Seán McCague and dementia: he would say ‘the computer’s not working as well as it used to’

In retirement, former GAA president Seán McCague loved to sit on a chair put out for him at the pitch side of his local Scotstown club in Co Monaghan, and comment on the play: “Fantastic kickout”, “wasted ball” and “where’s Beggan going?”, as club and county goalkeeper Rory Beggan made a characteristic foray up field.

But when discussing the football game on the way home, his family could tell he had no memory of what he had just watched.

That was the ephemeral nature of daily life after “mixed dementia” – a combination of vascular dementia and Alzheimer’s – took hold. He lived with it for more than 10 years, before his death, at age 77, in November 2022.

During much of that time, his being out and about at the club, or with friends in the village pub where he was born and that still bears the family name, was vitally important. Not just for him, but also for his wife, Bernie, who was caring for him at home but knew the community was looking out for him too.

Don’t hide dementia, that doesn’t help, is the heartfelt message of the couple’s five daughters, who are featuring in a campaign, Dementia: Understand Together, to be launched by the GAA and the HSE on July 9th. They want to raise more awareness about the realities of this chronic neurological condition and how communities can respond.

Seán was well-loved in Scotstown and the wider county, even before his election to lead the GAA from 2000 to 2003. He had been principal of St Mary’s primary schoolteacherin Monaghan town and had managed the county’s senior football team to three Ulster titles between 1979 and 1988, as well as to their first (and to date only) National League Division One title in 1985.

His five daughters are talking to The Irish Times about their father on what, coincidentally, would have been not only his 81st birthday but also their parents’ 58th wedding anniversary. They remember a man, renowned for his leadership qualities, as a loving, good-humoured and wise father. Contrary to what people might have presumed, he never pressurised his daughters over school work, even though he was a teacher.

However, acorns don’t fall far from the tree, and all five women now work in public service jobs – the three oldest are primary schoolteachers/principals, the fourth is a Garda inspector and the youngest is a radiographer. Four of them, Paula McGonnell (57), Nuala Smyth (55), Martha MacCinna (52) and Emma Flanagan (46), still live in Co Monaghan, two in Scotstown, while the other sister, Freda McCague (48), lives just across the county border, in Louth.

Nuala says people often think the person with dementia doesn’t realise they have it. “But in the early stages, when you’re given the diagnosis, you do know you have it. He did know that, and it did impact him emotionally. But he was very cute at covering up.”

The onset of dementia, which is an umbrella term for a range of progressive neurological symptoms, is typically slow. In hindsight, the first signs of out-of-character behaviour were reported by Bernie after the couple had taken a cruise about a year after his early retirement from teaching in 2004. She noticed he seemed “a wee bit nervous”, and he was never an anxious person, says Nuala.

“She was trying to shop in Spain and he was following her around and she said, ‘That’s not like him’.”

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He and extended family members liked to tell yarns for entertainment. “We found that he was telling the one and he’d tell it again then,” says. “He didn’t realise that he had told it before. That was one of the early indicators.”

Emma says: “We could tell that there were changes in his memory. We were probing it for quite a while with various avenues through the health system before we got a diagnosis.”

He was in his late 60s when the formal diagnosis was made.

Consultant neurologist Dr Sean O’Dowd, who is clinical lead for HSE national dementia services, always reminds a patient as they leave a clinic or hospital with a new diagnosis that they are the same person as when they came in.

“It’s just that they have this information now about another layer of their life. This is a chronic disease and, like a lot of chronic diseases, we may not have a cure for it. It may impact things and slowly will progress.”

But he encourages them to remain physically, cognitively and socially active and to continue to participate, particularly in things they enjoy. It is important, he says, that they try to avoid the natural reaction to withdraw because of self-doubt, self-criticism or stigma.

“It’s important for families to hear that too,” he says. “In our lifetime, one in two of us will know or care for somebody who’s affected by dementia. So, it touches everybody nearly.”

He believes this island-wide campaign among GAA grassroots will help “to destigmatise and make this something that people can talk about and not feel that it’s something they need to hide”.

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There are about 64,000 people in Ireland living with dementia and for two-thirds of those it is Alzheimer disease. (The most common types among the other third include Lewy body disease, front-temporal dementia and vascular dementia.) These numbers are expected to rise to 150,000 by 2045 as the population ages; currently about 11,000 new cases are diagnosed each year.

In the absence of a register, these are “guesstimates” based on data in other comparable countries. However, O’Dowd expects an Irish dementia registry, which has been funded in the past 12 months, to be “a real game changer” within the next five to 10 years.

It will mean “we can actually get a meaningful grasp on how many people are affected by the syndrome. Then that will inform how services are planned and obviously it will also inform research and clinical trials.”

Clinical assessment is the cornerstone of dementia diagnosis. A history of symptoms observed by the individual and people who live with them is taken initially, but the diagnostic tests that follow are evolving rapidly.

“The quality of brain scans and how much information they add has come a long way,” he says. MRI (magnetic resonance imaging) is nearly always used now, which is very sensitive compared with a Cat scan.

Tests for biomarkers, the two proteins amyloid and tau, which build up in an unhealthy brain, can be conducted specifically for Alzheimer’s. This is done through lumbar puncture fluid samples but ways of testing blood for these proteins have been developed.

“Blood-based biomarkers are certainly on the cusp of entering clinical practice,” says O’Dowd, who works at Tallaght University Hospital in Dublin. “From a validation and research perspective, we know that they’re safe and reliable. They won’t entirely replace the other approaches, but they’ll certainly make the process a lot smoother, I think, and more patient friendly.”

Both medical and social support are essential after a diagnosis. The latter demands a broader, societal response, he suggests.

“Social isolation is of and by itself a risk factor. But also, once people have been diagnosed with dementia, we know that social connectedness does meaningfully impact on their experience and quality of life. There’s this complex but sort of intuitive interplay between things like social connectedness, mood, physical health, and you’re trying to optimise all of those things.”

Yet stigma around the condition, says GAA community and health manager Colin Regan, “still means that too many people, out of the fear of saying something wrong or doing something wrong, take a step back” – at a time when those with the diagnosis and their carers most need them to step in.

GAA involvement in the HSE’s Understand Together (understandtogether.ie) campaign was Regan’s idea. He is on a 12-month sabbatical, working on the Atlantic Fellows programme at the Global Brain Health Institute. The institute is a collaboration between Trinity College Dublin and the University of California in San Francisco to protect the world’s ageing populations from threats to brain health, with a focus on dementia.

Regan brought new knowledge from the fellowship to the campaign, designed to increase awareness among the 1,616 GAA clubs about the vital role they can play if one of their members, or their wider community members, receives a diagnosis of dementia – “to reassure them around what stepping in means, in the context of a sports club,” he says.

It means largely doing exactly what they have always done: treating those people as valued club members and ensuring they still have opportunities to contribute.

“And, as those opportunities might narrow a little as the condition develops, to make accommodations, to ensure that they have the opportunity to be a vital part of that club for as long as they possibly can.”

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At the All-Ireland senior football semi-final in Croke Park on Sunday, an awareness video featuring Scotstown will be played multiple times on the stadium’s big screens and a giant banner will be unfurled before the match between Kerry and Dublin. Highlighting the importance of reminiscence therapy, those attending will also be able to relive iconic moments from their team’s past through legendary commentaries of the late Mícheál Ó Muircheartaigh at The Replay on the Cusack Stand concourse.

When Seán McCague first received his diagnosis, he pulled back from going to matches and elsewhere for about six months, his daughters remember. But after having time to process the news, “he was a bit more open to going places and meeting people again,” says Nuala. His language and interpersonal skills lasted well into the later stages of his illness, when his memory was letting him down.

“When he did start to go back out, he was always keen to say that his memory wasn’t as good as it had been,” says Martha.

“He would maybe throw in a line ‘oh sure, I’m doting’,” says Freda.

Or, Emma chips in: “The computer’s not working as well as it used to.”

Her sisters all laugh in instant recognition.

“He had ways of adapting and using his intelligence to get him out of difficulty,” says Paula, recalling how he would artfully get Bernie to fill in gaps without letting on that he did not know, for example, who was arriving at the house. Within a couple of years of his diagnosis, they noticed how it became increasingly difficult for him to follow conversations involving more than two or three people.

“We found that conversations had to be kept at a slow pace, with only one person speaking at a time – which can be difficult in a large family,” jokes Emma.

The Covid pandemic, with the first lockdown from March 2020, was a very hard time for their parents and upsetting for the sisters. Their mother, who was not well herself, had to cope with their father’s care on her own. All they, and the 12 grandchildren, could do was go up to the house and wave through the window.

“He’d say, because he didn’t understand, ‘Come on in. Would you ever come on in?’,” says Nuala, tearful at the memory. “And we’d say ‚‘We just can’t come in today’. And then two minutes later, he’d say, ‘Come on in. What are you doing out there?’”

It was a dreadful time, agrees Emma, who, because she works in a hospital, had to completely distance herself from them. “I couldn’t even do the shopping.”

“That was my job,” says Martha, who rues how all their going in and out of the house, which was so important and gave their mother a break, had to stop. Then, on September 1st, 2020, Bernie was diagnosed with ovarian cancer. Their father had to go into residential care in St Mary’s Hospital, Castleblayney, initially for respite, while their mother started chemotherapy.

“I think we all grieved him so much then because we couldn’t get in to see him and he was gone from the house,” says Martha. “I think we all knew he was never going to come back to the home in Scotstown. I know I did most of my grieving for Dad at that stage.” The staff of St Mary’s were “amazing”, she adds, and he was “unbelievably happy and well looked after there”.

Despite the sadness of the situation, the family still had plenty of laughs with him. Nuala would tell him stories about people he knew years ago, pretending she had just bumped into them in the village.

“I knew not to ask him questions, just to tell him things.” He also loved to hear stories about children in the school where she is principal. “That sense of fun was always there.”

The sisters want any family dealing with a new diagnosis to know that does not mean “life falls apart straight away. It is very gradual. There are laughs along the way as well as sad moments.”

They also appreciate their parents’ positive attitude to life, which was evident at the time of his diagnosis, and then hers. The couple stressed how lucky they were to have had a long, happy marriage and five healthy children. Bernie was to die 16 months after her husband, in March 2024.

Martha recalls them saying, “We’re not going to start complaining ... Everybody gets something”.

Daddy’s big joke, she adds, was “nobody’s getting out of here alive”.

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