noticed her husband’s behavior started to change. The wife and mother says Simon would start taking wrong turns when they went on familiar drives. The turning point was their vacation to Greece with their two sons – Alex, now 26, and Oliver, now 21.
“When we got back from holiday, we went to our GP. Simon got referred to a memory clinic but he was constantly missing appointments. After two years of battling, we went back to the doctors in March 2018 as he still didn’t seem right,” Emma says.
“We got an appointment at the memory clinic in June 2018, we were fobbed off. There were no tests, we spoke to a psychologist, and he told us that Simon was stressed. We received a letter saying categorically that my husband didn’t have dementia.”
Concerned by Simon’s deteriorating behavior, Emma went back to the doctor and was referred again to the memory clinic. The pair went to a few appointments where Simon was assessed and in January 2020, he was officially diagnosed with early-onset dementia.
“I can’t fault my GP as they did refer us to the memory clinic, but I think they should also be sign-posting people to the Alzheimer’s Society,” Emma adds. “We would have gotten so much advice and support. I did feel a huge sense of relief, from my point of view, I knew there was something wrong with him. It was nice to get an answer after battling for so long, once I got the diagnosis, I knew what I was dealing with.”
‘It is a living grief’
Soon after Simon’s diagnosis, the United Kingdom went into lockdown. Emma notes it was “hard” to look after Simon, but they adapted.
“From my point of view lockdown was hard. He was in the mild stage of the disease. But what lockdown meant for me is I was able to work from home so I could get Simon to do his own personal care,” Emma explains. “We have to stand with him, but he does it on his own. It’s gone from asking him to cut the lawn 12 months ago to now him not being able to do anything on his own.”
“What makes it easy with Simon is that he is a lovely person, and the dementia has not changed that. I read about Fiona Phillips, and she has the right philosophy, you have to carry on as much as you can.”
Emma says she hopes that Simon will continue to be cared for at home but admits she doesn’t know what the future holds.
“Reading the prognosis, he probably will go into a home, but we will fight that every step of the way – I would prefer him to be at home. I have two boys that live at home, my mum lives down the road and she helps out when she can. I am looking for a personal assistant to give us a break and give Simon some independence. It is a living grief – you watch that person deteriorate. We have been together for 31 years,” Emma says.
“Watching the person, I have grown up with disappear is heartbreaking. On bad days it feels like my heart is being ripped out but on good days I think I am lucky that he is still here. He is my soul mate – the love of my life and he always will be.”
South West News Service writer Ben Barry contributed to this report.
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Apathy can signal the onset of dementia years before other symptoms appear
Just like in Simon’s case, a 2020 study found that feelings of apathy can predict if someone will develop dementia years before symptoms like memory loss ever appear.
Researchers from the University of Cambridge explained that frontotemporal dementia is one of the leading causes of dementia in younger patients. Doctors typically diagnose the condition in patients between 45 and 65 years-old. This form of cognitive decline can also affect behavior, language, and personality. Patients can begin to act more impulsively and engage in inappropriate or compulsive behavior.
One of the common threads in frontotemporal dementia cases is patients become apathetic, losing interest in things they normally do. Researchers say this isn’t depression, even though physicians may mistake it for another condition.
The study found frontotemporal dementia is triggered by shrinkage in particular regions in the front of the brain. The worse the shrinkage gets, the more apathetic patients become.