Miss Ireland Niamh Kennedy was just five when her father Liam was diagnosed with a form of early on-set Alzheimer’s disease at the age of 42.

“Dad had a really rare condition and about five or six years later his younger brother and sister were diagnosed also. So it is a genetic form of the disease but very rare. Only 1% of the Irish population have it,” the 21-year-old explains.

Liam was sick for 11 years after his diagnosis in 2001 and passed away when Niamh was nearly 16.

“I was right in the midst of my teenage years and it was an extra load for me,” she confides. “I didn’t notice the severity [of dad’s illness] until I was 12/13 and then it hit me like a tonne of bricks.”

A woodwork teacher in St Joseph’s CBS in Nenagh, Liam will always be remembered by his daughter as a gentleman.

“He was a secondary school teacher and went above and beyond for his students. Sometimes I walk down the street and someone will come up and tell me about him and how Dad was their teacher – I always love when people do that. I love hearing those stories about him.”

Growing up on a beef farm in Portroe, Nenagh, Co Tipperary, that just overlooks Lough Derg, Niamh says she has lots of memories that revolve around her dad and the farm.

“He was my best friend and I was so close to him when I was younger. I was always a tomboy and I was out on the farm with him and my brother [Colm] or I was helping them build a tractor,” she says.

The diagnosis

Niamh’s mother, Catherine, was the first to notice something had changed with her husband.

“My mam noticed little things with my dad first and it made her worry a lot. It started with little things, like he forgot his keys or names and the date, but it started to turn into more serious things,” Niamh confides.

“So mam went to the GP, who was amazing all throughout dad’s illness. They [Catherine and Liam] went to see several doctors and had to go to London to Queen’s hospital where he was diagnosed in 2001.

“Mam came home with the diagnosis and no information or direction on what to do next. So she did her own research and the first place she contacted was the Alzheimer’s Society. They had a helpline and shared lots of information and put us in touch with different support groups.”

Talking helps

Though very few have the same condition as her dad, Niamh says that once she began raising awareness of the disease after she won the title of Miss Ireland, people began to get in contact with her who shared similar experiences.

“I have talked to two other families in Ireland that have come to me. It was incredible to talk to people who went through the same thing I did. I always felt like I was on my own but you never are, there is always someone who is going through the same thing as you,” Niamh says.

“I can’t imagine being able to make an impact with raising awareness without being Miss Ireland. I am grateful I have the title and use it in a positive way to help raise discussion about the illness.”

55,000 people in Ireland live with dementia today and the Alzheimer Society of Ireland forecasts that this figure is set to double by 2036.

Dementia is the umbrella term used to describe a range of conditions which cause changes to the brain, Alzheimer’s disease included.

Niamh believes that since her father was diagnosed 17 years ago, people are a lot more aware of the disease.

“I think people are more open to talking about it now. On alzheimers.ie there is an incredible amount of information and they have a helpline too,” she says.

Knowledge Is power

For people who are diagnosed with Alzheimer’s disease, Niamh believes knowledge is power.

“I think it is really important to educate yourself when you receive a diagnosis. People don’t know how to deal sometimes and it can be very difficult but it is good to know more about the disease to help you understand what is happening,” she says.

As an ambassador for Alzheimer’s Tea Day, Niamh also urges as many people to get involved as possible with Tea Day on 4 May.

“I’ve been involved with Tea Days and the Alzheimer Society since I was five, so I am delighted that I will be involved with it on a really big scale, nationally, this year,” Niamh says, as she urges everyone to put the kettle on and join the fundraising campaign.

For more information or to register for your Alzheimer’s Tea Day free fundraising pack, visit www.teaday.ie or call 1800 719 820.