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Wednesday, December 4, 2024

Doctors thought my ‘child-like’ husband was depressed…it was actually dementia at 38


When 38-year-old Stefan Tankov started to behave oddly in the autumn of 2022, doctors assumed it was caused by depression and type 2 diabetes

His wife, Sile, now 42, began noticing changes in his personality — he became emotionally withdrawn and ‘child like’, requiring her help for simple tasks like getting on a bus. 

Within six months he was doing things that were totally out of character, like stealing bottles of wine from local shops. 

It was only then that he was referred to a specialist who performed neurological tests that flagged a devastating diagnosis: young-onset dementia. 

Doctors thought my ‘child-like’ husband was depressed…it was actually dementia at 38

Following Stefan and Sile Tankov’s wedding day in April 2021 they were in their own bubble, but within two years everything started to fall apart

In September 2022, Sile, now 42, began noticing changes in Stefan¿s personality ¿ he became less emotional and 'child like' and even struggled to take the bus alone

In September 2022, Sile, now 42, began noticing changes in Stefan’s personality — he became less emotional and ‘child like’ and even struggled to take the bus alone

Sile, a secondary school teacher, first noticed Stefan’s personality change when he stopped asking her how her day was and instead asking what was for dinner.

He was unusually rigid about the time he ate his evening meal, after which he’d go straight to bed,.

She recalls his confusion when she’d asked him to take a bus to visit her in hospital. 

He struggled to keep a job became unusually withdrawn, repeatedly forgetting simple tasks his wife asked him to do. 

She assumed her husband was depressed, and booked a GP appointment for a check up. 

The doctor conducted tests that revealed he had type 2 diabetes, and concluded his symptoms were a combination of the disease and mental health difficulties.

‘We thought it may have been causing confusion but he didn’t improve,’ Sile said.  

‘Halfway through one doctor’s appointment, he got up and left. I had to bribe him with a McDonald’s to come back. It was like dealing with a child.’

It wasn't until Stefan started to steal wine from their local shop April 2023 that she took him to hospital where tests revealed his cognitive function was 'very low'

It wasn’t until Stefan started to steal wine from their local shop April 2023 that she took him to hospital where tests revealed his cognitive function was ‘very low’

Stefan struggled to keep a job and began working as a temp, he became withdrawn and repeatedly forgot simple tasks Sile asked him to do

Stefan struggled to keep a job and began working as a temp, he became withdrawn and repeatedly forgot simple tasks Sile asked him to do

The family decided to take Stefan to hospital where tests revealed his cognitive function was 'very low'. Doctors ordered MRI and CT scans with a full psychological report

The family decided to take Stefan to hospital where tests revealed his cognitive function was ‘very low’. Doctors ordered MRI and CT scans with a full psychological report

Six months later, in April 2023,  Sile noticed staff at a local shop getting ‘into a bit of a flurry’. Her husband walked up to her and informed her he’d been banned from the business. 

The shop owner had caught Stefan repeatedly trying to steal bottles of wine.

The family decided to take Stefan to hospital where tests revealed his cognitive function was ‘very low’. Doctors ordered MRI and CT scans with a full psychological report.

Following the hospital visit Sile cared for him at home for the next four weeks. 

She said: ‘One morning I found him about to put his hands on the hob, which was bright red, to see if it was warm. He’d wander off, walk in front of cars and stare at people. We stopped going out. He started vaping and was incontinent.

‘I don’t know how I coped. I was lucky I could take time off work, but needed to go back or we’d have no money,’ she added. 

Sile took her husband back to hospital where he received CT and MRI scans and a lumbar puncture before being given the devastating diagnosis of frontotemporal dementia — an uncommon type of the disease that causes problems with behaviour and language.

‘I was in complete shock…we were hoping to have a family,’ Sile said. 

Dementia is the UK¿s biggest killer, affecting around one million people in the country

Dementia is the UK’s biggest killer, affecting around one million people in the country

The charity estimates that over 70,000 people are living with young-onset dementia, where symptoms start before age 65

The charity estimates that over 70,000 people are living with young-onset dementia, where symptoms start before age 65

Dementia is the UK’s biggest killer, affecting around one million people in the country.

It is estimated that over 70,000 people are living with young-onset dementia, where symptoms start before age 65. 

It can cause a wide range of symptoms, especially in the early stages.

Young-onset dementia is also more likely to be genetic and in most cases younger people with dementia do not have any serious or long-term health conditions.

Unable to return home Stefan stayed at a care home before he was moved back to hospital, where he stayed for 11 months, with Sile only able to book hour-long visitation slots.

Sile found it ‘tough’ she never saw his room and had to deal with constant calls from social workers, consultants, psychologists and nurses.

Stefan finally moved into a ‘wonderful’ new care home in July, but things are still hard for Sile.

‘You don’t expect to find yourself buying soft toys for newborns because your 40-year-old husband has started chewing the teddy bears he needs to get to sleep and you’re worried he could choke,’ she said.

She claims that doctors told her in May that if he is still here in six months to a year, he will be doing well. 

Sile admits the ordeal has been isolating, while others are visiting their parents and grandparents in the care home, she is visiting her husband.

But she has had support from family, friends, colleagues and neighbours as well as Alzheimer’s Society, Admiral Nurses and eight weeks counselling with Rare Dementia Support. 

‘He’s happy in the home and I love being there with him, even if it’s just to get into the bed beside him and give him a hug. There are little signs that make it all worth it, like when he sings along to a song my brother wrote, or gives my hand a squeeze. If I say I love you, he’ll say, “I love you so much”,’ she said.

‘When I look back, those happy moments are the memories I want to have.’

The Alzheimer’s Society is asking people to share stories at alzheimers.org.uk/stories 

What is early-onset Dementia? 

Early or young onset Dementia (YOD) is defined as dementia which has been diagnosed under the age of 65.

 The common early symptoms of Dementia are:

  • Memory loss
  • Difficulty concentrating
  • Finding it hard to carry out familiar daily tasks, such as getting confused over the correct change when shopping
  • Struggling to follow a conversation or find the right word
  • Being confused about time and place
  • Mood changes

According to an NHS blog: ‘Unlike late onset dementia in which the commonest causes are Alzheimer’s disease, vascular or mixed dementia, YOD is more often due to rare causes, unusual presentations of the common dementias and genetic causes.’

Due to these rarer causes, the NHS say it can be harder to diagnose YOD, adding that there is often a delay in diagnosis. 

Following diagnosis, there should be a care plan in place which should set out what sort of care you, and people who care for you, might need.

Source: NHS 

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