When the coronavirus pandemic hit in March 2020, Kevin Jones was faced with a heart breaking predicament.
Kevin’s wife of 30 years, Jean, was living in a care home with dementia. With Wales suddenly going into lockdown, the pair were forced apart for the first time in their marriage.
“On Sunday, March 22, 2020, I was with Jean when the care home manager visited us,” Kevin said.
The pair were told then and there that the home was going into lockdown and Kevin would need to leave.
“Jean didn’t understand what was happening. I explained that I had to leave but would see her again as soon as I was allowed back into the home.
“I told Jean how much I loved her and cried my heart out as I had to leave her. This is the first time we had ever been separated in 30 years. I was utterly distraught because I knew I might never again be with the woman I love.”
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According to the NHS, there are currently an estimated 850,000 people in the UK living with dementia. In Wales, that number stands at about 50,000 people, and 1 in 5 people over the age of 80.
It is also one of the leading causes of death in the UK.
According to Office for National Statistics (ONS) figures for England and Wales, as reported by The Times, in 2020 there were more recorded deaths due to dementia among women than deaths due to Covid-19.
While coronavirus and heart disease were the leading causes of death for men, followed by dementia and Alzheimer’s in third place, for women dementia and Alzheimer’s was the overall leading cause of death.
Kevin Jones describes his wife Jean’s experiences with dementia and the impact it has had on their lives
(Image: Alzheimer’s Society)
“I want to talk about it, I think it should be put out there so people can understand and realise what it’s about,” said Kevin, discussing the impact dementia has had on Jean and on him.
One major issue, he believes, is that dementia isn’t discussed with the urgency it requires and with the same level of public interest as other illnesses.
“For some reason, to me personally, dementia doesn’t seem to be up there [in terms of priority].”
Jean and Kevin met on holiday in Lanzarote in 1990. According to Kevin, they were almost immediately inseparable.
“Believe it or believe it not, it was love at first sight,” said Kevin.
Jean and Kevin loved travelling together before Jean’s diagnosis, going on world cruises and exploring much of Europe
(Image: Alzheimer’s Society)
From that moment on, the pair did most things together. Jean, from Newport, joined Kevin in his hometown of Wrexham, and they spent much of their free time travelling and exploring the world for the next two and a half decades.
However, in 2016, everything changed for the couple almost overnight.
“Unfortunately in late 2016 Jean’s health started to deteriorate. After numerous hospital appointments, brain scans and consultant appointments, Jean was diagnosed in 2017 with dementia, with lewy bodies and Parkinson’s,” said Kevin.
“The speed of Jean’s dementia was very worrying and despite medication her dementia continued at a pace and was not able to be slowed or prevented.”
Kevin began nursing Jean at home for a while, but the quick deterioration of her health meant that, in June 2018, she moved permanently into a care home.
“I visited Jean every single day without fail, to support her and help her in any way I could,” said Kevin.
“The most important thing for me [was] I was with the woman I love every day.”
However, the pandemic and subsequent lockdown in March 2020 meant that this suddenly became impossible for Kevin.
“I was devastated, physically and mentally isolated, and suffered with anxiety and depression. I was empty inside with no hope,” said Kevin.
On top of that, in June, Jean tested positive for coronavirus. Although she made a full recovery, the anguish of not being able to see his wife and be with her during the lockdown took its toll.
For a while, beginning in August 2020, Kevin was able to see Jean again for the first time in five months, albeit through a pre-arranged visit through the window.
“I waved and shouted to Jean through the window, but she was lost and bewildered,” said Kevin.
“I cried and told her how much I love her. I hoped that my voice or maybe the sight of my face might make some difference.”
The visits were a mixture of emotions for Kevin, who felt emotionally exhausted every time while simultaneously being happy to be in the company of his wife. It was, he said, an isolating experience.
Kevin wants to see more public awareness of dementia
(Image: Alzheimer’s Society)
Luckily, Kevin was given a “lifeline” when the Alzheimer’s Society reached out to him and asked after his welfare. He was paired up with a companion caller and, ultimately, joined a support group on Zoom for people going through similar experiences.
It is here, in these groups, that Kevin realised just how many people, but especially other men caring for their own wives, were in a similar situation to him.
“On these Zoom calls, believe it or not, it’s nearly all men… My sort of age group, who have nursed their wives,” said Kevin.
“On the flip side of that, there are women on the Zoom calls, but the majority of them are caring for their mums.”
He added: “If you go to the care home, I can only talk about Jean’s care home, but there are 62 residents in that care home and they’re nearly all women.”
For carers like Kevin, the most important thing is to raise awareness about dementia.
“If we can get this awareness out there so that people realise how serious and debilitating this disease is,” said Kevin.
Today, Kevin and Jean are still able to see each other when Kevin visits the care home she lives in. However, sadly, Jean is no longer able to speak or recognise her husband.
“Although I’m heartbroken, I have to leave after 15 minutes or so as every visit leaves me on my knees,” said Kevin.
“I leave in a flood of tears and I am absolutely in shreds. I then come home to an empty flat and the loneliness and isolation hit me again. I sit in one of the chairs and just cry. I miss Jean so much and I grieve for her every single day.”
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Although dementia can affect anyone, more women are diagnosed with the disease.
According to Alzheimer’s Research UK, 61% of people with dementia are women and 39% are men.
“We think this is to do with an interplay of factors,” said David Thomas, head of policy at Alzheimer’s Research UK.
“Part of this is social factors, and differences between men and women with things like drinking or exercise that account for this, which is part of it. But we do think there are biological reasons for it as well.”
One obvious factor, said Mr Thomas, is the fact that women tend to live longer than men on average. In addition to this, there are also studies into the impact of different hormones on the risk of developing dementia.
In addition to being more likely to suffer from dementia, women are also more likely to take on the burden of caring for people who suffer from the disease.
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“The cost of caring tends to fall on women as well, so that’s another area. As well as being more at risk of contracting dementia, women tend to take on that caring, often unpaid caring, role,” said Mr Thomas.
He added: “The first thing I would say, we need a much bigger focus on prevention. A lot of people don’t appreciate that there are a lot of things that you can do to reduce your risk of dementia. It’s well understood with things like heart disease and diabetes that lifestyle will have an impact, but there is less understanding of what we call ‘brain health’ and how we look after brain health. So, we need a much bigger public health focus on that side of things, and much more awareness about some of the steps you can take to reduce your risk.
“I think the other element is that we need treatment. A big challenge in this area is that there are no treatments available to slow or stop or cure the disease. There are some very old treatments which can help with the symptoms for a time, but we haven’t had any new treatments for about 20 years. At Alzheimer’s Research UK we are calling for more investment in research aimed at finding those treatments that could help people across the spectrum of dementia.”
Sue Phelps, country director for Wales for the Alzheimer’s Society has also called for more focus on research and the development of treatments for dementia.
“Dementia is a life-limiting condition and there’s currently no cure. There are 50,000 people living with dementia in Wales. It is only through research that we can understand what causes dementia, develop effective treatments, improve care and one day find a cure,” she said.
“People with dementia have been worst hit by coronavirus in terms of deaths – over a quarter of people who died from the virus had dementia and tragically there’s been an additional huge unexplained rise in dementia deaths beyond those who’ve died from the virus.
“Women living with dementia outnumber men two to one across the world. Dementia also affects women differently, with symptoms like delusions, depression and reclusiveness experienced more widely in women than men. With an ageing population, no approved treatments to slow it and an overstretched social care system, we need to take urgent action to tackle dementia in Wales.
“We need to boost investment into research for treatments that can slow or prevent dementia. Medical progress has saved and improved the lives of thousands of people with heart disease, stroke and cancer. Now it is time to see the breakthroughs in dementia that work for both women and men too. The pandemic has hit research funding hard and stalled progress. We need public support now more than ever to help us continue our ground-breaking research that will make a world without dementia a reality.”
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