One in four people with dementia battle with symptoms for more than two years before they are diagnosed, new research finds.
Signs of the condition – a syndrome associated with an ongoing decline of brain functioning, of which there are many different causes, and many different types – are too often dismissed as just old age, an Alzheimer’s Society study brings to light.
But the condition is not a natural part of ageing, and can affect memory, thinking or language, and changes in mood, emotions, perception and behaviour.
As part of its 'It's not called getting old, it's called getting ill' campaign launched this Dementia Action Week, the charity has produced a new checklist in collaboration with leading clinicians, including the Royal College of General Practitioners (RCGP) to help people identify its possible symptoms and get diagnosed.
The sheet – which can be printed and taken to the doctor to help both patients and clinicians have an easier diagnosis experience – includes a range of tick-box questions, with options for 'tick if affected by', 'tick if impacting daily life' and 'how long it's been happening'.
The first section, 'Memory and mental ability problems', includes the options 'struggling to find the right word', 'difficulty judging distances or mistaking reflections or patterns for other objects', 'struggling to make decisions, or making careless or risky decisions', 'losing track of time and dates', 'asking the same question over again, or repeating phrases' and 'putting objects in unusual places'.
The next, 'Problems with daily living activities', lists 'struggling with tasks like paying bills, planning ahead, shopping', 'difficulty getting enough sleep' and 'getting lost in familiar places' as possible answers.
While the last, 'Mood and behaviour problems' includes 'becoming easily upset, irritable, or aggressive', 'symptoms of depression, like feeling sad or hopeless', 'symptoms of anxiety, like feeling very worried or uneasy', 'withdrawal or losing interest in things I previously enjoyed', 'acting inappropriately or out of character' and 'feeling restless and walking about'.
There is also space for notes on other symptoms or concerns, hearing problems and sight problems.
Alzheimer’s Society's survey of more than 1,000 people with diagnosed dementia, carers, and people without a diagnosis found that confusing dementia symptoms with getting old (42%) was the number one reason it took people so long to get a diagnosis.
A quarter of people (26%) with dementia in the UK lives with the condition for more than two years after first noticing their symptoms before getting a diagnosis, with only a quarter of these seeking one, or receiving one, because they had reached a crisis point, the figures show.
This includes two thirds struggling to look after themselves (64%), half finding it too difficult to cope (51%), and a third having an accident (33%) before they sought help.
"Asking the same question over and over again is not called getting old, it's called getting ill," says Kate Lee, CEO of Alzheimer’s Society.
"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.
Lee acknowledges getting a diagnosis can be daunting. "I know I was terrified when my mum got diagnosed. But it is worth it – over 9 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," she says.
“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.”
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, the charity warns, tens of thousands of people are now living with undiagnosed dementia without access to the vital care and support a diagnosis can bring.
“It’s vital for patients, their families and GPs that conversations with the potential for a diagnosis of dementia are timely and effective," adds Dr Jill Rasmussen, the Clinical Representative for Dementia at the RCGP.
"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”.
While it can be normal for memory to be affected by stress, tiredness, certain illnesses and medicines, if you're becoming increasingly forgetful (particularly if you're over the age of 65) it's a good idea to talk to a GP about the early signs of dementia, the NHS advises.
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.
See the checklist for possible dementia symptoms in full.
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