‘He is my dad, but he’s not the Dad we knew’

It is a misperception that dementia and Alzheimer’s disease are conditions of older age. While they are more common in people over 65, the truth is that these cruel, debilitating conditions also rob young minds.

It is estimated that about 3,500 people in Ireland between the ages of 30 and 64 suffer with “young” or “early onset” Alzheimer’s disease or dementia.

Brian Lawlor, a consultant in old-age psychiatry at St James’s Hospital and professor of old-age psychiatry at Trinity College Dublin, says younger people with dementia in Ireland often “fall between two stools” as the specialists who normally deal with these conditions look after people over 65, and there is no dedicated specialist service for younger patients.

“It isn’t very clear what the care pathway is, and a lot of the services that were set up for people with dementia are generally catering for people over the age of 65. In our system it is unclear who really should be taking care of them,” he says.

Coupled with having to come to terms with a devastating diagnosis of dementia, people under 65 also have a number of complex issues unique to their age group.

They are physically fitter, and because some forms of dementia can be associated with challenging physical behaviours, this can be more difficult to manage.

Research has shown that younger people with moderate to severe dementia have more behavioural and psychological symptoms and a low rate of service contact, because they are primarily being looked after by family members. Carer stress is also higher among those caring for people with young-onset dementia.

Still working

Those who are diagnosed in their 40s or 50s are generally still working and may have young children. Their spouse or partner may have to give up work to care for them, or struggle to hold down a job and look after a young family, on top of caring for their loved one with dementia.

Lawlor says there is a real need for specialist-led, flexible, age-appropriate, dedicated services for people with young onset dementia and Alzheimer’s disease in Ireland.

Those who need respite or long-term care tend to end up in facilities that cater for much older people which can be difficult for the patient and their family members.

“They are being poorly served and have been poorly served and I think something needs to be done, but it hasn’t happened,” he said.

“People are aware of Alzheimer’s disease, they are very fearful of developing Alzheimer’s disease but [with] older people there is a kind of a level of understanding and awareness that this could happen. But you don’t expect it to happen under 65, so there is a huge shock and a disbelief that it could,” says Lawlor.

Shock of diagnosis

When Noel O’Reilly from Tallaght in Dublin was diagnosed with young-onset dementia at the age of 62 it was just that, a huge shock, for him and his wife, Peggy.

In hindsight, Peggy said she believed Noel had been suffering for a number of years before he was finally diagnosed. “He would be gone out the back when he should have been going upstairs looking for things, he couldn’t open the hall door and got distracted very quickly . . . It got to the stage where you were afraid of him going out on his own because you didn’t know what it was, or what was happening. But then when I got the diagnosis, it was a shock at the start.

“I was brokenhearted for about two weeks,” Peggy said.

Noel and Peggy’s experience echoes the concerns raised by Prof Lawlor. They were initially referred to Tallaght hospital but were told Noel was too young for the service there.

He was then referred to the memory clinic in St James’s Hospital, where he was diagnosed in December 2012.

Noel is relatively positive about his diagnosis: “So far so good, nothing has happened to me, but [if] it did, I wouldn’t have a clue.”

Both Peggy and Noel agree his personality has changed and this is extremely distressing, particularly for Peggy and the couple’s two adult children. As part of his condition Noel laughs a lot, often at inappropriate times, which Peggy says can be very frustrating.

He also forgets things easily, gets agitated and can no longer work out how to use his mobile phone or the TV remote, for example.

In the past Noel attended a day centre, which was an important outlet for him and provided some much-needed respite for Peggy. However, he says, because the centre catered for much older people, it just wasn’t for him.

At the moment, Noel retains some independence, but Peggy feels he has deteriorated in the past 12 months. “I would hate him to get to the stage where he can’t remember anybody. That is my worse fear,” she says.

Since his diagnosis 18 months ago, Peggy says no one has contacted them to check on how Noel is getting on or how she, as his main carer, is coping.

Share experiences

Both Peggy and Noel have agreed to share their experiences, as they are keen to raise awareness of dementia in young people and the need for age-appropriate services.

“I think it is the worst sickness, dementia, because at least cancer might be able to be cured. But you don’t lose your mind.

“I think that is the worst thing . . . you get to the stage where you don’t know anybody . . . to me they are in this little bubble . . . and they are happy in that bubble, but you are not happy looking at them,” Peggy says.

Both Noel and Peggy say that when they were faced with a diagnosis of young-onset dementia it was important above all to remain positive.

Peggy pays huge credit to the Alzheimer Society of Ireland (ASI), particularly for the help she receives through the ASI carer support evenings she attends once a month with her daughter.

Peggy admits she already misses her husband. “ He is not the same person . . . the kids say, ‘He is my dad, but he is not the Dad we knew.’ ”