Early on-set Alzheimer's is particularly demanding on patients and carers. Sylvia Thompson reports.
It started with little things, like when Eileen couldn't remember her pin number on her banker's card and then when she went into the bank to retrieve her card after it had been swallowed by the cash machine, she couldn't remember her name.
Then, later that same year, when she was on holidays with her son, she couldn't remember her middle name when asked by immigration officials at a Canadian airport.
Ruth O'Reilly (20) a second year college student and the eldest of three children of Eileen and Kevin O'Reilly speaks matter-of-factly about how in 2001, she, her Dad, her younger sister and brother began to notice things were just a bit off with Eileen who was then working as a fulltime solicitor in the civil service.
"She just wasn't able to keep up with her work so she went to her GP who is also a friend of the family and he picked up very quickly that it was something more than depression so she was sent for tests and in August, 2001, Alzheimer's disease was confirmed," explains Ruth.
"It wasn't a huge shock to me. I was expecting it really because I had spent a lot of time with my mum and had noticed the changes."
Following one year's sick leave, Eileen O'Reilly took voluntary retirement from her job. At 54, Eileen O'Reilly was young to be diagnosed with Alzheimer's disease yet, recent estimates suggest there are over 3,500 people under 60 with early onset dementia in Ireland .
The vast majority of these individuals have Alzheimer's disease. "In the early days, Eileen was aware of having Alzheimer's and that must have been horrendous realisation for her. She was very astute and followed the press details of the drug trials for Alzheimer's disease.
We thought a solution would be found before the illness took hold," says Kevin O'Reilly.
Although the symptoms of the disease are often similar to those diagnosed at a later stage, there are a different set of circumstances.
For instance, those diagnosed at a younger age are usually still at work at the time of diagnosis. They may have young children and heavy financial commitments. They may also be physically fitter and have more challenging behaviour as a result.
Some will also, like Eileen O'Reilly, be more aware of their disease in the early stages.
"The symptoms for early onset Alzheimer's disease are similar but there can be more pronounced language difficulties early on and more difficulty with learned motor movements such as dressing and undressing," says Prof Brian Lawlor, professor of old age psychiatry at St James's Hospital and Trinity College Dublin.
"There can also be more rapid rate of progression of the disease. The care burden is greater because these people are at the peak of their productivity and the impact and distress of a diagnosis of dementia is higher," he adds.
Eileen O'Reilly now spends her days in the family home in South Dublin.
On Mondays, she goes out to lunch with two of her friends and an Alzheimer's Society home help comes to spend time with her on Monday and Wednesday mornings.
She often spends Fridays in an Alzheimer Society daycare centre. Otherwise, she muddles through her days, grasping opportunities to spend time with other family members when they present themselves.
"She doesn't like being on her own and as things progress more and more, she is more and more distressed and agitated although she's still quite easy-going and we have a laugh," says Ruth.
"She's happy to sit in my room when I'm doing my college work. But she gets upset when we leave the house and I've missed quite a bit of college and my Dad has missed some work days. But, it has brought us together as a family.
"We've had to pull together and my dad is great - he encourages us all to get on with our lives. We spend our time juggling schedules. You'd get frustrated and angry with her if you were there all the time."
"My sister and brother are brilliant cooks so they do a lot of the cooking, as does my Dad. It's funny really my mum used to be a really healthy eater and conscious of what she ate now she only wants to eat chocolate and yoghurt.
"I often take her with me to do the food shopping, and, the other day, I found her in another aisle of the supermarket, eating a bar of chocolate. The only thing you can do is laugh. The playfulness is part of how we deal with it."
"Things have got more difficult in the last week or so and she has started to wander away from the house. She wouldn't be able to tell someone her name or where she lived if they found her so we leave her contact details with her. Soon, we won't be able to leave her on her own anymore."
The Alzheimer's Society has been very helpful, but there isn't a respite care facility for younger people with Alzheimer's disease, she points out. Families of those with early onset Alzheimer's disease also find it distressing to leave someone with early onset Alzheimer's disease in the company of elderly people, some of whom are in the advanced stages of the disease.
Anne Mescal, manager of training with the Alzheimer's Society of Ireland, confirms there are problems with lack of services for those diagnosed with early onset Alzheimer's disease and the younger age profile of these patients is the central issue.
"We do our best to strike a balance between not raising hopes of those looking for specific services for younger people with Alzheimer's disease (because we know that many of the services are geared towards older people who may already be attending community-care day centres) and encouraging people to look at what is available in their areas by making contact with public health nurses and other healthcare professionals."
Prof Brian Lawlor adds that there are no dedicated services for those with early onset Alzheimer's disease.
"Although the numbers of those with early onset dementia are not increasing, the population demographic is shifting and the number of people with dementia will double by 2050. Right now, we are not geared for that and there will be a lot of catch up needed in services," he says.
In Britain , advocacy groups have stressed the importance of dedicated services for those with early onset dementia. Meanwhile, Ruth O'Reilly is determined to remain upbeat about her mother's condition.
"I was quite close to my mum and would meet her for lunch when I was at school. When I look at other friends' relationships with their mums now, it's kind of hard to accept.
"We realise that her health will deteriorate but if you thought too much about it, it would be too upsetting. You realise that you can't get too self-absorbed because you have to take someone else into consideration," she adds.