Living with a dad who has dementia: Young woman tells of illness's impact
Grainne McGowan's father developed a rare form of dementia in his early fifties. She tells Jenny Lee what impact her dad's illness has had on him and his family
ALMOST 4,000 people have formally been diagnosed with dementia in Northern Ireland. Although primarily thought of as a condition affecting the elderly, an increasing number of people are developing the life-limiting condition at any earlier age and many children are having to face up to the reality of living with a parent with dementia.
Frontotemporal dementia (FTD) is a relatively rare form of the condition. Thought to account for fewer than one in 20 of all dementia cases, it commonly affects people between the ages of 45 and 64.
The condition has robbed 22-year-old Derry woman Grainne McGowan's family of their caring, fun-loving, and protective father.
Danny McGowan was diagnosed in his mid-fifties with FTD, which is caused by damage to cells in the frontal and temporal lobes of the brain and primarily affects behaviour, personality and speech.
This weekend thoughts will turn to Father’s Day but instead of the usual gardening or fun gifts Grainne used to buy her dad, she will get him something practical – such as shoes that are easier for the staff at his care home to put on him.
Danny, now 61, was only in his early fifties when he started showing symptoms of FTD. He began to struggle with conversation and behaviour, which ultimately led to him stepping away from his accountancy business.
Initially, doctors put the symptoms down to depression but Grainne and her family knew that there was something else going on. Her mother Donna pushed for more tests, which led to Danny being diagnosed with FTD at 56.
While every teenager is embarrassed at times by their parents' behaviour, Grainne admits feeling annoyed by her dad’s early symptoms.
“I was frustrated at him doing stupid things, so the diagnosis came as some relief, to know what it was. But it was really hard. He was so young, and so were we. My younger brother, Pearse is only 16 now, so it’s all he has ever known.”
“We all had to step up and help out and I had to do a lot things with my younger brother that my dad would have done, like taking him to football training,” says Grainne, who has two other siblings, Ciaran (34) and Sarah (32).
Sadly, Danny’s mother was diagnosed with Alzheimer’s at around the same time he was diagnosed with FTD and in 2014 the family were delighted when Danny joined thousands of other people who have been affected by dementia in taking part in the annual memory walk to raise funds for the disease.
Like other types of dementia, FTD tends to develop slowly and get gradually worse over several years. After beginning to take seizures and lose his ability to speak, Danny’s care needs became very extreme. Doctors eventually persuaded Grainne’s mum that he needed to move to a care home.
It’s two years since Danny moved into a care home full-time and Grainne tries to visit her dad a couple of days a week. “At the moment, he has no conversation skill left. You get the odd word out of him, but that’s all," she says.
“I sit with him and watch TV. Sometimes we show him photos but we don’t get as much of a reaction from showing them anymore. But thankfully I’ve never felt he’s not recognised me."
And the hardest part of his illness?
“Just the day-to-day stuff. Dad would have been into gardening and I enjoyed doing that with him and we’ve great memories of holidays every year in Fuengirola on the Costa del Sol.”
Grainne, who is studying biology at Queen’s University Belfast and doesn’t rule out a career in medical research, is passionate about raising awareness of her dad’s condition and helping find a cure.
Last Christmas she raised over £2,000 for Alzheimer’s Research UK by donning different coloured glitter eyebrows over the Christmas season at Metro Bar in Derry where she works part-time. Grainne took on the challenge because there are currently no treatments that can slow or prevent the development of FTD.
“The number of people with it is increasing and it’s affecting younger people and their families. As a young person I find it hard to say the word dementia when people ask you about your parents. You’re continuously having to learn to adapt.”
Dr Laura Phipps of Alzheimer’s Research UK says she is grateful to Grainne for sharing her story about her dad’s experience of dementia and highlights a new resource the charity has developed to help young people to understand more about the illness.
“It is heartbreaking when a loved one is diagnosed with dementia, and can be particularly difficult for young people, who often have no previous direct experience of this condition," Dr Phipps says.
“It is essential that we continue to tell our stories about dementia so that more young people are aware of the condition and the symptoms a loved one might develop. We have also developed a resource, dementiaexplained.org, which helps children and teenagers learn about dementia.
“There are currently no treatments that can slow or prevent the development of dementia. Our mission at Alzheimer’s Research UK is to bring about the first life-changing treatment for dementia by 2025, but we can’t do this without dedicated volunteers and fundraisers.”
:: If you are interested in setting up a fundraising group to help fightback against dementia, you can contact Matt Clarke, Regional Fundraising Officer for Northern Ireland at firstname.lastname@example.org for advice and assistance.