My dementia journey: “I wasn’t recognising things and I was becoming very forgetful”
When Ronan Smith cared for his father who had Alzheimer’s disease, little did he know that he would experience the same disease just a few years later.
There are over 500,000 Irish people whose families have been touched by dementia and 11 people develop the condition every day, on average. Yet there is still a level of fear and stigma surrounding dementia, and people with dementia are amongst the most marginalised and socially excluded in society. This results in unnecessary loneliness and isolation for them and for their families.
Ronan Smith and his father Brendan, both experienced this.
“My father decided to hide his illness from everyone,” says Ronan Smith. “He hid it from his wife and his children until we started to become aware that his work was being affected. At this point he was already in the late stages of the disease.”
Ronan’s father Brendan Smith, the legendary Dublin theatre producer, was dedicated to his work and was determined to keep going, even when it wasn’t possible. Ronan decided to take a step back from his own acting career and became a theatre producer himself to support his father’s company while taking care of him in his home.
But Brendan’s condition became so unmanageable that unfortunately, Ronan and his family had to commit Brendan into care.
“That was really devastating. There was so much stigma around his illness. People would whisper words about him rather than talk about his illness directly and cross the street in order to avoid him and the family. It wasn’t cruelty; it was simply ignorance and discomfort. That is why it’s so important that we remove the stigma around it.”
Ronan recognised he was portraying very similar behaviours to his father in 2009. It was at this stage, at only 56 years of age, that he realised that he had the same disease.
“I wasn’t recognising things and I was becoming very forgetful.”
Ronan has familial Alzheimer’s disease, a rare genetic form of the disease. Only about 1pc of cases worldwide are attributed to genetics and it affects people younger than the more common forms of dementia.
“When I knew I had the illness, I decided to throw my energies into the Alzheimer’s Society of Ireland, which I had been involved in after my father went into care. I am an advisor to its Board of Directors and the Chair of the Irish Dementia Working Group. It was my experience with my father that made me want to change attitudes around the illness.
“I have been very busy as an advocate just trying to improve the general public’s understanding of the condition and how people with dementia can be assisted simply by people knowing what the condition is and how it can affect a person.”
Diagnosing the disease
Because Ronan was familiar with the illness, he recognised signs and symptoms before getting a formal diagnosis. Recent research from the HSE indicates that more than three quarters of people understand that getting diagnosed early is very important, but a quarter of people say that they would delay seeking help if they had concerns.
Professor Brian Lawlor, consultant psychiatrist and Chair of the Dementia: Understand Together Steering Group says that if someone has a memory complaint which is starting to affect their everyday life, they should seek a medical diagnosis.
“The most common symptom is short term memory loss, such as difficulty remembering the recent past and forgetting what you have to do in the near future,” says Professor Lawlor. “But everyone can have an occasional lapse in memory. However, when there is dementia, there is progressive memory loss which affects every day functioning, and in these circumstances, it is important to speak to your doctor.
“Your doctor will be able to run through some simple checks and either reassure you that it is not dementia, give you a diagnosis, or refer you to a specialist for further tests. Early diagnosis gives people the best chance to prepare and plan for the future, and to receive treatment.”
Professor Lawlor explains that some people who are developing dementia may not complain of memory problems and may instead find that they are having difficulty with finding their way or with language; for example, having problems expressing themselves and finding the right words. Some find that their personality or mood changes, while others lose interest in getting involved in new things.
Here are some general early signs and symptoms to look out for:
- memory loss, particularly of recent events
- problems with language, or difficulty finding the right word
- changes in mood and behaviour
- becoming confused in familiar surroundings or situations
- difficulty following conversations, TV programmes or reading
- problems managing money and keeping track of monthly bills
- difficulty solving problems or doing puzzles
- loss of interest in hobbies and pastimes
- repeating a question or story several times without realising
“These symptoms vary from person to person, as can the speed of the progression,” explains Professor Lawlor. “People think of the disease as tragic and while it is very tough, with the right supports a person can lead a happy, active life for quite a long time, just like Ronan does.”
Living an active life
One of the biggest reasons why Ronan is still active within the community is that he kept working for as long as he could, with incredible support from his family and colleagues.
“Working in the art sector is easier as it is more flexible. But there are plenty of professions which can allow for people with dementia and can support them in the same role or move them to another role within the organisation if necessary. It was only at the end of 2017 that I voluntarily stepped away from professional work due to stress. But my advocacy work with the Alzheimer’s Society is a major part of my life now as it is a healthy challenge for me.
“I think the real danger for people with dementia and their carers is isolation,” Ronan adds. “Being locked away at home is not good for anyone, so it’s important that people are around not just for practical reasons, but also just to have that level of friendliness and social connection.”
Ronan has seen first-hand the level of support and understanding from friends and the general public and the difference this has made for him and his family. So, has the culture around dementia changed, and does he think it will get better?
“It has improved because when my father got the disease, no one would even use the term Alzheimer’s. But there is still a long road to go to get that general level of support and knowledge. But with so many more people with the disease in working groups around the country, I can see a more understanding future ahead and I’m looking forward to it.”
If you are worried about yourself or someone in your life, it's a good idea to see your GP. You can also freephone 1800 341 341. Phone lines are open Monday to Friday from 10am to 5pm, and on Saturday from 10am to 4pm.
For more information, visit the Dementia: Understand Together website