Caring for the ailing mind
Signs of dementia can be seen as early as our 30s, writes Áilín Quinlan
YOU'RE in your thirties and the last thing on your mind is Alzheimer's disease – but in fact, you may already be experiencing the brain changes which will result in the condition just 15 years down the road.
New research has revealed that changes in the protein of brain cells which lead to Alzheimer's disease start much earlier than scientist realised – in some cases the deterioration can begin in people as young as 30.
Explains Marc Wortmann, Executive Director of Alzheimer's Disease International: "The changes mean that affected brain cells cease to function effectively and some begin to deteriorate or atrophy.
"It's a very slow process which might not have an effect for many years.
"We know about this because of improved imaging with MRI and PET scans and we can see the changes occurring in the brain," says Wortmann who explains that until recently it was believed such deterioration happened later in life and progressed faster.
"Now it's felt that it could be starting 15 or 20 years before any symptoms show up – and in some cases the deterioration could start when a person is in their 30s."
So a person who displays symptoms of the disease in their seventies could have begun experiencing changes as far back as their mid-fifties, explains Wortmann, who was in Dublin recently for the recent EU Summit on Active and Healthy Ageing.
He wants to see society become both more dementia-aware and more dementia-friendly, pointing to research showing that family carers who are well-educated in the disease find coping with an Alzheimer's patient less stressful.
"Education seems to be very important for the carer because they will care better for the patient and won't get frustrated by things like the loss of short-term memory or a patient who wanders off or who becomes aggressive or apathetic," he explains.
Modern carers should be aware that listening to music, discussing a film, reading a newspaper or playing Sudoku are excellent ways to stimulate the brain, he says.
"Research has shown that people with dementia feel better and can respond well to such stimulus," he says, adding that light physical activity, such as walking is also very beneficial.
The Government has a role to play here also, believes Billy O'Connor, professor of physiology at the Graduate Entry Medical School University of Limerick.
O'Connor, who writes a popular blog on the issue – www.insidethebrain.com – believes that because mental stimulation is so important, the Government should provide free broadband access to pensioners.
"For a person living alone, it would allow them to engage online. This could be a good stimulation," he said, adding that feelings of isolation and depression can help to pre-dispose a person to Alzheimer's disease.
However, in the beginning at least, a diagnosis of dementia can be a shock to family members – when former nurse Olive Houston learned her widowed mother Alice was diagnosed with Alzheimer's disease in January 2009, she failed to take the advice she'd been giving to other people for years.
Along with her sister Ann, who lived with her mother, Olive (38), a mother of two from Dundalk, helped care for Alice who started to show classic symptoms such as short-term memory loss in 2007.
When her mother was diagnosed in 2009, Olive initially failed to practise what she had always preached to others.
"As a nurse I'd always advised people to tap into the services and supply networks as soon as they received a diagnosis. I didn't take my own advice.
"We stuck our heads in the sand for about six months," she recalls, adding that she was "paralysed by fear of the future."
"You are literally grieving the loss of someone who's still with you.
"It's called an 'ambiguous grief' because the person is still alive but you're speaking of them in the past tense."
For Olive and Ann – who became members of Ireland's 187,000-strong group of family carers – their mother's condition meant instant role reversal.
"We became responsible for mammy as opposed to her being the mother. We knew we were facing a long road where we would be making the decisions rather than mum."
And yet despite the figures – around 4,000 cases of dementia are identified in Ireland each year, there are currently more than 41,700 people living with dementia in Ireland and the number is expected to rise to 147,000 by 2041 – it's often still a taboo subject.
"There's a stigma around it," says Olive, whose mother moved into long-term care about 18 months ago after what Olive describes as "at least one mild stroke".
Until then her sister Ann continued to live with, and care for, Alice, with Olive's support, whilst holding down a full-time job.
"We divided the care between us, although my sister was the primary carer," says Olive.
Although her mother was quite independent in the early stages, she could be forgetful.
Support came in the form of a HSE care-worker and home support from the Alzheimer Society of Ireland.
"As time went on my mother became physically more dependent and needed help with mobility and general day-to-day activities like dressing and washing," she recalls.
This is a major issue for a lot of families, she says, and carers often feel embarrassed about asking for help. But, says Olive, a newly-launched website on the disease and how to cope with it will be a huge help to carers.
Olive was a member of the Project Advisory Board behind the new online tool for carers, the Discover4carers.eu website which provides information, advice and carer training opportunities.
She says the big challenges for family carers include dealing with the initial diagnosis, planning for the future and coming to terms with the implications for your life.
"People don't like to admit they feel resentful. They find it hard to ask for help but it's important to realise that many other carers are in the same boat as you.
"They don't choose this – they may have had other plans for the future and it can be a difficult transition," she warns.
On top of that there are the physical challenges – exhaustion as a result of broken nights, lack of energy from using up your reserves to look after someone else.
"Many carers also feel isolated because it becomes so difficult to go out that they tend to stay at home.
Which of course, is where the idea of dementia-friendly societies and cities, comes in, according to Marc Wortmann.
"It's a way of thinking and in some cities like Bruges it's a project," he says, adding that the authorities have launched special education programmes for shop keepers, policemen and firemen – people who may meet people with dementia in their day to day work.
It's about promoting a better understanding of dementia and how it affects people and their families – the city of Bruges organises public lectures and makes information available through public campaigns and a special website on the issue.
Japan is another society which promotes education on dementia – its programme has been adapted to England, while the World Health Organisation has developed a similar 'age-friendly' programme.
"I'd like to see people diagnosed early and see them receiving support at home.
"Education of the family care giver is useful," he says adding that carers should understand the importance of providing mental stimulation.
Respite care in the form of day centres should be available and there should be some form of financial compensation for carers a who give up their job to look after a family member, he believes.
It's now time to put the appropriate supports and resources in place, warns O'Connor:
"Alzheimer's disease is an emerging illness," he says, adding that the incidence of the disease is predicted to quadruple by 2040.
"We're on the cusp of a major explosion in the incidence of AD because we're all living to an older age – now is the time to put policies in place," he says.