The final days of Allan Jones’ life in a Bupa dementia unit left his family traumatised and raised serious questions about the standard of care. Now his widow is on a mission to protect vulnerable adults as the Health and Disability Commissioner hands down a critical report.

Anyone walking past the room could see the skeletal man on the bed, dressed only in a nappy.

He was pushed up against the side of the bed with pillows to stop him from falling out.

He moaned; confused and dehydrated.

When Ailsa Claire and her daughter walked in, they struggled to recognise him.

It was Allan Jones – a husband and father, once a psychiatric nurse and family therapist – now beardless and incoherent.

“The horror of walking into that room … he was over six foot and it was just literally a skeleton lying there with a nappy on," Claire said.

“He was groaning in pain. My daughter burst into tears.”

The most shocking detail was when Claire looked into her husband’s open mouth.

Apart from implants, the full set of teeth he had when he arrived at Bupa Northhaven Care Home dementia wing three months earlier in January 2023 were gone.

Where they went Claire doesn’t know, but she assumes they were either swallowed or spat out.

The inside of his mouth was also severely ulcerated, Claire said.

“I went to find the nurse to find out what was going on and they informed me that he hadn’t been eating and drinking for several days.

“I said, ‘Well, what have you been trying?’ And they just sort of said, ‘He’s refusing food’.

“And then his breakfast arrived, which was solid food and this was at a stage where he couldn’t swallow.”

 
After 25 years together raising a family and living mostly in the United Kingdom, Ailsa Claire and Allan Jones married in Malta. Photo / Supplied, Mike Scott

She said there was also no clear evidence he had been given fluids.

Claire, the former Auckland District Health Board (ADHB) chief executive, and her daughter focused on caring for Jones, asking nurses for a sippy cup, fluids and soup.

They sought pain relief and asked for him to be admitted into the hospital wing “because he was obviously dying”.

The pair tried to address Jones’ dehydration and discomfort themselves.

For a time he rallied, even sitting up in a recliner chair the next day.

But, the overall decline and advanced vascular dementia was set and within a week – on April 17, 2023 – Allan Jones was dead.

A health watchdog report, released today, has faulted the care provided to Jones and found Bupa breached his rights.

‘A very dehumanising place’

Ailsa Claire looks through memory books used to help her husband Allan Jones as he succumbed to dementia. Photo / Mike Scott

From her home at Goat Island, Claire has a sweeping view of the green sea and steep cliffs.

Waves roll in, slapping white against the rock, a steady pulse against the shoreline.

It was the failure of Jones’ heart that led to his vascular dementia, Claire said.

“He had an ongoing heart issue. It meant it wasn’t pumping properly, so his brain wasn’t getting enough blood.”

As the dementia’s grip tightened, Jones needed more care, initially at home before entering residential care about three years ago.

After a serious fall at another care facility, he was admitted to Auckland City Hospital with a head injury.

During that stay, doctors assessed him as needing specialist care.

His condition included behavioural and psychological symptoms of dementia. At times, this meant he could become agitated, often directed at those closest to him.

The aggravation meant Claire had to limit the time she could spend with him, including after he was transferred into Bupa’s specialist dementia wing.

Bupa promotes itself as one of New Zealand’s leading dementia care providers.

On its website, it says it was the first aged care provider to receive Alzheimer’s New Zealand’s Dementia Friendly Business Award.

“Bupa is committed to shaping New Zealand’s dementia care and ensuring that people living with dementia lead happier lives, for as long as possible. We do this by putting the person first, and understanding their individual needs.”

In the final days of Jones’ life, when Claire looked up from caring for her emaciated husband, she says she began to notice how other dementia patients were being treated.

There was little engagement with residents beyond feeding, she claims.

“If you’ve got someone with dementia, the idea is you enable them to hold on to what they know.

“So you talk to them about their life, their food preferences – you talk to them as much as you possibly can.”

There was supposed to be an activities co-ordinator. In the last week, Claire said she observed only brief and limited efforts – a moment of music, a robot dog given to one resident, another placed in front of a television playing images of fish.

She also claims there was no routine toileting and almost all residents were in incontinence pants.

One resident Claire would nod to and say hello as she passed, but she rarely got a response.

“But then he had some visitors come in and he was having a good conversation.

“The whole time he was silent because no one was interacting with him. It was awful.

In her opinion: “It was a very dehumanising place. It didn’t feel as if there was any form of personalised care or recognition that these were people who had lived full lives.”

It was time to complain.

Watchdog report faults standard of care

Former Auckland District Health Board chief executive Ailsa Claire, complained to the Health and Disabilities Commissioner about her husband’s care in a Bupa dementia unit. Photo / Mike Scott

Claire and her family took their concerns to the Health and Disability Commissioner, not for their own sake, but “to improve the living situation for current and future residents at the Bupa facility”.

She has spent decades working in health systems, including senior roles in the United Kingdom’s National Health Service and a decade leading Auckland District Health Board.

“If I, with my experience in leadership within the healthcare system, was unable to improve things and ensure dignity for Allan, then it’s clear that some significant system shifts are needed.”

The family’s complaint covered key aspects of Jones’ care, including care planning, oral hygiene, nutrition and hydration, weight loss, pain management and falls.

The investigation report by Deputy Health and Disability Commissioner Rose Wall supported many of those concerns, finding Bupa Care Services had failed to provide an adequate standard of care and breached the Code of Health and Disability Services Consumers’ Rights.

The findings pointed to a gap between what was recorded in care plans and what was delivered in practice, with inconsistencies in documentation and lapses in basic care.

It noted that an unidentified carer shaved off Jones’ lifelong beard, which may have caused him a “loss of self”.

It showed that despite his notes informing staff that Jones was vegetarian, he was fed meat on at least two occasions, and pain relief was not administered when prescribed and needed.

The Bupa Northhaven Care Home where Allan Jones' resided for the final months of his life. Photo / Alyse Wright

Bupa initially defended aspects of the care provided, citing Jones’ complex condition and the challenges of the care environment at the time, including the Covid-19 pandemic, staff shortages, Auckland floods and pay parity issues.

While acknowledging those pressures, Wall said the “onus is on Bupa to plan and manage the service provision accordingly”.

“I acknowledge that supporting older people with complex neurological conditions such as vascular dementia and BPSD [Behavioural and Psychological Symptoms of Dementia] can be challenging, but this case has only served to emphasise the importance of ensuring fulsome assessment and care planning processes are undertaken that are responsive to the evolving needs of the individual and, equally importantly, that staff providing care are adhering to the documented care plans in place.”

Bupa ultimately accepted Wall’s findings and accepted the failings of care provided to Jones.

The report recommended a formal apology to the family.

It also requires Bupa to undertake an audit of 10 resident clinical files, examining the documentation and applied care delivery across areas such as nutrition, hydration, pain management and falls risk, and to report back with corrective actions.

In a statement to the Herald, a spokesperson said Bupa “sincerely apologise” to Jones’ family for the care provided and distress caused during his stay.

“We pride ourselves on delivering quality care to all our residents and on this occasion those standards were not always met.

“We acknowledge the family’s stated purpose to attempt to improve the living situation of current and future residents, however we are saddened that their concerns were not brought to our attention at the time, as it meant we lost the ability to address those issues in real time.”

Bupa had worked hard in the last three years to implement significant changes. The care home was under new management and all the HDC recommendations had been completed.

Care staff had undergone new training and Bupa had introduced electronic clinical record keeping, which allowed “greater oversight of the resident journey in real time”.

Other initiatives included a clinical dashboard overview of each care home, with indicators for falls, complaints, pressure injuries and medication.

A deterioration early warning system had been introduced at the Northhaven facility to identify signs a resident’s health may be declining, which had helped reduce falls, concerning behaviour, pressure injuries and restraint use.

Tragedy sparks campaign to protect vulnerable adults

Ailsa Claire advocating for new laws to protect vulnerable adults in New Zealand. Photo / Mike Scott

The property on the edge of the Cape Rodney-Okakari Point (Goat Island) Marine Reserve is a place of regeneration.

Claire has spent days planting hundreds of native trees. The work was once a labour of love for Jones too.

Even as his dementia smothered him and he had in-home care, he could spend time planting, kept company by the dogs, the coastal breeze and the steady crash of waves.

It is a better memory than Jones’ final days – the skeletal figure in that room – yet Claire uses the horrible experience as motivation.

After meeting Sonia McFetridge and sharing similar stories, they are now pushing for stronger protections for people who, because of illness or disability, are unable to safeguard their own wellbeing.

Along with Sarah Hartley-House and Kathy Mansell, they have started a group called Vulnerable Adults.

“A vulnerable adult is someone who’s unable to protect themselves, their belongings, to be able to fulfil their wishes and is likely to be harmed by another individual,” Claire said.

While there was no data on who fits this category in New Zealand, Claire said UK statistics suggest the number could be about 55,000 people if applied to the population here.

“The reality is this is going to be all of us. At some time during our lives all of us are probably going to be vulnerable, whether it’s because of old age, disability or illness.”

The harm is not always intentional.

Claire recounts the story of a teenage girl overwhelmed by the care of an elderly relative.

“She didn’t know what to do with a grandmother she loved dearly but who was confused, trying to leave and incontinent.”

The girl started shouting at the grandmother and confined her to a room. The grandmother became fearful.

Thankfully, an aunt intervened.

“And it was just literally, you know, somebody who was not trained to look after someone with this level of concern.”

It was just one example of many stories Claire and the team at Vulnerable Adults have been inundated with.

“And what we’re finding is that the majority of abuse actually is psychological.

“It is shouting at people. It is restricting their mobility. It’s also about not making sure that they get their medication on time, not making sure that they go to the doctor.”

Unlike many other countries, New Zealand has no single agency responsible for investigating or responding to suspected neglect or abuse of vulnerable adults, Claire said.

The result is a fragmented system where families are often left to navigate concerns themselves.

Her group’s aim was to secure legal recognition of adult protection, establish a single agency with oversight powers, and create a clear pathway for reporting and intervention, she said.

It included the ability to remove someone to a place of safety or intervene when harm is suspected.

The team has even drafted a proposed Vulnerable Adults Protection Bill to address the gap, she said.

“This needs to become a political issue. This should be something that concerns us all.

“And so really the politicians need to hear and understand how significant this is.”

For Claire, that significance is personal.

The passing of Jones was particularly hard on their daughter, who has struggled with the memory of her father in the dementia ward.

“It’s incredibly painful for her to think about her father because that’s what she sees.

“When we were celebrating his life it was quite difficult to take those images away, to be able to celebrate what went before.

“That was the main reason why we’ve been pursuing this, because we just don’t want this to happen to anyone else.

“I think no one should die like that and no family should go through what we went through.”

Mike Scott has covered stories across New Zealand and internationally for more than 20 years. His work spans writing, photography and video and has won numerous journalism awards.