If you thought you might have dementia, would you head straight to your doctor, or would you hold off as long as possible?
If it’s the latter, you’re not alone – a recent survey carried out by the Alzheimer’s Society found that over half of people (56%) admit putting off seeking a dementia diagnosis for a year or more.
Problems with memory are often an early symptom, and half (52%) of the study respondents said if they experienced confusion or difficulty recalling recent events, they’d wait until this had reached a point where it was affecting their work and personal life, before speaking to their doctor about it.
This largely comes down to fear: people are anxious what it would mean if they were found to have dementia.
Almost two-thirds (62%) said they felt a diagnosis would mean their life was over. Additionally, 58% were worried that getting dementia would stop them enjoying things they usually enjoy, 45% think they’d instantly have to stop driving, 22% fear they’d lose their partner or friends, while 49% admitted they’d worry people would think they were ‘mad’.
As the charity notes, the findings highlight there are still a number of myths and possibly inaccurate preconceptions around the condition.
“Too many people are in the dark about dementia – many feel that a dementia diagnosis means someone is immediately incapable of living a normal life, while myths and misunderstanding continue to contribute to the stigma and isolation that many people will feel,” says Jeremy Hughes, Alzheimer’s Society chief executive.
“We know that dementia is the most-feared health condition of our time and there’s no question that it can have a profound and devastating impact on people, their family and friends – but getting a timely diagnosis will enable people with dementia to live as well as possible.
“We want everyone to know that Alzheimer’s Society is here for anyone affected by the condition and there are lots of ways we can help you.”
Around 850,000 people in the UK are currently living with a dementia diagnosis, and experts expect this figure to reach a million by 2025, and two million by 2051. Alzheimer’s is the most common form of dementia, which mostly affects over-65s and slightly more women than men.
There’s currently no cure and Alzheimer’s is progressive, usually starting with mild memory problems which worsen over time, along with increased confusion, disorientation, possible low mood and personality changes, and difficulty with speech, language and carrying out everyday tasks.
The disease can also hugely impact loved ones and close family members, who often become carers.
The nature of symptoms can be deeply distressing and isolating, but there are often many practical, and financial, factors to be considered too. Knowing where to turn for support can be confusing and an extra stress if you’re not sure where to start.
The Alzheimer’s Show, taking place place June 10-11, aims to address this, highlighting the resources available that could make a monumental difference in helping families living with the disease, with over 100 experts and exhibitors flocking to London’s Olympia for the event.
“The Alzheimer’s Show provides a gateway for people affected by the disease,” says co-founder Sara Couchman. “We want visitors to realise they’re not alone, and give them the chance to speak to people who understand what they’re facing, and help them realise that life with Alzheimer’s is manageable once they have established a network of support.”
Billed as a two-day event for family carers, expect an array of exhibitors covering everything from care to latest products (such as technology and aids to help people with dementia in their homes and day-to-day lives) and support services. There’ll also be Q&A sessions and expert speakers, the chance to talk to people with first-hand experience, free clinics with Admiral Nurses from the charity Dementia UK and legal advice from The Law Society, along with practical activity workshops, including singing, seated yoga and art. For visitors attending with a friend or relative with dementia, a calm, professionally supervised Quiet Room, run by SweetTree Home Care Services, will be available as somewhere comfortable for them to stay while carers explore the show.
Re:Cognition Health, who are involved in international clinical trials around new drugs that will hopefully delay the onset and progress of Alzheimer’s symptoms, are attending The Alzheimer’s Show. It’s still early days, but people interested in taking part can find out more about what’s involved and whether they are potentially suitable.
As Dr MacSweeney, Re:Cognition Health’s CEO and medical director, explains, the drugs will work by “either reducing the production of beta-amyloid protein, or increasing clearance of the amyloid protein clumps or plaques that get deposited in the brain”. This potentially marks a key turning point, as current Alzheimer’s treatments can only mask symptoms, rather than addressing the cause, specifically reducing amyloid and tau proteins, which are responsible for the cognitive brain cell damage associated with the disease.
Though it’s still a long way off and uncertain at this stage, MacSweeney says the hope is that one day, we’ll be able to screen people for dementia, and treat them before it progresses – similar to how we are currently able to screen people for conditions like high cholesterol.
“Those found to have high cholesterol are advised to take a statin – to reduce, or keep under control, cholesterol, so as to reduce the risk of developing problems like heart disease, rather than wait until somebody has already developed severe heart disease, when it may be too late,” she explains. “We can take the same approach with high blood sugar, and high blood pressure – screening and then treating early to prevent problems further down the line. Hopefully we will eventually be able to do the same with dementia.”