Every morning, Siobhán Baron begins her day by confirming that her husband Wayne, aged 58, is still amongst the living. Her recurring fear is whether he’ll even wake up. Six years ago, when Wayne was 52, he was diagnosed with early-onset dementia. According to Siobhán, due to the unpredictable nature of the disease, they’re forced to live from day to day, uncertain when the day will arrive that Wayne wouldn’t recognise her. That is an inevitable reality, she notes, not a figment of her imagination.
While sitting in a Dublin hotel, Wayne refers to this as their “ultimate reality.” The couple insists their intention isn’t to evoke sympathy, but to highlight that almost one-tenth of all dementia diagnoses in Ireland happen in individuals below 65 years of age. They also criticise the acute deficiency of relevant services and support.
At their current age, most of their contemporaries are likely involved in caring for parents suffering from dementia in their old age. But, Siobhán (53) believes that people fail to comprehend how their situation as a couple in their 50s, grappling with dementia, is distinctly different.
The financial impact of the diagnosis has been substantial for the Barons. At diagnosis, their youngest two children were attending a school with fees, and there was still a mortgage on their home in Lucan, Co Dublin. Within a year, Wayne had to stop working as the head chef at Bijou Bistro in Rathgar, due to his declining health. Siobhán, who had previously been a stay-at-home mum, had to start a part-time job to supplement their income and continue taking care of her husband.
Wayne suffers from Lewy body dementia, the third most prevalent type of dementia, following Alzheimer’s and vascular dementia. This type often presents with Parkinson’s, which is currently his most significant challenge. His diminishing mobility, manual dexterity, and concentration made it impossible to continue his work in a bustling restaurant kitchen, resulting in constant dropping of objects. Wayne states that letting go of his work was more devastating for him than his actual diagnosis, at least until he came to terms with it.
Siobhán reminisces, with a hint of humour, that Wayne was often described as “somewhat of a grizzly character”. To an outsider, their playful banter during a chat over coffee would hardly hint at Wayne’s battle with dementia. His walking stick is the only visible sign of his health concerns.
Siobhán explains how Wayne adeptly manages conversations about mundane topics such as the weather or current affairs, despite occasionally forgetting who he’s talking to. Their friends have noticed the cognitive shift, but the understanding ones don’t treat him any differently. She laments the misconception some, including health workers, have regarding dementia which leads them to wrongly conclude, in a slow and exaggerated manner, that dementia has impaired his hearing as well.
Wayne quips about owning a T-shirt that clarifies, ‘I’m not hard of hearing, I have dementia’, although his wife prohibits him from wearing it.
The first inkling Wayne had that something was not right was when he began hearing voices. He was used to constant chatter at his workplace and initially thought his colleagues were talking to him.
Yet, Siobhán points out that Wayne kept this to himself for several months, which raised her suspicions — given their household rule of no secrets, no lies. She even ventured the possibility of him having an affair; a notion they both find amusing now.
Upon his GP’s recommendation, Wayne was sent to Ballyfermot mental health clinic under the suspicion that his auditory hallucinations could indicate schizophrenia. Despite medication, the voices persisted, Wayne recalls.
Having navigated the healthcare system previously due to their children’s ailments – epilepsy and juvenile arthritis, Siobhán was familiar with its nuances. After an electroencephalograph (EEG) was recommended for her husband, Wayne, who was advised it most likely wouldn’t reveal anything significant, Siobhán received a letter indicating a neurologist’s referral. Acknowledging they lived a mere 10 minutes away, she contacted the consultant’s secretary offering to take any last-minute cancellations if required.
The secretary initially warned of a two-year waiting list, yet offered to take Wayne’s details. Astonishingly, Wayne got an appointment scheduled for the following week. Siobhán, anticipating it to be concerning news, had already done her homework based on his symptoms, and had suspected epilepsy since it was an ailment in the family.
The couple was emotionally unprepared when the revelation of early-onset dementia came from Wayne’s medical consultant, Dr Seán O’Dowd, at Tallaght University Hospital. Dr O’Dowd, an expert in neurodegenerative diseases who had spent time at the Newcastle Lewy Body Dementias clinic in the UK, quickly identified Wayne’s symptoms. Both Wayne and Siobhán were overwhelmingly appreciative of his approach.
Siobhán appreciated their doctor’s understanding of their coping mechanism – humour. While Wayne valued his straightforwardness. Hailing from Lancashire in northwest England, Wayne met Siobhán, a native of Co Kildare, in 1993. They were working at the ex-Hibernian United Services Club on St Stephen’s Green.
Today, the pair are embracing life after over 30 blissful years and four children. Initially taken aback by the five to eight-year prognosis for Wayne’s dementia, they’ve learnt to accept the unpredictability of the disease. Wayne’s illness has its ups and downs but they realise that life’s fragility can affect anyone, anytime.
He states that it feels as though his thoughts are slipping away, leading to an emptiness in his mind. He admits, with a surprising self-awareness, that he often repeats himself in conversation, often just minutes after he’s heard something similar. However, he likens his off days to the hamster in his mind’s wheel falling asleep.
The house had already been adapted with a downstairs bedroom, initially for the sake of accommodating Wayne’s possibly relocating parents. Further modifications are currently under works.
His wife Siobhán, who works part-time at The King’s Hospital, says that she doesn’t worry about Wayne being alone at home given their long-term residence there. She mentions their friendly neighbours and the fact that Wayne doesn’t tend to wander off. Wayne no longer ventures out alone, adding to his isolation.
However, Wayne himself isn’t perturbed by solitude. Spending most of his time on the ground floor, he finds company in his lively Springer Spaniel, Lottie. He enjoys playing music and spending time in the garden, where a shelter has been built for him by friends. Carrying on the family presence in the house are their two youngest children, Carla (22) and Cal (21). Their oldest daughter, Jenny (28), lives in staff accommodation at The King’s Hospital, where she is employed, while Shauna (26) is currently residing in Australia.
The entire family is gearing up to participate in the Alzheimer Society of Ireland’s Memory Walk on Sunday, September 22nd, with Shauna joining from Australia. This annual event, sponsored by Payzone and organised for the fifth time, offers those struck by dementia and their allies a chance to both create new memories and honour those who have passed away.
Siobhán often finds solace in a monthly support group organised by the ASI for caretakers of young onset dementia patients. Here, they can openly discuss the often stigmatised topic of dementia–referred to as the ‘Big D’–with people who can truly empathise.
Wayne, who has young onset dementia, finds local day care services inapt, highlighting an age gap and lack of shared interests. In Bessboro, Co Cork, the ASI launched the innovative Activity Lodge earlier this year, amplifying the support for those diagnosed at a younger age with dementia. Regardless, individuals in Ireland with young onset dementia currently number around 4,500.
Dr Seán Kennelly, a geriatric and stroke medicine consultant at Tallaght University Hospital, points out that symptoms recognition is often slow. It is frequently the expectation, even within the medical community, that dementia is primarily an affliction of the elderly – this misperception frequently hinders swift diagnosis.
Research indicates an approximately four year delay between initial symptoms and definitive diagnosis of young onset dementia. Further complicating the scenario, its initial signs are frequently mistaken for depression or stress. For women, it can at times be attributed mistakenly to menopausal symptoms. Nevertheless, Dr Kennelly is hopeful that due to less stigma surrounding mental health issues, advancements in diagnostic techniques, and increased funding for the National Dementia Service, individuals might seek help earlier and receive a prompt and correct diagnosis.
Of the approximately 63,000 dementia patients in Ireland, one could question the benefit of receiving an early diagnosis when there’s no known cure. However, Dr Kennelly, director of the hospital’s Institute for Memory and Cognition, argues that acknowledging the disease helps manage the inevitable anxiety and enables strategic planning to live with dementia as comfortably as possible. Further to this, he states, individuals usually wish to understand their ailment, irrespective of curability, and while no cure exists, managing the symptoms is still possible. An accurate diagnosis can tremendously change how an individual manages their stress and how they continue to navigate life, which aligns with the intent of their service.
The disparities between early onset and late onset dementia hold significant differences. In early onset dementia, there is a heightened likelihood of developing an unusual form of the condition, often frontotemporal dementia that influences behaviour and social activities in the initial stages. Additionally, the possibilities of manifesting a genetic form of the condition are greater. Despite only 2-3 per cent of dementia cases being gene-related, early onset dementia presents a higher probability.
Moreover, it is suggested that there is a stronger societal stigma associated with early onset dementia. As Siobhán testifies, there is often a contraction in social networks as changes related to dementia can cause discomfort amongst friends. Invitations and visits start to decrease.
According to Kennelly, while personal memories are important to everyone, those suffering from dementia often face difficulty past the present moment. Their brains have to work harder in order to grasp ongoing conversations or tasks. As the condition progresses, the individual’s awareness of their memory loss often diminishes.
It often seems that symptoms progress at a faster rate in early onset dementia, due to the age of the individual. However, the degradation rate is likely the same as in older onset. The severity and type of symptoms can vary greatly depending on the individual and where protein buildup in the brain occurs.
Indeed, “events”, such as a fall, heart attack, or the primary caregiver falling ill, often has a greater impact on the prognosis than the dementia itself.
Now, the Baron family tries to create new memories together as they share laughter – but Siobhán speaks of a future where Wayne will no longer understand the circumstances. “They say”, she adds, “with dementia, you say goodbye twice.”