Isolation is never easy. For a person with dementia it’s especially difficult

Siobhan Grant greets me in the lobby of St Joseph's in Shankill, Co Dublin, the largest dementia day care centre in the State, and directs me to the hand sanitiser.

“Would you mind?” she says. “We’ll be doing that a lot today.”

The global coronavirus pandemic is presenting enormous, complex challenges in all settings where people gather. Nowhere are those challenges more visible or acute than in nursing homes. If social isolation is difficult at the best of times, it’s infinitely more difficult in a dementia care setting.

"The threat of coronavirus for the people in our care is huge," says Grant, who is the fundraising manager at St Joseph's, during my visit days before the lockdown. St Joseph's is home to 60 long-term residents, and has two respite beds, and a daycare facility.

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When I visit, a decision has just been taken to suspend all community-based activities, which means that morning’s much-anticipated weekly outing by a nearby Montessori school has been cancelled, along with the dementia choir practice. On Friday access to the building is restricted along with all non-essential contact and community-based activities. No external groups or under-18s can visit. Communal activities have temporarily ceased for residents, who are staying in their own lodges.

Now the issue for staff has moved on to trying to keep life as normal as possible for residents. But “normal” at St Joseph’s may not be exactly what you expect.

Despite how common dementia now is – as the population ages, one in three of us will get it – the condition remains shrouded in fear and anxiety. Unless a family member develops it, many of us will never have been inside a dementia care home. Our image of them is what we have gleaned from news reports and popular culture – in other words, a place that is institutional, even joyless.

St Joseph’s is anything but institutional or joyless. Everywhere, there are reminders of life outside. There’s a cinema complete with popcorn machine; a beauty salon; a bar; sensory rooms and brightly painted courtyards. Every wall and door has photographs and memories of residents’ lives. One has a row of ties and the business card of a man who was the head of HR at a large company before dementia meant he had to retire.

The goal here is to help people live the best quality of life that they can. “People here are not just sitting, waiting to die. We’re not warehousing people,” says Grant.

Helpful and kind

Roy Brown’s wife, Anne O’Loughlin-Brown, has been a resident since October 2018. He spends at least an hour with her every morning. “One thing you need to know is that everybody here is very friendly, and helpful, and kind. Everybody. People who are nursing. People who are helping. People who are cleaning. Everybody,” he says.

Brown has nicknames for all the staff. Grant is Supercharged Siobhan, the reason for which quickly becomes apparent as she brings us on a brisk tour of the six individual lodges, which are a crucial part of the care model at St Joseph’s. “I like coming here. The place is stuffed to the doors with charmers,” Brown says.

Anne is having her lunch in the dining room of Avoca Lodge. It's a warm, welcoming space, with comfortable furniture and personal touches such as paintings and photographs on the walls.

“See this?” Brown asks, pointing to an attractive rustic scene on the wall. “That’s Anne’s.” He bought it just after their first date, 33 years ago, he explains.

She told him she was an artist. “I asked her, are you doing any painting? She said, Oh, I have some paintings in an exhibition opening on Monday. So I went quickly on Monday and bought a painting, and there we are.”

It was love at first sight, he says. “I picked her up in the station. Literally. In Westland Row station. The snow was deep on the ground in January,” he says, with a flourish.

“I’m standing there at the pedestrian crossing, waiting for the lights to change, when a vision of loveliness passes over the pedestrian crossing. I saw her crossing the road. And you won’t believe this, I said to myself, that’s just the kind of lady I’d like to marry.”

He was 50 when they met. He was a late starter, he explains. “The young ones just weren’t interested.”

It was difficult for him to adjust to her dementia. “First of all, her memory was poor, and she went to the memory clinic up in St James’s. She was reasonably okay for a while, but then gradually – very gradually – her memory became worse and worse.”

The most difficult thing for a family member of someone who has dementia, he thinks, “is to keep saying yes. There’s no point contradicting them most of the time. You have to keep saying yes. You have to keep telling porkies eventually.”

When he visits, they usually spend some time looking at old family photographs. “You have your good days, when it’s very easy. You have your medium days, when it’s not so easy. And you have your very bad days,” he says.

“We’re still happy. But obviously I’d prefer she were at home in her ordinary state of mind, but sure there you are.”

Helena Larkin has been working at St Joseph's for 18 years. There have been huge changes in that time as the centre transitioned from being a home for the "frail elderly" to an innovate new model of care for people with dementia, she says. "It's just gone from being a hospital to a home," she says.

“The kettle’s always on. We always have a laugh. It’s homely. It’s not clinical.”

In a room just along the corridor from Avoca Lodge, Larkin has set up a spa for residents. “We’ll come in here and turn off the lights, and put on waterfall music and lavender smells. We’ll have a glass of wine and put a face mask on. The girls are treated as girls here. They’re not treated as old women.”

What does she think is the biggest misconception about people with dementia? “Just that they can’t live any more. They can still be happy. It’s not the case that they’re just ‘gone’, and that’s it. You work with them at the stage they’re at. And at this stage we can still have fun.”

At later stages, she says, “it might be more about sensory experiences”.

Another staff member, senior nurse Aldo De Guzman, has created a full sensory experience for residents in the later stages of dementia. He has repurposed the dining room in one lodge, dimming the lights, setting up a projector displaying woodland scenes, placing stuffed animals around the room, and burning aromatherapy oils, as he gives everyone a hand massage.

It’s like theatre dressing, Grant explains later. “You’re creating a scene.”

Marian and Michael Caulfield are here today to visit Marian's mother, Lena Daniel. Michael was volunteering here, driving specially designed rickshaw bikes for the residents, before Lena came to live here just over a year ago. Lena is in a jokey mood today, alternating between laughing and playfully scolding the photographer.

Having Lena here “has been an absolute lifesaver”, Marian says.

Before her diagnosis, Lena had been engaging in obsessive behaviour. “She’d go shopping, and she’d buy lots of stupid things. Or she’d put things away in silly places. You never knew what you were going to find in the fridge. You’d find clothes in the kitchen press, and the dishes in the clothes drawers. Once you acknowledge it, it becomes real. And once it becomes real . . .” her voice trails off. “My mum was more like my friend.”

Marian is very worried about what will happen during the more intensive coronavirus restrictions. “Helena said she’d set up FaceTime, so we’ll still be able to stay in touch,” she says.

Long-time residents Mary Mernagh and Joan Hechler arrive into the sittingroom. Mernagh and Hechler are best friends. As I watch them sit together on the couch, where they chat about their love of swimming in the sea, it occurs to me how difficult it will be to impose "social distancing" in a home like this.

What’s it like living here, I ask them. “Anything but exciting,” says Mernagh acerbically, and both women howl with laughter.

Lauri Dolan's wife of 60 years, retired opera singer Patricia, who performed at the Gaiety and on RTÉ many times during her career, avails of day care services at St Joseph's three times a week.

He first noticed something was not quite right with Patricia on a trip to Russia a few years ago. They always enjoyed travelling, but she didn't seem to really be engaged with it.

“You’ve told me on that trip that there would be outings, and she would take the opportunity to go back with one of the other guests to her room, rather than go with you,” his daughter, Aisling, reminds him.

Aisling noticed a few subtle signs as long as 15 years ago. "Every handbag she had, she had 'Husband: Lauri Dolan, Address, Contact Number' on the inside. She used to go to the doctor by herself." Later the family found out she was having herself tested for dementia.

“She would always say the worst thing that could happen to me would be that I would get Alzheimer’s,” Aisling says.

They had a conversation about it recently, Lauri says. “I said to her, You know you’ve got dementia. And she said, Oh yes, I know. So I said, how do you feel about it? And she said to me, how do you feel about it?”

He replied carefully that he felt it was a pity. “And I asked her again, how you feel about it? She said, well it doesn’t bother me. And I told her, I envy you. And I do.”

She is very happy, they both agree. “She’s an extrovert. She really is. She’s the life and soul of the party here. She comes in and sees it as her job to wake them up.” He mimics her breaking into the chorus of Summertime.

“She rises to the performance every time,” Aisling says.

“She’s always telling me how much she loves me, and that she has had a wonderful life with me and the children, she has a wonderful life with me. I say, you make it sound like I’m going to die every time you say that,” Lauri laughs.

At 87, and not in the best of health himself, he is her main carer. He has had to learn to manage the household, and do the “cooking and the shopping and the clearing up. I never did all that. I’m a very good cook now.”

He feels the ageing process has accelerated dramatically in the last two years, “with the extra work and the stress and the responsibility”.

Aisling agrees. “Because Mum is so happy, the person we, as a family, worry about most is Dad. And St Joseph’s is a huge reason why mum is so happy. She lives for the days that she is here.” They have an additional 10 home-help hours, but feel they could do with more to ease the stress on Lauri.

Coronavirus may be the most immediate and urgent threat looming over the staff and residents of St Joseph’s, but it is not the only one.

Late last year, the centre stopped accepting new admissions amid a funding crisis. The crisis made national news in December. The issue, Grant explains, is that resourcing of nursing homes does not match the cost of delivering specialised care, dementia care in particular.

She breaks down the figures. “The cost of care here is €1,790 per week per person. But the Fair Deal scheme only allocates us funding of €1,325 per week per person.”

That's why, says Sheehan, "we are in deficit to the tune of €1.2 million. For the last eight years, we have been roughly a million in deficit." So far, that deficit has been made up by the St John of God organisation, which runs the centre, but it has said it can no longer continue to do so.

Now St Joseph’s has five empty beds it hasn’t been able to fill, despite the fact that there are 369 people on the waiting list for a place. “If the number of people with dementia is set to triple over the next 20 years, not all of those people can live at home,” says Grant. “As of now, there’s no funding mechanism, policy or strategy of government anywhere to fund long-term dementia care properly.”

St Joseph's is still in negotiations with the National Treatment Purchase Fund. If those negotiations don't reach a workable conclusion, the options, says Sheehan, are "the HSE takes it over; it goes fully private; another funding mechanism is arrived it, or closure". It's that stark.

A diagnosis of dementia is devastating enough for those family members, says Grant, and they often feel forgotten about. When I ask family members what would help, the answer that comes up again and again is “more advice”.

It’s a slow, often silent grief, Grant says. “You’re losing that family member, as they were. Our job here is to help them through that, by trying to connect with the person underneath the dementia. We’re looking after the person with dementia. But we’re looking after their family too.”