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People don't have to be afraid of dementia – they just need to know the facts

Actor and director Ronan Smith writes about his greatest life challenge to date – the progressive neurodegenerative disease, Alzheimer’s Disease.

Ronan Smith

Ronan Smith was born into a theatrical family, and acted as a child in RTE’s Tolka Row, and in various feature films. He is the son of distinguished Dublin theatre impresario, the late Brendan Smith and his actress wife Beryl Fagan. Having studied law after school, he qualified as a solicitor and then immediately gave into the genes, developing a steady career as an actor and director, before, over the years, turning to management and production.

Among many other projects, he was fortunate to play a significant role in the international touring of Riverdance, and in mounting productions for the West End and Broadway. He continues to work in Dublin’s larger theatres, the Gaiety Theatre and the Olympia Theatre. And now, he faces his greatest life challenge to date, the progressive neurodegenerative disease, Alzheimer’s Disease.

MY FATHER BRENDAN was a significant presence in Dublin’s theatrical scene during my childhood, running the Olympia Theatre, the Brendan Smith Academy of Acting, founding the Dublin Theatre Festival in 1957, and bringing Irish productions of plays by the likes of Sean O’Casey and Brian Friel to London, Paris, New York and even as far afield as Hong Kong. Sadly, this significant career fell into chaos at its end, as he succumbed to Alzeimer’s Disease – a progressive disability that he chose to hide from everyone for as long as he could.

As I worked alongside him in the 1980s, having effectively dropped my own career when I discovered how bad things were, I set about untangling him from his collapsing businesses. I became slowly and painfully familiar with the landscape of this condition. So, when, nearly three decades later in 2014, I began to experience uncharacteristic lapses in my own memory function, I thought I recognised an unwelcome pattern and took medical tests.

The numbers of those with dementia are expected to double in 20 years

I am now one of 48,000 people living with a diagnosis of dementia in this country – 4,000 of whom are under the age of 65. The numbers with dementia are expected to double in 20 years and treble in a generation. Against these troubling figures there is an equally troubling backdrop of prevailing stigma that shrouds the condition in myth and fear, and unnecessarily worsens the burden of carrying it.

I feel very strongly about advocating for a better understanding of Alzheimer’s and the related dementias – the typical image of the older person languishing in the nursing home, sinking into a decline, is very far from the whole picture. There are significant cohorts of people with dementia who are dealing with it, living with it, and for them it is a very minimal and manageable manifestation that does not have to disrupt the substance of their lives.

My own story is still untold, incomplete, and not yet written. I am very aware of what is being done in terms of research, which is advancing rapidly, and I have decided to hope: because hope is a reasonable position. I am working hard to stay fit and healthy and Ialso work hard at staying positive.

This time around I have to fight my own battles, not my father’s. When I talk publicly about my dementia I have this inappropriate feeling that I am ‘coming out’. The fact that many people encountering a sufferer find this condition awkward and embarrassing to deal with isn’t in itself surprising; it is just lack of familiarity.

It’s so important that people don’t feel isolated 

I understand it in human terms but, really, embarrassment isn’t such a terrible thing! It doesn’t really last. I am eager to ask people to please try not to be intimidated or afraid of an embarrassing encounter. Yes, sometimes it may be a little awkward because non-sequiturs can occur, or there are absences of information or whatever it may be, but what is really important is that people living with the condition (and, importantly, too, their carers) aren’t isolated, because that’s an additional demand they really don’t need.

It is important that those living with dementia stay socially engaged. This is why I have signed up to become an advocate for The Alzheimer Society of Ireland’s “Irish Dementia Working Group”and why I have decided to ‘come out’ publicly, appealing to people to be open to engaging withpeople with dementia and their carers – because it can make such difference.

People need to know the facts dementia. It is a progressive, degenerative disorder which is not a natural part of ageing, nor exclusively a condition of older age. There is currently no known cure but, with the correct supports, people with dementia can continue to live well in our communities for a significant period. More employers need to be more informed about the condition; the more they know and understand about dementia the easier it will be for the person with dementia to keep working, as I am.

People don’t have to be afraid of dementia. Don’t forget cancer was experienced as shame in the 70s and 80s. Let’s not repeat the mistake.

How can you help? The Alzheimer Society of Ireland is inviting people to hold an Alzheimer Tea Day party on Thursday, May 7th, to raise funds for services which support people living with dementia. Call 1800 719 820 for an Alzheimer’s Tea Day pack, or see teaday.ie

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Ronan Smith

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