MY LIFE WITH DEMENTIA AT JUST 51
Three tell of torment after being diagnosed with illness at just 50
DEMENTIA will affect most of us in one way or another in our lifetime.
Whether that is through our own diagnosis or that of a loved-one, we usually associate dementia with people over a certain age.
For some families, however, dementia becomes a reality much sooner.
When dementia affects people under 65 years old, it is considered “young onset”. It is also referred to as “early onset” or “working age” dementia.
Dementia is a degeneration of the brain that causes a progressive decline in people’s ability to think, reason, communicate and remember. Their personality, behaviour, mood and co-ordination often deteriorates too.
Younger people generally experience similar physical symptoms to older people with dementia.
However, the impact on their lives can be significantly different.
Younger people are more likely to still be working when they are diagnosed. Many will have significant financial commitments such as a mortgage, children to care for and elderly family members to look after.
Debbie Williams, from Caerphilly, was diagnosed with young onset dementia in 2018 at the age of 50, though she had symptoms for a few years leading up to the diagnosis.
She is a mother of three children, all aged in their 20s, and lives with her husband Steve, 51.
Debbie, who worked at a school, recalled her experience leading up to the diagnosis.
“There were lots of things. I had been struggling with organising myself, forgetting things, but I couldn’t explain it,” she said.
“I struggled to remember simple things, like how to cook a meal and would find myself lost in places I was familiar with.
“I kept asking the same questions, struggling to pay for shopping. I also became angry about things I never would have been angry about before – it was upsetting for my family.”
Debbie described the turning point which led to her diagnosis.
She said: “One morning, I was in work and a colleague asked me a simple question. I became confused in the classroom and left.
“I was found by another colleague, walking about in the corridor, not knowing where I was or recognising who my colleague was.
“Steve was called, who immediately took me to the GP.
“I was referred as an urgent case to the memory clinic.
“I received a series of memory tests and scans.
“Sadly, on my consultant’s advice, I had to retire from work. After 22 years doing a job that I loved, this was so difficult for me.”
She described how at first, she found her diagnosis frustrating. She struggled to come to terms with her new life and found it difficult to accept help.
She said: “It was really frustrating because I had always been really confident and independent, but I became to feel like I was really silly, seeing people’s reactions to me.
“I didn’t want anyone to know about the dementia. I was embarrassed about losing my independence and I was determined to do the things I struggled with.”
However, with the support of her dementia support worker, Lorraine Davies, and GP, Debbie gradually came to understand and accept her dementia.
“I had never heard of this happening to anyone my age before,” Debbie said. “But with their help, I began to think differently about it. It became more about adapting my life and understanding that it is different now.”
Debbie, has recently moved into a smaller house to make her life more manageable and her family have made living adaptations.
“I have this diagnosis but I am really lucky,” she said. “I have got a massive support network – my husband, my three children, my sister and my best friends who are like family to me. My confidence would have been so low without them, but some people with hidden illnesses don’t have that.”
Though Debbie has a positive outlook, there are aspects of her life before dementia that she misses.
“I’ve always loved shopping and buying clothes, but I’m more reluctant to do that now. One day I went shopping with my sister and we went to try on some clothes.
“When I came out of the changing room, I didn’t have my trousers on and I hadn’t realised – I was devastated.
“It really knocked my confidence thinking how had I gone from being this really together person to this.”
What really motivated Debbie to start opening up about her dementia was fighting the stigma she and many others experience in her position.
She said: “When I’ve told people that I have dementia, they have often thought it was a joke and have laughed.
“In a supermarket queue, I’ve been asked why it’s taking me so long to decide how many bags I need. A cashier once said, ‘If it takes you this long to decide how many bags you need, then God help you!’
“It’s not their fault – I didn’t know about it myself. I don’t feel angry with people not knowing.”
What Debbie wants is for people to educate themselves on hidden disabilities and to realise that stopping, listening and helping someone like her can make the world of difference to their quality of life.
Chris Roberts is 58 and from
Rhuddlan.
He was diagnosed with young onset dementia in 2012 at the age of 51 and he is now an ambassador at the Alzheimer’s Society.
He is self-employed with a property rental business, which his wife, Jayne, now manages. Together, they have five children.
“At first, nobody really noticed my symptoms, but I did,” he said.
“I did maintenance on our properties and began to notice that I could no longer pack my tool bag properly – I would have to make repeat journeys because I’d forgotten things,” said Chris. “I thought it was just me turning 50, that it was a phase and that it would pass.”
However, it wasn’t long before others started noticing differences.
Jayne said: “I noticed he was taking different routes to places. I would ask him why, but couldn’t fault his logic. He became badtempered and we also noticed he had started to repeat himself a lot.
“There were a lot of symptoms that now, with retrospect, we can see were part of his dementia.”
Chris has emphysema, so for a while they put his symptoms and confusion down to lack of oxygen
getting to his brain – with Chris being 50 years old, dementia was not something they considered.
After about 18 months of these symptoms, they realised dementia could be a real possibility when Chris’ GP dismissed his symptoms being down to emphysema, and gave him a mental function test.
“I had lots of tests, and it took 13 months to actually get a diagnosis, in which time, my dementia progressed.
“I was diagnosed with vascular dementia first and Alzheimer’s five months later. What I have is called mixed dementia.”
In many ways, Chris said he found the diagnosis to be a relief – that he could now put a name and a cause to his symptoms and “wasn’t going mad.”
But the couple said they found it difficult because some healthcare professionals struggled to speak to them about it with ease. They believe this is because of upsetting connotations associated with a terminal diagnosis.
Since his diagnosis, though, Chris said amazing dementia support has developed across Wales.
One piece of Welsh legislation that has been invaluable to Chris and Jayne’s quality of life is the Social Services and Wellbeing (Wales) Act 2014.
It aims to make care and support personal to the needs of the individual seeking it, as well as allowing them to choose how they do this.
“In our case, it wasn’t suitable to put Chris into care or get a personal assistant. If Chris was away at a care home we would both find it isolating,” said Jayne. “Instead, the act helped us to get a motorhome. When we are sat at home together, we are both affected by dementia.
“When we are removed from that, it is positive. It has one room, making it easier for Chris and it means we can get out.”
The couple also use their motor home to travel around to raise awareness about dementia and dementia support, to try to improve quality of life for others. Not only did this have a positive impact on others, it helped Chris too.
“I wanted to do something to help others because I was struggling and felt useless,” he said.
“Then I discovered the Dementia Friends information sessions by the Alzheimer’s Society, which are groups held to help educate people.
“From that, people asked us to go and talk about dementia publicly and we have been invited to speak all over the world.
“When I think about it, I am half the person I used to be, but what I have is the best life that we can manage for this situation and we are very, very fortunate that we can do this.”
In 2016, Ailsa Morton’s sister, Sara, from Cardiff, was diagnosed with young-onset dementia at 51.
“At first, Sara was diagnosed with atypical depression,” said Ailsa, 49.
“She had symptoms of dementia, but we didn’t realise it was that at the time. Now with what we know, we can see it much more clearly.”
“For example, Sara would follow us around and I noticed she would drive in the wrong gear.
“She started struggling to choose something if we went out for a meal and got into financial difficulty, despite previously being an accountant and always good with money.”
Ailsa described how her sister’s diagnosis at such a young age had a considerable impact on the family.
“When she was first diagnosed, it was horrific. She is my older sister – she was the person I had always gone to and looked up to.
“We were in complete shock, she was 51 years of age and I was never aware of the condition at all, but in the last three years, I have found out an awful lot about it.”
Sara initially received care at a mental health unit at Llandough Hospital in Cardiff, before being moved to a dementia ward – though this did not specialise in young onset dementia.
She then received specialist care at St Barruc’s ward at Barry Hospital for around two years.
“The staff there were all incredible with Sara,” said Ailsa. “The patients there have challenging needs – they’re often in fight or flight and it can’t be easy. But they all had so much patience and expertise.”
As her illness progressed, Sara became more vulnerable and moved into a care home.
According to Ailsa the care is very good, but, again, it does not specialise in young onset dementia.
Despite the amazing service they provided for Sara, Ailsa said she had concerns over the sheer lack of specialist facilities for people with young onset dementia.
She described it as being “really difficult” seeing her sister being cared for with the elderly.
Sara now has very limited speech, though she still sees glimmers of her former self shining through.
“I just hold her and walk with her when I see her. You get to a stage where you accept it, but seeing them deteriorate is hard.
“The fact that Sara was so distressed – and often still is – shows that it is incredibly hard for her.
“Seeing her so desperately sad and unlike herself meant that she must have found it like some sort of madness – we really do have no idea.”