Dementia is a word thrown about for everything from memory loss to being stuck for words. Helen O’Callaghan looks behind the diagnosis
More people in Ireland are living with dementia than would fit in the Aviva Stadium. One in two Irish people know or have known someone with dementia – yet only one in four of us feel we have good understanding of what dementia is and what it isn’t.
This big gap in public knowledge means we don’t know the point at which normal age-related memory loss becomes severe enough to be deemed dementia. We don’t know the risk factors for the disease – and we don’t know whether or how we can protect ourselves against it.
Professor Brian Lawlor, director of the Memory Clinic at St James’s Hospital and professor of Old Age Psychiatry at Trinity College, is chair of the HSE-led Dementia: Understand Together campaign. He says there are many myths about dementia.
False: Increased age is the biggest risk factor for dementia – but it’s not a normal part of ageing. In fact, nine out of 10 older people (over 65) don’t develop dementia – many mature into their 80s and 90s without much memory decline.
Lawlor says it’s a common misconception that everybody gets senile and demented with age.
“As people slow down physically, their mental processing speed gets slower too. But if you’re given enough time to retrieve the information, you’re generally as accurate as a younger person.”
In fact, he says, ‘crystallised intelligence’ – accumulated knowledge and wisdom – generally become greater as you age and you tend to react less negatively to circumstances than a younger person.
False: Dementia doesn’t discriminate – one in 10 people diagnosed are aged under 65. “The youngest I’ve seen was in their late 30s,” says Lawlor.
Most people with early/younger onset dementia are in their 40s or 50s. They may have a family history of dementia and they’re most usually affected by Alzheimer’s disease (impacting on memory/language/way-finding areas of the brain) or by fronto-temporal dementia – this can affect language function, behaviour and personality.
“A person could become more withdrawn or disinhibited,” explains Lawlor.
False: There’s no cure, but if you can find out the cause of the dementia, you may be able to target it with a particular treatment.
“This could stabilise the trajectory of the illness for a period of time,” says Lawlor.
“If due to blood vessel damage, for example, you can ensure high blood pressure, high cholesterol and blood sugars are controlled.”
A diagnosis also means an opportunity to plan. “You can plan ahead – such as assigning an enduring power of attorney. You can look at safety issues around driving. It doesn’t necessarily mean the person can’t drive, but whether they’re safe to drive should be kept under review.”
False: One person with dementia said: ‘There are still things I can do, like walking, smiling, crying, laughing, speaking my way. I am here and I hear you speak. I have not yet gone.’
Just because someone with dementia might have difficulty communicating doesn’t mean they can’t understand what’s going on.
No matter what stage their dementia, even if they have trouble understanding, it’s important to communicate directly, rather than ignoring them and dealing only with their carer/family member.
Very often a person with dementia can understand much more than they can express.
According to the Understand Together initiative, showing understanding and empathy can help bring dementia out of the shadows.
“Just a small thing – asking how someone is doing, taking a few minutes to chat, calling by for a cuppa or giving someone the time to collect their thoughts can make a big difference and can help combat the stigma and isolation people sometimes experience.”
False: Increasingly, evidence suggests leading a healthy, active lifestyle may help maintain brain health.
“We know that lifestyle factors are involved,” says Lawlor.
He recommends exercising often, not smoking, eating healthily, reducing alcohol intake and controlling high blood pressure and high cholesterol, as well as dealing with diabetes, depression and social isolation.
“If you address these factors in mid-life, you may be able to reduce likelihood of getting dementia.”
It’s also vital to keep the brain active – keep socially engaged, meet people, challenge yourself with a mind game/puzzle, learn a new skill or find and use a talent you didn’t know you had.
False: Dementia’s an umbrella term to describe a set of symptoms that occur when brain cells stop working properly.
There are at least 400 different types – the most common is Alzheimer’s disease.
This often develops slowly, over several years – early signs usually include difficulty in forming new memories for recent events.
People may also have difficulty coming up with the right words, figuring out problems, making decisions, judging distance and finding their way to familiar places.
Other types of dementia affect people differently. For example, Lewy body disease can affect movement.
False: In early stages, dementia can be confused with age-related forgetfulness, which we can all experience – it’s not unusual to forget names or where you’ve put your keys.
With dementia, however, memory loss is more significant than occasionally forgetting things and it tends to gradually worsen.
“It starts interfering with day-to-day functioning – people forget to pay bills, they miss appointments, they have difficulty cooking, their sense of direction is failing so they’re losing their way and taking wrong turns, they have difficulty negotiating an airport. These higher-order functions can be affected early on,” says Lawlor.
In later dementia stages, they may have difficulty dressing, bathing, walking or recognising family and friends.
Other dementia facts are quite sobering – it affects 55,000 people in Ireland right now and by 2036 this number is expected to more than double. Two-thirds of people living with dementia in Ireland are women.
“Women are affected more because they live longer. And also – though we don’t understand why – they seem to be at more risk of developing it,” says Lawlor.
At times, people are very frightened and don’t want to come forward for consultation.
“They can be very distressed. They don’t understand what’s going on. They think it might be depression or stress. But often, making the diagnosis can help – it gives clarity about what’s going on.”
*The Dementia: Understand Together initiative aims to raise awareness, provide information and highlight the importance of public support around dementia issues. It is led by the HSE working with the Alzheimer Society of Ireland and Genio.
For more information, visit www.understandtogether.ie or Freefone 1800 341 341.
© Irish Examiner Ltd. All rights reserved