"These are the cards we have been dealt, let’s work with it" - a Leeds widow pushing for changes to treatment of early onset dementia
Every three minutes someone is diagnosed with dementia in the UK.
That stark fact comes as more and more people are being diagnosed - and in less than 20 years there will be 1.6m people living with the silent killer of a disease in the UK.
However, the process to get that diagnosis is prolonged and painful and leaves relatives watching their loved ones deteriorate before their eyes.
Eugene Harris was 68 when he died in August last year but his battle had started several years before he had even retired. He was diagnosed in 2016 - but even then it took 18 months of tests and brain scans to discover he had the condition.
Now his widow is campaigning for more awareness of early onset dementia, is involved with the training of GPs to spot the signs and working with the Young Dementia Hub in Leeds where the ultimate goal is to have a dedicated respite centre for patients and their families.
It is not the retirement that Diana Smith-Harris, 61, envisaged but as Eugene’s condition deteriorated she left her job in health and social care and dedicated her time to making the most of the time the devoted couple, of Oakwood, had left together.
And after his death, she is still pushing for change to help other people and families who will face this cruel illness in the future.
There are around 8,000 people in Leeds living with dementia and of that figure, five per cent or 300 to 400 people have early onset dementia and they can be as young as 48 years-old.
It can get mis-diagnosed and be mistaken for work stress among other things and there is still no definite known reason why and who gets it.
Research is still on-going, which Mrs Smith-Harris is keen to campaign on - as well as the process of diagnosis.
It took 18 months for Eugene to get an official diagnosis but his wife says really, she already knew.
“He had taken himself to the doctor to say ‘something is not right, I can’t remember things’. He was an upholsterer and was forgetting whose furniture he was making, what colours they wanted, mixing them up and not remembering the customer.
“Luckily our GP specialised in dementia and got the ball rolling for tests. It took 18 months but when they told us, I knew by then because he was forgetting more and starting to deteriorate.”
Tests have to be repeated at certain time intervals and Mrs Smith-Harris was initially concerned that, as Eugene was originally from Saint Kitts, it was an unfair test because he wouldn’t have been aware of some of the traditional English questions.
However, she says the diagnosis was a relief and she threw herself, and Eugene, into all the groups, sessions and help that was available in Leeds for dementia sufferers and their families.
She said: “Anything that was going I was there, we went all over the place.”
One place that was, and still is a lifeline, is the Young Dementia Hub and it was there that the couple met other people with dementia and participated in activities such as music, therapy and cooking.
Away from his day job, Eugene was a classically trained pianist and could translate an Ed Sheeran song onto the steel pans he used to play at the West Indian Carnival.
The couple had met when Diana went to sing in his band when the original member had gone on holiday. And, regardless of how bad Eugene’s dementia got - he never forgot the music.
“He could play anything. He was really fun and loved to play out and loved music. He would work all week and at the weekend we would do gigs, weddings and parties. Whatever happened, the music was always there, you could play a tune and he would recognise the music.”
In addition, cookery sessions at the hub have led to the launch of a cook book inspired by the recipes families make there.
“Eating Well with Dementia” offers nutritional and practical advice approved by a registered dietician, alongside the recipes that range from Caribbean inspired banana cake, a traditional lemon sponge to classics and finger foods.
Mrs Smith Harris is now working with universities and GPs to help them identify what early signs they should be looking for in patients and back at the hub, they are working towards improving the respite facilities in Leeds.
There is no dedicated place for people with early onset dementia other than care homes where residents are much older and have other complex care needs. The ultimate goal, she says, would be for the authorities to build a dedicated respite centre or to create one within a current care home.
Although it has been a year since Eugene died, his wife takes positivity from being able to raise awareness of early onset dementia and hopefully help other sufferers and their families in the future.
She said: “It is the journey of life. The dementia journey and what that throws up - I don’t think ‘why us?’ These are the cards we have been dealt, let’s work with it.
“Unfortunately Eugene is not here, but you know what, every day I am living - he is still living. We are sharing information about him and our life and that is positive, he would support that.
“It is nice that we are able to still talk about him and move the cause forward, it is something we need to keep doing and pushing along.”
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