The first thing Siobhán Baron does every morning is check that her 58-year-old husband Wayne is still alive. “It’s that fear, is he actually going to be awake?”
It is six years since he was diagnosed at the age of 52 with young onset dementia and “because the disease is so warped”, she says, they live day to day. “Nobody can tell us which day Wayne’s going to wake up and not know me. I am not living in a fantasy world, that day will come.”
“That’s the end game,” remarks Wayne, as the couple sit in a Dublin hotel, to share their experiences of a disease that has hit their family several decades earlier than most. But this is no “pity party” they both stress, rather it is about raising awareness that almost one in 10 cases of dementia in Ireland occurs in somebody under the age of 65 and there is a woeful lack of services and supports when it does.
The Barons are at an age when their peers’ exposure to dementia is likely to be caring for parents who have developed it in the twilight of their lives. Siobhán (53) doesn’t think other people can quite grasp how it is a “very different experience” for them as a couple in their 50s.
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There has been a huge financial impact for a start. At the time of diagnosis, the two youngest of their four children were still at The King’s Hospital School – a fee-paying school – and there was a mortgage on their home in Lucan, Co Dublin. Within less than a year, Wayne could no longer do his job as head chef in Bijou Bistro in Rathgar, and Siobhán, who had worked in the home to raise their family, needed to find a part-time paid job to combine with her role as carer to her husband.
Wayne has Lewy body dementia, a lesser known but third most common form of dementia after Alzheimer’s and vascular. It often comes with Parkinson’s, which is what affects him most at the moment. Diminishing mobility, dexterity and concentration soon took its toll in a busy restaurant kitchen. He kept dropping things.
On giving up work, he says, “that’s what destroyed me more than what I have. Until I got my head around it.”
He was “a bit of a bear”, recalls Siobhán wryly as the two of them humorously toss the conversational baton between them. Nobody observing the three of us talking over coffee would suspect Wayne has dementia; only the walking stick signals a health issue.
“Wayne will put on a really good show,” says Siobhán, as he can chat about the weather and the news, even if sometimes he has no clue to whom he is talking. Friends see the cognitive changes, but the best of them don’t treat him any differently. Whereas some people, even among health professionals, have this fixed view of dementia and believe, says Siobhán slowly and loudly, “that… you’re… also… deaf”.
“I’ve got a T-shirt printed, ‘I’m not deaf, I have got dementia’,” chuckles Wayne (although his wife says he is not allowed to wear it).
The first sign for Wayne that something might be amiss was hearing voices. “It was strange because when I worked, the lads were behind me all the time, so I thought they were talking to me. And they’d say, ‘no, no, I didn’t say anything’.
“But he didn’t tell me for at least four or five months, and I was a bit suspicious that there was something going on,” says Siobhán. He seemed withdrawn and one of their household rules had always been “no lies, no secrets”.
“In the end, I thought he was having an affair,” she says, as they both laugh now at the very idea.
“Hardly”, he interjects… but, she continues, “maybe that would have been better”.
The GP referred him to Ballyfermot mental health clinic, on suspicion that the auditory hallucinations could be schizophrenia. “They medicated and that didn’t work, I was still hearing them,” says Wayne.
He was referred for an EEG (an electroencephalogram measures electrical activity in the brain) but told it almost certainly wouldn’t show anything. Having one child with epilepsy and another with juvenile arthritis, Siobhán was experienced in the ways of the health system so when the referral letter for a neurologist arrived afterwards, she rang the consultant’s secretary to say they lived only 10 minutes away and if a last-minute cancellation arose, they would be happy to avail of it.
She had a bit of banter with the secretary who, while warning her the waiting list was up to two years, said she would take Wayne’s name and details anyway. However, the secretary was soon back on the phone – he had an appointment the following Friday. Knowing that was surely not good news, but, having researched his symptoms, Siobhán was thinking epilepsy, as it was in the family, and she felt they could deal with that.
They were totally unprepared to hear Wayne was showing all the signs of young onset dementia. His consultant at Tallaght University Hospital, Dr Seán O’Dowd, a specialist in neurogenerative disorders, had worked in the Newcastle Lewy Body Dementias clinic in the UK and quickly recognised the profile. They both have the highest praise for him.
“He got us. We deal with things through humour,” Siobhán says simply.
“He didn’t pussy foot around, he told you straight. I prefer that,” says Wayne, who still speaks in strong tones of his native Lancashire in northwest England. He and Siobhán, who is from Co Kildare, met “through the swing serving doors” of the former Hibernian United Services Club on St Stephen’s Green in 1993, where they were both working.
More than 30 years and four children later, the couple make the most of life. While there was initial panic at talk at the outset of a five to eight-year timeline, they both know dementia varies widely and, anyway, either of them could be knocked down by the proverbial bus tomorrow.
With Wayne’s form of dementia, there are good and bad days.
On the latter, he says he feels “like the movement has gone… and I’ve got an empty head”. Having a conversation, somebody will say something “and 10 minutes later I will say the same thing”, he explains with a high degree of self-awareness on what is evidently a good day. But on a bad day it’s like the “hamster is asleep” in the wheel of his brain.
They had already built a downstairs bedroom at their home in case the parents of Wayne, who is an only child, might need to move over from the UK. More adaptations are being carried out now.
“I don’t have any fear of Wayne in the house because we’re there so long,” says Siobhán, who works part-time as a matron at The King’s Hospital. “We know our neighbours and he doesn’t wander. Wayne doesn’t go out on his own any more, so that’s also part of the isolation.”
But Wayne says being on his own “doesn’t bother me”. He stays on the ground floor, has his “mad” Springer spaniel called Lottie for company and he loves to play music and sit in the garden, where friends erected a shelter for him to sit under. The two youngest children, Carla (22) and Cal (21), still live at home, while Jenny (28) has accommodation in The King’s Hospital where she works, and Shauna (26) is living in Australia.
The whole family will be taking part in the Alzheimer Society of Ireland’s (ASI’s) Memory Walk on Sunday, September 22nd – even Shauna, who will be doing it Down Under. The Payzone-backed fundraiser, now in its fifth year, is an opportunity for those affected by dementia and their supporters to gather, make memories and also to remember others who have died. (Anybody can register on memorywalk.ie, with events running at 35 locations throughout the country.)
Siobhán attends a monthly support group run by the ASI for carers of those with young onset dementia, who are all familiar with the “Big D” taboo. It is only here that they feel they can speak freely among people who really understand.
For Wayne there are no suitable day care services, although earlier this year the ASI opened the pioneering Activity Lodge in Bessboro, Co Cork to cater for those with young onset dementia. No disrespect to the services that operate locally to him, he stresses, but “they are not my age bracket and we have nothing in common”.
About 4,500 people are living in Ireland with young onset dementia. For some, it may have started as early as in their 30s, but we are very slow to recognise symptoms, says Dr Seán Kennelly, a consultant physician in geriatric and stroke medicine in Tallaght University Hospital. Knowledge, even among healthcare professionals, that dementia is not a condition that just affects older people is “a major barrier to people getting a diagnosis”.
Research shows there’s about a four-year lag from people presenting with symptoms to getting a diagnosis for young onset dementia. First signs are often mistaken for depression or stress, he says, or, in the case of women, they can be believed to be part of the menopause. However, he believes with less stigma now around mental health issues generally and improving diagnostic methods, along with investment in the National Dementia Service, people are beginning to come forward earlier and benefit from a more timely and accurate diagnosis.
Overall, about 63,000 people in Ireland live with dementia. As there is no cure, you might wonder is it beneficial for somebody to know sooner rather than later?
“People want to know what’s wrong with them, whether or not they have a treatment,” says Dr Kennelly, director of the hospital’s Institute for Memory and Cognition. As with many conditions, while there is no cure, there are treatments to manage the symptoms. Most importantly, he says, the feeling that you are losing your cognitive integrity, that you can’t trust what you are thinking or saying, creates huge anxiety.
“Not knowing what might be causing it, makes it significantly worse. I’ve seen first-hand how an accurate diagnosis can be transformative with regards how people manage that stress, how they manage to plan, and how they manage to live as well as possible with dementia, which is ultimately the goal of our service.”
There are a few distinctions between young onset and later onset dementia. Firstly you are more likely to have a rare form of dementia, in particular frontotemporal dementia, which affects behaviour and social function early on. You are also more likely to develop an inherited form. Only about 2-3 per cent of all cases of dementia are related to an inherited gene but in young onset this is more probable.
There is also more stigma, he suggests, than when it occurs later in life. As Siobhán testifies, social circles shrink because the changes make others uncomfortable. Invitations out are less frequent; friends stop calling around.
Memories are deeply personal to all of us, says Kennelly, but for somebody living with dementia often it is “presentism” that is the biggest focus. The brain’s ability to manage something that happened in the past or might happen in the future is toned down.
“Your brain is trying to figure out how it’s managing right now and understanding the conversation or the task it’s doing right now. So, often the person living with dementia as it evolves may become less aware and less caught up with the tragedy of not having those memories.”
Symptoms may appear to progress faster in young onset dementia because they are so at odds with the stage of life, but Kennelly says the trajectory of decline is probably similar as in older cases. However, it will vary for every individual. Not only do different types of proteins accumulate in the brain, but where this is happening also shapes the symptoms.
What’s more, “events”, which could be anything from a fall or a heart attack to the main carer being hit by an illness, often dictate the prognosis far more than the underlying condition, he adds.
The Barons can sit and joke now as a family, intent on making memories, but Siobhán says “it is going to get 10 times worse and we’ll cry then”, when Wayne may be no longer aware of what’s going on. “They say,” she adds, “there are two goodbyes with dementia.”
- For more information on dementia, see alzheimer.ie
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