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Dementia care: 'Impossible to believe my dear wife wasn't slowly starved'

Nicholas Jones
By
Nicholas Jones

Political Reporter

He thought his wife would be looked after. What happened left him grappling with grief and anger. Nicholas Jones investigates.

The illness first showed itself at work. Ana's boss would repeat an instruction, but her brain wouldn't hold onto the conversation.

It was embarrassing and confusing. She'd get home and cry in distress, her husband, Ross, remembers.

They saw their GP, then drove from Havelock North to Napier for an appointment with a specialist. "Repeat after me," he told Ana, and made a fist on the table, unfurled it to place the hand palm downwards, then rotated 90 degrees so only the pinky finger touched the surface.

Those three simple steps were beyond her.

"I said, 'Oh, come on - you can do that,'" says Ross, remembering his disbelieving, nervous laugh.

"The neurosurgeon looked at me and said, 'This is not funny.' I got up and sat behind them . . . she was there for maybe 45 minutes. We both walked back to the car bawling our brains out."

Ana (names have been changed at the request of her family) was 62 when diagnosed with Alzheimer's disease in 2013. There was about six years of short-term memory loss before then.

A few months after the diagnosis she and Ross flew to Europe for a 14-day Mediterranean cruise. Barcelona. Venice. A train through Austria, to Amsterdam and on to England to see friends made in more carefree days.

Back home, she spent more time at the Chatham Club, a charity that supervises people with dementia, who socialise, bake, do craftwork or watch movies. That gives their carers - often husbands and wives - a badly-needed break.

Alzheimer's disease slowly shrinks the brain and is the most common form of dementia, an umbrella term for conditions that lead to a decline in thinking, behavioural and social skills.

Early signs of the disease include forgetting recent events. Later on, people lose the ability to do everyday tasks. Drugs may improve or slow the progression of symptoms, but there's no known cure.

"It was little things," Ross says of his wife's decline. "We went over to Taupō in a motel with another couple. We were getting ready to go in the morning, and she was in the bathroom. I said, 'Are you ready to go yet?' She said, 'Yeah, hang on'. I went in and she had her toothbrush in her hand, putting toothpaste on it, and then dabbing it on her face."

Ana moved into a rest home for full-time care not long afterwards. Ross got permission to take her back home for a few hours, but it was a place she no longer recognised.

"All she wanted to do is stand by the gate, to go back to the rest home," he says.

"Those years since she got diagnosed were just horrible. Different degrees of horrible. Probably once a month I'd walk out of the rest home crying my eyes out. It was just so sad."

Her care was very good, but after 16 months in the home, she hit a staff member (people with advanced dementia can sometimes become aggressive or violent).

Rest home management deemed her behaviour too challenging, and she was sent to a nearby and more specialised facility, Colwyn House Lifecare, which is run by Heritage Lifecare, one of New Zealand's biggest aged care operators with nearly 40 facilities.

By this point, Ana recognised her husband only every other time he visited. She lost the ability to speak, and often wouldn't eat her meals, closing her mouth when offered food.

Refusing food and drink is common among people with advanced dementia, and aged care staff should be alert to this, and trained in how to respond.

Ana had since 2017 been prescribed Ensure, a chocolate-flavoured nutritional powder that's mixed with water.

She weighed 56kg on admission to Colwyn House, and dropped just under 10kg over the next four months. Ross asked staff members what was happening, he says, but was assured that records showed his wife was receiving the nutritional shakes three times daily.

The truth emerged when one of the couple's four adult children visited from Australia. She was appalled by her mother's condition; slumped in a chair without the strength to move.

"One of the staff members said, 'Look, it's not my place . . . but for some reason they have reduced Ana's Ensure down to one scoop," Ross says. "I went and saw the manager straight away."

An investigation by the facility confirmed two of Ana's nurses had wrongly assumed one scoop of Ensure should be dissolved with water. In fact, a single serve required six scoops.

Ana died of complications from dementia the next month, on May 9 2019. She was 68.

"I find it impossible to believe that my dear wife wasn't slowly starved, resulting in her dying before she otherwise would have," Ross later told the Health & Disability Commissioner (HDC), the government watchdog that investigates complaints about healthcare.

"Heritage Lifecare needs to be held responsible for negligence."

The aged care sector is pushing for better pay for nurses, amidst a severe staffing shortage. Photo / 123rf.com
The aged care sector is pushing for better pay for nurses, amidst a severe staffing shortage. Photo / 123rf.com

Problems found at other homes

What happened to Ana isn't unique. Rest home audits and other government documents show recent failures such as a lack of response to significant weight loss at more than 30 other facilities.

At one Gisborne facility, for example, a resident dropped more than 5 per cent of their body weight in a single month but no documented action was taken. At another home, a dementia patient who dropped weight was given drugs to reduce violent behaviour, and auditors found them "over-sedated to the point they were unable to keep their eyes open, let alone feed themselves".

HDC complaint investigations released since 2018 include six cases when a resident died soon after staff failed to properly respond to severe dehydration or lack of food intake.

Investigators generally couldn't say whether this contributed to their deaths, because the patients were very sick with other conditions including advanced dementia, which often causes unavoidable weight loss near the end of life.

However, the oversights were serious. The cases include:

Staff at Elloughton Gardens in Timaru didn't respond to clear signs of dehydration in a patient with severe dementia, including when she was in isolation for suspected scabies.

A woman at an unnamed facility died after being sent to hospital with sepsis from infected bedsores. The rest home's staff didn't consider nutritional supplements despite her loss of appetite. Visitors noticed her weight loss and a friend gave staff supplement drinks to give her, but this happened only once.

Workers at an Oceania home didn't do enough to manage a resident's poor food intake and dehydration. She died after a heavy fall. The dehydration "significantly contributed to her deterioration and eventual demise", the HDC concluded.

A terminally-ill man at a Pukekohe facility operated by Heritage Lifecare had maggots hatch in his open leg wounds. The 86-year-old lost 9.5kg within a month but this wasn't properly monitored or responded to. A nurse employed as the clinical services manager told investigators her workload was "impossible".

A diabetic 80-year-old with Alzheimer's disease and delirium refused meals and drank little during two weeks of respite care at a home operated by Radius Residential Care, during which time he was often restrained with a lap belt. No proper evaluation of his not eating was done, his blood sugar levels weren't monitored, and a can of nutritional supplement provided by his daughter was returned unopened. He died of dehydration and high sodium blood levels within a month of discharge. There weren't enough senior staff working over the holiday period, investigators found. "It was very hectic working in a psychogeriatric ward with more than 19 patients with inexperienced staff and a lack of skill mix making things worse," a nurse told them.

In Ana's case, a care plan wasn't done until almost five weeks after her admission, and only partially so - the "oral meals and drinking" section left blank, despite her history of gradual weight loss and severe dementia.

The facility had a policy that if a resident lost more than 5 per cent of their body weight in a month then urgent steps must be taken, including alerting a doctor and starting a detailed record of how much fluid and food is consumed.

That didn't happen, despite Ana meeting that threshold in December 2018 (8 per cent of her body weight lost), and again in March 2019 (nearly 11 per cent).

"In the six months that [Ana] resided at Colwyn House, nursing staff failed to ensure she was receiving her nutrition supplement as per her prescription, and failed to follow up on two significant periods of weight loss," deputy Health and Disability Commissioner Rose Wall concluded in a report that found "multiple failures".

Wall wasn't able to say the extent to which the problems with the Ensure contributed to Ana's weight loss, who, she noted, "had a complex medical and behavioural history, and even if she had been given the correct serving of Ensure each time, she may still have lost weight".

"Nonetheless, it is clear that the failure to provide [her] with Ensure in accordance with her prescription, and the failure to follow up on her weight loss, are two instances where Colwyn House failed to provide [Ana] with services with reasonable care and skill."

Expert advice was given by Rachel Parmee, a highly experienced nurse. She found "clear evidence in [Ana's] weight loss that the supplement was not sufficient to maintain her weight. This evidence should have triggered further assessment".

"I believe there to have been a severe departure from the standard of care in terms of the effect on the health of a vulnerable resident."

Colwyn House accepted the findings. The case had been used for educational purposes at the company's regional seminars, it said, and a new "nutrition and hydration" policy was created.

It apologised to Ana's family. Ross's anger is reserved for management, not those who cared for his wife.

"I'm not saying it was the weight loss that killed her. I'm not a doctor, I can't say for sure. But I certainly think that losing that much weight, that quickly, would have contributed to her death.

"She didn't know how to talk to people. She couldn't say, 'I'm hungry'."

Failures not widespread: expert

The steps that should be followed when a resident loses a large amount of weight were laid out in sector guidelines in 2008, developed by a team including Dr Michal Boyd.

Boyd is the chair of Dementia Auckland and an Associate Professor with the school of nursing and department of geriatric medicine at the University of Auckland, and has helped lead major research projects, including into care for dementia patients nearing the end of their life.

She also works in aged care facilities as a gerontology nurse, a frontline job she's done for 30 years.

"When somebody is losing 5 per cent of their weight in a month, or 10 per cent of their weight in six months, that should be the signal - the 'Oh, we've got something going on here,'" Boyd told the Weekend Herald.

A first step is laboratory tests and a physical exam, including checking teeth and swallowing. High-calorie foods are increased, and if weight is still lost a dietician consulted and supplements such as Ensure possibly used.

If that doesn't work Boyd considers cachexia, a near-death condition where a person can't absorb nutrients, even if they are given.

"This is not just people not getting fed," she says of the condition. "Cachexia is different from starvation . . . it is not uncommon for people to lose weight if they are approaching death.

"Dementia is a terminal illness. It is a failure of the brain, just like other diseases are a failure of the heart, or a failure of the lungs.

"This is a very complex disease and a very complex situation towards the end of life."

Boyd began her career in her native United States, at a time when feeding tubes were used in such situations. That caused more harm than good, she says, including because people with advanced dementia often lose the ability to swallow.

"There was more aspiration pneumonia. There was more distress."

The response to Ana's weight loss was deficient, says Boyd. However, she doesn't believe such failures are widespread.

"I really don't . . . there are more than 35,000 people in residential aged care right now [in more than 650 facilities] . . . we're talking about a very small percentage of people who aren't getting the care they need."

Media reports that focus on problems and not the usual high-quality care wrongly give the impression that aged care is a horrible place, she says.

"It is not. It is actually where people with end-stage dementia get the care that they need, because their families cannot do it.

"It is an unreasonable expectation for anybody to care for someone with end-stage dementia. They do need 24-hour care."

Nurses generally earn more working in public hospitals or other DHB roles. Photo / Michael Craig
Nurses generally earn more working in public hospitals or other DHB roles. Photo / Michael Craig

A quarter of residents restrained

About the time Ana was at Colwyn House, authorities became concerned about its staffing, following another disturbing case of poor care.

In 2019 a healthcare assistant helped an elderly woman with advanced dementia to her room. They did so alone, despite the woman's care plan warning she was at high risk of falls and needed a minimum of two people to assist her.

The woman took small, shuffling steps but was moved at a pace that appeared faster than she could cope with. She fell heavily. The assistant initially stood over the woman with her hands on hips, looking frustrated.

During the seven minutes that the woman was on the ground, they didn't hold her hand or give physical comfort, a pillow or blanket. The woman's dress remained almost up to her waist.

An investigation by the HDC found the healthcare assistant wasn't trained in dementia care or how to prevent and respond to falls. They were under pressure that night - staff shortages meant there were mostly just two healthcare assistants for 20 residents.

Colwyn management discovered the incident when reviewing CCTV footage and suspended the worker for what it considered an act of abuse, and contacted the police and ministry.

However, in October 2019 Hawke's Bay DHB launched an investigation into clinical safety at the rest home, after allegations by two whistleblowers - Colwyn's interim facility manager and a DHB mental health worker - that centred on short staffing.

Some staff weren't using approved techniques to handle patients because doing so took too much time, it was claimed. A number had no dementia-care qualifications.

Alongside the whistleblower allegations was a damning audit, done for the ministry as part of its regular monitoring of aged care homes.

Families were worried about staffing levels, there was a high rate of falls, and residents were often physically restrained - a practice meant to be a last resort to control behaviour like wandering, and which facilities are expected to use sparingly.

"Six carers without qualifications in the dementia wing is worrying," a ministry official wrote to the DHB in an email, released under the Official Information Act (OIA). "10 of the 41 psychogeriatric residents are on restraint - that's 24 per cent, almost a quarter of the residents!"

Heritage Lifecare told the Weekend Herald that Colwyn House had implemented all recommendations made by HDC investigations and reviewed its procedures.

"Since the investigation, we have appointed a new management team and continue to work with families and the DHB to improve the level of service to all residents," a spokesperson says.

Colwyn House passed a ministry certification audit in 2021, and has also been reviewed by the Ombudsman's Office as part of wider monitoring of dementia facilities.

"Neither of these reviews identified any issues with prescribing or nutrition management."

Andrew Little: "All parts of the health sector are suffering a shortage of nurses." Photo / Mark Mitchell
Andrew Little: "All parts of the health sector are suffering a shortage of nurses." Photo / Mark Mitchell

Aged care 'on verge of collapse'

The sort of staffing pressure alleged at Colwyn House is of growing concern in a sector looking after our most vulnerable.

A long-term shortage of nurses in aged care has become a crisis after Covid-19 shut borders and created fierce competition for workers in New Zealand.

Aged care is short of 1000 registered nurses and workers are doing double and even triple shifts - 24 hours straight - to plug gaps, and some facilities are breaching their contract by not having a nurse at all times in hospital-level areas.

The director-general of health was notified of 851 incidents last year when an aged care facility didn't have enough nurses to ensure the safety of residents - a 227 per cent increase from 2020.

In recent months a shortage of nurses has forced 20 facilities to close all or some of their hospital-level beds.

Aged care nurses are generally paid about $10-15,000 less than a hospital nurse. Simon Wallace, chief executive of the Aged Care Association, which represents facility owners, expects that to widen to as much as $20,000 when a DHB nursing pay equity deal rolls out in July - driving more nurses from a sector "on the verge of collapse".

"We will, unfortunately, have cases of inadequate care because of a lack of staff. And that is regrettable.

"We are going to close more beds and these people will start clogging up the public hospitals because there won't be anywhere else for them to go. The Government does not want to have that on their hands with Omicron."

The Aged Care Association is part of a new coalition urging Health Minister Andrew Little to introduce pay parity for nurses. It includes Age Concern, Grey Power, the Nurses Organisation and Alzheimers NZ, whose chief executive Catherine Hall warns the "dire" nursing shortage "is a significant issue that puts the care and wellbeing of our older people at risk".

Little says he's already instructed officials to urgently work on pay parity, but it's unclear when that will happen.

The claim aged care is on the verge of collapse is "catastrophising", he says.

"All parts of the health sector are suffering a shortage of nurses. It has been a long-building problem but I am satisfied at the measures we are taking to address it."

The nursing workforce grew in the past three years, the ministry says, and measures to further boost numbers include a voluntary bonding scheme, funding for study, a one-off residency pathway, and major recruitment campaigns.

Other reforms include a new Aged Care Commissioner position, wrapped into the existing HDC and who will investigate rest home complaints and, according to the Government, "lead much-needed systematic change in the sector".

Seniors and Associate Minister of Health Dr Ayesha Verrall told the Weekend Herald the vast majority of people in rest homes get high-quality care, "however there are times when the care falls short", which is "deeply troubling".

Do nursing shortages risk more cases of poor care?

"If I reflect on my time as a clinician, I would say that there is a link," Verrall says.

"But it is always more complicated than that. Whenever you look back on an example of where care hasn't been up to standard, you find, yes, instances of people under pressure, but also instances of basics - in terms of how you check, or your processes, or your infection control - that were also part of whatever mistake was made."

The soft one

It was 1973 and Ross was working on the oil rigs off Hāwera when friends arranged a fateful blind date.

"We went to the stockcars . . . nine months later we were married."

Ana was the first woman to be a qualified railway station master in New Zealand, based at Ōpunake. She was extremely driven, her husband remembers, but "soft, very gullible, such a loving mum and gran".

"I was the hard one. She was the soft one. She was a lovely, lovely mum and wife."

For a time those memories were dulled by the grinding despair of her illness, and the flood of anger after her death.

To reclaim them he watches old home movies - a camera-shy Ana hiding behind a tree as their young kids run around the front lawn; walking with her granddaughter holding head-sized candy-floss.

"For the past couple of years all I've been thinking about is Colwyn House. The mistakes made.

"I've had trouble remembering what our life was like before she got sick. But it wasn't always like that. She was great fun."

One moment comes back to him. It was during a golden year when they lived in England, after their kids had grown up. The world was wide open.

"We got a bus down to Surrey, and were on the top deck leaving Cambridge. Right up the front. I held her hand and said, 'Isn't this neat. You and me, by ourselves, going from one place to the other'."