A sense of occasion still sparks the performer instinct of veteran actor Bryan Murray, despite the unrelenting progression of the dementia he was diagnosed with six years ago.
His impish face lights up in front of cameras as he and his partner Úna Crawford O’Brien, a fellow actor in RTÉ’s Fair City, take centre stage in publicising Alzheimer’s Tea Day, to be held on May 1st. Since bravely going public about his diagnosis three years ago, the couple have promoted openness about a condition around which stigma still lingers.
However, this, their third year as Tea Day ambassadors, is the hardest yet for Crawford O’Brien because Murray (75) has declined sharply in recent months. A year ago he could still do radio interviews; this year she is doing all the talking. Meaningful conversations between the two of them have dried up at home too.
“In honesty, I’ve lost my friend and my companion. All he wants to know is, ‘What are we doing next?’ Or ‘How am I getting home?’ When we’re at home.
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“It’s so sad, because he says this address,” she explains, speaking from their house in Rathgar, Dublin. “But it’s not his ‘home’ and I haven’t been able to locate where his ‘home’ is. Whether it’s his parents’ home, I have no idea. Even though he gives this as the address he wants to go to.”
She cannot envisage them ever going on holidays again because they would only be out of the house and he would want to return. Her partner’s sadness is hard to see.
“Bryan isn’t happy and he used to be such a happy person. I think it’s because he just doesn’t know … about anything really.”
Crawford O’Brien, who had seen her own mother live with dementia, has never been in denial about how the disease would progress for Murray. She also knows there are tens of thousands of families around the country going through similar experiences. It is why she is still glad to put their well-known faces to the fundraising campaign for the Alzheimer Society of Ireland, which provides invaluable support to carers such as her. In tough times, “sometimes friends and family are not the people to phone, it’s the people who are in the know”.
There is no register of dementia cases in Ireland and a figure of 64,000 people living with the condition, which has been quoted for a number of years, probably significantly underestimates the reality, agrees the chief executive of the Alzheimer Society of Ireland, Andy Heffernan. Although awareness is increasing, there is still “this very Irish thing”, he suggests, not to name it. Stigma persists, particularly in rural areas where he sees people regarding the condition as a family matter and not wanting their loved ones going into a centre that says “Alzheimer’s” on it.
That’s why he says to his own staff and friends, the more we talk about it, the less the taboo. “It is what it is.” People can also be very paternalistic after a person’s diagnosis, and want to “wrap up” the individual.
“The first thing I will say to anyone who has a diagnosis is to keep doing what you’re doing,” remarks Heffernan, whose mother had dementia. “In Ireland sometimes we default to the worst outcome and we think of those last weeks and months – there’s a lot of living to be done [before that]. Of course there will be challenges, but we’re here to support that journey.”
Murray and Crawford O’Brien epitomised that advice as they continued in Fair City. Two years ago he also starred in a play that Deirdre Kinahan wrote for him, on the Peacock stage in Dublin’s Abbey Theatre. An Old Song, Half Forgotten was about a veteran actor with Alzheimer’s, who Murray played with the aid of lines relayed through an ear piece. With no short-term memory, he was interpreting material new to him every single night.
Just last month, Crawford O’Brien was glad to see Murray in his element at a Tea Dance in the Round Room of the Mansion House. It was organised by Dublin’s Lord Mayor Emma Blain for a cross-section of the city’s older citizens, some living with dementia, others not.
“It was the best thing I’ve seen him enjoy in a long time,” says Crawford O’Brien. “He got up and danced.”
Blain made promoting awareness about dementia one of her priorities after taking over the mayoral chain last December. She disclosed then how her father, Sydney, has lived with the condition for many years. It is why she was happy to host the recent launch of the 31st Tea Day at the Mansion House.
“I think our family experience has been similar to many others in this,” she says of her father’s diagnosis. “You go along for a few years and you notice the differences and you don’t want to face up to them.
“Then you get the diagnosis – and I think, for me, it was a bit of a relief when we had the diagnosis because it’s like, right, we can take action now, we know where to go. The Alzheimer Society was probably the first place that I went to … and they have been amazing.”
Blain misses the in-depth conversations with her father the most, as dementia slowly unpicks his brain. He is a former principal of the Church of Ireland College of Education, which has since been incorporated into the DCU Institute of Education.
He was always a happy, content, calm individual. So to see him not smiling is probably the hardest part of it
— Emma Blain
“My dad and I used to have conversations about everything, from theology to politics to fashion to everything else, and it’s that kind of connection that’s gone now.” He can still hold a conversation, but the language is becoming more challenging.
“The saddest part to see, as well as the conversation going, is to see my dad not being happy because he is …”, she corrects herself, “he was always a happy, content, calm individual. So to see him not smiling is probably the hardest part of it.”
In talking about her family experience, Blain, one of three sisters, did initially worry about the privacy of her father, and her mother Dorothy who cares for him. But she believes openness is important.
“What we found is that as soon as people know, it’s brilliant; they’re able to adapt and understand. But I’d like to see that happening across the city, in our restaurants, in our service industries and our transport links – all of the places where people need a bit more time.”
A Fine Gael councillor since 2016 and mother of two children, Blain (44) is leading an initiative to set up “dementia cafes” in four of the city’s parks, where people with the condition and their carers can go regularly at a designated time to enjoy the park and its catering outlet.
“There’ll be a special area within the café reserved and everybody will be in the same boat, which is a big deal.” Since raising the idea, she has had many of the city’s museums and galleries saying they would like to be involved too – evidence of the expanding conversation about dementia.
Demands on the Alzheimer Society are only going to multiply as the population ages. Its annual budget is close to €30 million, with 80 per cent from the State and the rest from fundraising and donations. Heffernan admits that coming in as chief executive three years ago, “I would have always asked the question, can you be a good advocacy organisation if you’re also dependent on the State?”
But he does not believe its partnership with the Health Service Executive (HSE) compromises its representative role, which is shaped by two working groups, one of people living with dementia and the other of carers. “Our advocacy is very much informed by them, but also informed by what we see in the services we deliver as well.”
The HSE rightly, he says, funds the bulk of services, but the organisation channels what it raises into supports such as carers’ training, and operating a national helpline six days a week. Its team of dementia advisers has also proved to be very effective and is now up to 35 and growing.
With the recent opening of a centre in Co Leitrim, the society runs at least one day-care service in every county, among a total of nearly 60. A “pivot” during Covid to provide some cognitively stimulating day care at home was validated through research, Heffernan adds, and became an additional service, long after the centres reopened.
It is 11 years since Sylvia Mulhall was diagnosed with dementia. Her family had noticed her repeating herself a lot and items being misplaced at home in Chapelizod, Dublin, where her husband Shay is her primary carer. It was only when he had to go into hospital to have a kidney removed after a cancer diagnosis two years ago that the situation became apparent to a public health nurse.
She suggested the family contact the Alzheimer Society’s local day-care service at Curlew Road in Drimnagh. Sylvia said she would never go to a place like that but, once she was in the door, she loved it, says one of her two daughters, Caitríona Rochford.
Sylvia attends what she calls “school” three days a week. On weekends and other days of the week it is “murder to get her out of bed”, says her daughter, but never on “school” days.
Rochford adds that her mother, who worked in Switzers on Grafton Street (taken over by Brown Thomas in 1990) before she married, was always very sociable and happy-go-lucky. The family are grateful she retains those personality traits, despite the dementia.
Certainly, Sylvia was all smiles sitting on a plush sofa in the drawingroom of the Mansion House at the Tea Day launch with her husband and daughter. But it was a transient pleasure. The next day she had no recollection of the event and denied ever being there.
- The national dementia helpline, 1800 341 341, is open 10am-5pm, Monday to Friday, and 10am-4pm on Saturdays. (Also email helpline@alzheimer.ie) For more information on Tea Day, May 1st, see alzheimer.ie
