1 in 5 people with dementia in NI battle symptoms for over 2 years before getting a diagnosis
New Alzheimer’s Society research revealed at launch of Dementia Action Week 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 22% in Northern Ireland 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 41% in Northern Ireland waited between one and two years.
One of the main reasons for delay, according to 29% of respondents in Northern Ireland and compared with 42% across the UK, was that they assumed the symptoms were just part of getting old1, 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.
Bernadine McCrory, Northern Ireland Country Director of Alzheimer’s Society 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 more than a quarter (27%) of those who were diagnosed after two years only sought a diagnosis because they had reached a crisis point 1 – with two-thirds struggling to look after themselves (64%)1, half finding it too difficult to cope (51%)1, and a third having an accident (33%)1 before they sought help.
There are 900,000 people living with dementia in the UK, including 22,000 in Northern Ireland.
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.
Sally Halliday is a retired nurse from Strathearn just outside Belfast. Her husband Jack passed away from dementia in December 2018.
The first sign that something had changed was that Jack, who had been a drummer for many years, lost the ability to keep up with the rhythm of music.
He was also fluent in German and decided to take a A-level German night class.
“He came home one night with a raging headache and he’d lost all his ability with German- he couldn’t read it, he couldn’t understand it and he couldn’t speak it,” Sally explained.
He eventually went to the doctors, but getting a diagnosis was a long and difficult road.
“He was diagnosed two years after he had his first test,” said Sally.
“He was given all sorts of scans but no one said the word dementia until two years in.”
Sally says having an early diagnoses could have determined what type of dementia Jack had and therefore what treatments would have suited him.
“There are so many types of dementia that need to be addressed in different ways but in the advanced and final stages the care becomes more uniform.
“With Jack he deteriorated so quickly at the end but his mind was still sharp.
“He had a general diagnosis of dementia and this meant that some folk wrongly assumed that he didn’t have a say in his care.
“Dementia affects everyone differently and in a perfect world treatment should to be tailored to each individual.
“Also, an earlier diagnosis perhaps could have meant that we could have started on medication sooner, enquired about ongoing clinical trials, stopped skirting around what we worried about but wouldn’t voice, by the time I had acknowledged the facts it was too late to discuss them with Jack.
“An earlier diagnosis would have meant we could get help, advice and hope.”
After his diagnosis Jack and Sally were determined that he could still live a full and happy life and the couple enjoyed frequent holidays.
However, when the couple were in Madeira in 2018 Jack took a fit and had to be admitted to a coronary care ward. He later had a pacemaker fitted in Belfast.
After that the couple stayed closer to home but still enjoyed day trips and picnics.
Over the course of a weekend in July 2018 Jack suffered a series of falls and he was admitted to hospital in the early hours of the morning.
“In the space of 24 hours he had gone from walking about to being bed ridden so it was a big shock.”
He spent the next six weeks in hospital and was discharged with a full care package at the end of August 2018.
“His GP and healthcare team were just fantastic and we had two carers who came in four times a day plus two that came in at 1.30am and I was very grateful for that because without it I couldn’t have kept him at home.
“It was really difficult when Jack was in hospital because he was frightened all the time being out of his own surroundings but if he had been in hospital during the pandemic I wouldn’t even have been able to see him, so I’m grateful for that.”
Sally and her son John ensured that he was never on his own, with John sleeping on a settee behind the bed at night to keep him safe. Jack passed away at home in December 2018.
Since her husband’s death Sally has become an Alzheimer Society volunteer and helped out at the Belfast Glow walk in March.
“Dementia is something I’m becoming more and more aware of. I have a friend that is living with it at the moment.
“I suppose it’s because people are living longer. I feel it’s such a big problem that we really need to step up to the mark and do something about it.”
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 our Dementia Support Service on 028 90 66 41 00. 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.