'Dementia is losing a person very, very slowly' - care home that goes the extra mile
St Joseph’s Shankill — a residential home that has been providing person-centred care to people with dementia for more than seven years — is now under threat due to lack of funding, writes Liadan Hynes
When it first opened in the mid Nineties, Saint Joseph’s Shankill care home was not specifically dedicated to dementia care.
That came almost 10 years later, in 2012, when the centre “morphed” as Siobhan Grant, the facility’s fundraising manager, puts it, from a traditional style open-plan nursing home to six new lodges within the same building. This is when it became an accredited Dementia Care Matters Butterfly Home.
It is now the largest, dementia-specific care home in the country, home to 60 permanent residents, as well as offering respite services and day care places .
Part of the St John of God Hospital group, the centre’s 120 day-care places per week, funded by the HSE, came under threat due to lack of funding earlier this year.
A request for an additional yearly €150,000 to break even on day-care facilities was turned down, and St Joseph’s was forced to inform the HSE that they would no longer be able to continue day care services in 2020. Funding was then made available.
Now though, their residential facilities are under threat.
“We always knew that the residential side of things was going to be more difficult,” Siobhan reflects.
Until now, St John of God Hospital has been covering the annual loss St Joseph’s, a non-profit charity, has been making on the residents’ places; approximately €1m a year.
“We’re saying the State needs to recognised that best practice care for people with dementia needs to be properly funded,” Siobhan explains.
“Currently, there are 11 people a day diagnosed with dementia — those numbers are set to triple by 2040; there is a tsunami of illness coming. People are living longer, and there’s no cure. Dementia is a terminal illness. What makes it any different to cancer?
“Someone who is unlucky enough to get a diagnosis of cancer goes into a system and gets taken along to either a cure or specialised palliative care at the end of life.”
St Joseph’s practises a person-centred model of care which, in the face of a disease, means that while a person is still physically here, mentally they are increasingly eroded over time — each resident is reached for longer than would be the case in less dementia-specific care.
“True person-centeredness is looking at the feeling that things give you,” Siobhan explains of the manner in which the model of care works in the context of dementia. “I mightn’t be able to still drive my rally car around, but the feelings I get from being a motor-car driver are freedom, exhilaration, excitement. Even if I live in a nursing home, I can still have those feelings if I’m allowed and encouraged to experience them.”
The staff at St Joseph’s look at each patient individually; at what might help them to hang on to parts of themselves for as long as possible — an approach which goes towards soothing a person in the face of a terrifying disease.
A resident who was a horserider has been provided with the accessories of her favourite pastime; jodhpurs, a whip, a riding hat. On one occasion, Siobhan brought Shetland ponies to St Joseph’s. For some, it can be as simple as holding the remote control in their hand. A resident, who was formerly head of HR in a big company, has been given a desk with a computer and a nameplate.
“He recently came up to my office when we were having a meeting, and sat down at the table with us, because he is very much at home being at a meeting.”
A local Montessori brings children for playdates. There are two bikes that four people can cycle on for park trips. They are soon to begin a swimming programme. Designer Deborah Veale’s father, Ken Meehan, was an resident of St Joseph’s until he passed away in February of this year.
An architect, the team at St Joseph’s sourced a desk at an antiques shop, put up drawings of some of his most well-known designs, and bought him a briefcase with architect’s drawing equipment.
“I remember Deborah and her mum came in that day, and for them, not only was it person-centred for Ken, but that was Deborah’s dad, her mother’s husband,” Siobhan recalls now.
“I know everybody feels like this about their dad, but my dad really was very precious to us. He was a wonderful human being, very loving, kind, creative,” Deborah herself says.
“Dementia is losing that person very, very slowly, so you hardly see it at the start.”
From the time he was a day-care patient, her father loved St Joseph’s and the staff who looked after him.
“Nobody wants to see anybody leaving the family home,” Deborah reflects. “But we had great solace from the incredible people, who do the things that you feel you would be able to do, but you can’t do when a person has a compromised mental state like this — because you can’t mind the person the way you really want to; it takes specialist care.”
“As your cognitive brain declines and is impaired, what takes over is your emotion,” Siobhan explains. “You’re no longer a thinking being, you’re a feeling being.”
She describes dementia as dividing into roughly four stages; the earliest is where a person can still converse quite well, but memory becomes a problem.
The second stage begins when a person starts to, on occasion, live in a different reality, and may think they are at past times in their life.
The third stage, often more difficult to manage at home, is where communication becomes an issue.
“This is the time people can no longer create sentences the way you or I can,” Siobhan says. “They probably see 200 words in the air and they’re trying to grab one. And it might be ‘cow’, but they really mean ‘home’.
“We would say, at this point, motions become emotions. Something like a rubbing or a pacing or a banging — there’s some kind of emotion behind that motion.”
The staff at St Joseph’s see it as their job to decipher what is troubling a person. It might be discomfort. But it is often a feeling of being out of synch with their former habits. For example, no longer taking their habitual evening walk and feeling anxious because of it.
Siobhan describes one patient who was struggling with hygiene rituals. Staff figured out had that he always had a long, hot bath every morning, finished by a steaming cup of coffee in a china cup. This ritual has now been provided for him.
“It’s about positive risk-taking. You’re allowing the person to be themselves, surrounded by support,” she explains.
The centre is not run on a schedule. Breakfast is a rolling event, people get up when they want.
“We’re working in their home, not the other way around,” Siobhan reflects. “If there’s something that’s institutionalised-looking, it’s my motto in life to take away all of that.”
Because of the financial issues, St Joseph’s is currently closed to residential admission until a monetary solution is reached. As it stands, the centre’s waiting list has over 350 entries. Even before funding issues, they might only have as many as 20 vacancies a year.
“You can’t close us down,” Siobhan reflects.
“That would be total disregard to everyone who lives with dementia in Ireland. It’s like saying that they are not worthy of proper care.”
For more info or to donate visit saintjosephsshankill.ie