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Over one in four people with dementia in the North West battle symptoms for over TWO YEARS before getting a diagnosis

John Owens
John Owens

New Alzheimer’s Society research launching Dementia Action Week (16-22 May) reveals confusing symptoms with old age is one of the main reasons for delay

A new Alzheimer’s Society survey of more than 1,000 people with diagnosed dementia, carers and people without a diagnosis, found 27% in the North West lived with the condition for more than two years after first noticing their symptoms, before getting a diagnosis.

The figures, released today to mark the start of Dementia Action Week (16-22 May), also showed a further 35% in the area waited between one and two years.

One of the main reasons for delay, according to 48% of respondents in the North West and compared with 42% nationally, was that they assumed the symptoms were just part of getting old, leading to a delay in accessing treatment, care and support.

In a bid to tackle the problem, Alzheimer’s Society has today launched a new campaign – ‘It’s not called getting old, it’s called getting ill’ – to encourage people worried about their own or their loved ones’ memory to seek support in getting a diagnosis.

The charity has worked closely with leading clinicians to make the diagnosis process easier, developing a new ‘symptoms checklist’, available on their new online hub, highlighting changes that might be due to dementia.

In an emotional film released on Monday 16 May, the charity shows how the symptoms of dementia, such as asking the same question repeatedly, can easily be dismissed as a sign of old age.

Amanda Boult, Dementia Connect Local Services Manager for Lancashire and Cumbria said: “Asking the same question over and over again is not called getting old, it’s called getting ill. If you’re worried for yourself or someone you love, take the first step this Dementia Action Week – come to Alzheimer’s Society for support.

“The stark findings of our survey released today show just how dangerous it can be to battle dementia symptoms alone and put off getting help.

“Yes, getting a diagnosis can be daunting, but it is worth it. More than nine in 10 people with dementia told us they benefited from getting a diagnosis – it gave them crucial access to treatment, care and support, and precious time to plan for the future.

“With the pandemic causing diagnosis rates to plunge, it’s more important than ever to seek help. You don’t have to face dementia alone, we’re here to support everyone affected.”

Alzheimer’s Society’s survey also revealed over a third (32%) of those who were diagnosed after two years only sought a diagnosis because they had reached a crisis point with over three quarters struggling to look after themselves (80%), nearly half finding it too difficult to cope (40%), and having an accident (40%) before they sought help.

There are 900,000 people living with dementia in the UK, including 17,000 in Lancashire.

More than 200,000 people will develop dementia this year, the equivalent of one person every three minutes. But with diagnosis rates at a five-year low, tens of thousands of people are now living with undiagnosed dementia without access to the vital care and support that a diagnosis can bring.

John Owens, 64, is from Chorley near Preston and was diagnosed with Dementia in December.

He has been married to his wife Julie for just over 40 years and they have a daughter and four grandchildren.

For many years John was Head of Finance at a large commercial business and more recently worked part time at Preston Crown Court before his retirement.

John had been experiencing tiredness and forgetfulness for ‘quite some time’ which he attributed to stress but when he struggled to remember his wife’s name he decided to go to his GP and ask for help.

His GP carried out some tests at the start of last year and referred him to a Memory Clinic, which led to nine months of further testing.

“I had all sorts of tests. Some were ok but I found some very debilitating. It’s very in your face when they do the assessments that there’s something wrong.

“I was already aware there was a problem, but maybe not fully aware of the extent of it.”

Last September John and his wife had an appointment with a consultant who said he was confident John had dementia and he is currently undergoing further tests to find out what type.

His life has completely changed since he received his diagnosis.

“It was heartbreaking. I was such an independent person and I was always juggling my life and work. I used to be Head of Finance for a company with an annual turnover of £100m and now I can’t take myself to the doctor if I have an appointment.

“Not being able to drive is horrendous. I have to rely on other people.

“I always thought of myself as the head of the family, but that’s not the case now and that’s hard.

“I love running and I’ve done marathons in London and one up in Scotland but now I have to stay close to home. I’ll still do a 4km or 5km run but I’ll just do a loop around the village where we live so I don’t get lost.

“I can’t take my grandchildren out on my own, as I’d never forgive myself if something happened.”

Despite how difficult things have been John says it was right decision to seek a diagnosis.

“I’m glad I found out. It’s better to know what the diagnosis is. It is frustrating that I now have to wait to find out what type of dementia I have because I want to finish the picture.

“I’ve been put on medication to slow the progression of the dementia and that makes me feel I’m doing something about it.

“It’s not going to get better, it’s going to get worse. I know that but I can help to manage it.”

John has recently started attending a Dementia Café run by Alzheimer’s Society.

“I didn’t really want to go at first. I suppose in a way I was fighting the dementia diagnosis and I saw going to the café as an acceptance of what was going on. But my wife persuaded me and I’m glad she did.

“The staff were so welcoming and I really enjoyed my second visit. I was able to help out and that was a good feeling.”

John said his friends and family, and in particular his wife Julie, have been a fantastic support to him since his diagnosis.

“She deserves a sainthood for looking after me, we’ve been together a long time and married over 40 years. She’s the light of my life.

“My dementia diagnosis has been really hard for her. It’s had just as much impact on her as it’s had on me but she is always there for me.

“The people who are closest to me and my family have been fantastic.”

Alzheimer’s Society conducted a separate public poll which found a lack of knowledge about dementia symptoms and fear, are also significant barriers to seeking help, with (18%) in the North West admitting they would not recognise the symptoms of dementia, and (20%) in the area saying they would not go to the GP for a diagnosis because they were scared.

Family and friends play a big role in helping people recognise the onset of dementia symptoms, but worryingly, (47%) in the North West confessed they would feel uncomfortable raising concerns with a loved one if they were showing symptoms.

The charity’s most recent research has also revealed that denial played another factor for why people put off seeking a diagnosis for over two years, with nearly a third (29%) saying they were in denial about their symptoms, or they did not want to get a diagnosis.

Dr Jill Rasmussen, the Clinical Representative for Dementia at the Royal College of General Practitioners, said:

“It’s vital for patients, their families and GPs that conversations with the potential for a diagnosis of dementia are timely and effective. The new checklist developed with Alzheimer’s Society is a simple, free tool to help patients and their families clearly communicate their symptoms and concerns during an often time-pressured appointment. This resource could make a real difference in identifying those people who require referral for a more detailed evaluation and diagnosis of their problems. We’re asking anyone who is worried about possible dementia symptoms to use the checklist and share it with their primary care team”.

This Dementia Action Week, Alzheimer’s Society is urging anyone worried about themselves or someone they love to take the first step and contact the charity for support. Support and more information about a diagnosis is just a phone call or a click away. Visit alzheimers.org.uk/memoryloss or call 0333 150 3456. For callers who do not have English as their language of choice, Alzheimer’s Society can arrange a simultaneous language translation service.

Dementia describes a group of symptoms that include problems with memory, thinking or language, and changes in mood, emotions, perception and behaviour. Dementia is caused by diseases of the brain and is not a natural part of ageing.

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