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MELBOURNE: The medical profession believes Ann Dredge has an incurable disease that will soon kill her, and all that can be done is lessen her agitation and distress.

That involves giving her drugs when needed, including powerful anti-pychotics and heavy duty pain medication.

Peter Dredge has a different view: he believes his wife’s symptoms are caused by a chronic inflammatory condition and can be arrested and even reversed.

Doctors predicted Ann, 67, would be dead two years ago – Peter says that she’s alive and stable is proof the experts don’t know what they’re talking about.

The two sides obstinately stick to their views. Caught in the middle is Ann, whose life over the past three years has been a rollercoaster of rest homes, hospitals, anti-psychotic drugs, tests and alternative treatments.

“She said to me once…’just let me go’,” Dredge says. “I said ‘darling, we’re just going to try some of these things and if they show that there’s some hope . . . I’m sorry but I can’t do that’.

“I’m sure there’s days when she would go ‘I’ve had enough of this’. But if I stop, I’m euthanising her.”

Dredge is sharing his wife’s story for the series Drugging the Elderly, which has found that more elderly New Zealanders, including dementia patients in nursing homes, are being prescribed dangerous anti-psychotic drugs.

Dredge has clashed with DHB clinicians and management at various rest homes over his insistence that Ann be treated according to the Bredesen Protocol, an holistic approach to dementia developed by American neurologist Dr Dale Bredesen.

It involves regular blood tests to assess levels of hormones, heavy metals and vitamins in a patient’s system. Treatment includes various supplements and a special diet.

Ann has been diagnosed by the Bredesen team as suffering from Chronic Inflammatory Response Syndrome (CIRS) possibly due to Lyme disease contracted while visiting Fiji in 2007.

That explanation doesn’t wash with many elder care doctors, who say there is no evidence for a rheumatoid, or inflammatory, cause for dementia and prefer a palliative approach to care.

At one point a DHB dementia nurse referred Ann to a social worker over concerns she was a “vulnerable adult whose needs aren’t being met”, and there were even threats to have Peter’s power of attorney removed.

“I’m [supposedly] a danger to Ann as I’m chasing crazy theories at her expense,” says Dredge, who has a Bachelor of Science degree from Auckland University and was a teacher for many years.

“I should step aside and let the ‘experts’ take over Ann’s inevitable slide to the funeral home.”

But he says his wife of 45 years has made remarkable progress when the Bredesen Protocol has been properly implemented.

Ann, a mother of three and former university librarian with a degree in biochemistry, was diagnosed with Alzheimer’s in 2012 after several years of cognitive decline.

By 2014 she was totally dependent on Peter. In June, 2017, she suffered a delusional episode and was admitted to Waikato Hospital, where she was put on the drug haloperidol, an older generation anti-psychotic often prescribed off-label for agitated dementia patients.

“She’s lost the use of her left arm to haloperidol,” Dredge says. “It was invented in 1958. Like a lot of drugs of that era there’s huge side effects, it’s like using a sledgehammer to drive in a nail.

“When they told me this had caused the loss of the arm they seemed totally unconcerned; ‘it happens’.”

Around that time Ann entered a nursing home – the first of eight homes she would stay in as Peter searched for a facility that would meet her needs and handle her agitation without resorting to sedative drugs.

Before she went into care, Dredge says, he and Ann would ride a tandem bike.

“Six weeks later she couldn’t walk, talk – she just screamed most of the time. The doctors were saying ‘she’s looking like end stage’.”

In September, 2017, a neurologist assessed Ann for a terminal illness life insurance claim.

“Quarter of an hour into the meeting he said ‘look, if she sees Christmas I would be very surprised, she definitely won’t see March.”

But a week later she started the Bredesen treatment and improved markedly, Dredge says.

“She went from a screaming, gibbering wreck to talking, being able to interject in conversations, report the need for toileting, feeding . . . that took four weeks from the time we started her treatment.

“We knew we were on to something.”

But a doctor “torpedoed” the treatment plan, Dredge says, and Ann quickly deteriorated, spending several hours a day screaming in agitation.

She was admitted to North Shore Hospital’s psychiatric unit for the elderly, where she spent three months.

Dredge would later lodge a complaint with the Health and Disability Commissioner (HDC) over her care.

He claimed the hospital “nearly killed” his wife by giving her a “cocktail” of anti-psychotics and opioid painkillers, causing her to inhale her food and develop aspiration pneumonia.

The hospital’s response to the complaint is indicative of how many in the medical profession view dementia and experimental treatments.

Dr Andrew Brant, Waitemata DHB’s chief medical officer, told the HDC Ann was diagnosed on admission as being at the end stage of Alzheimer’s disease.

She was unable to walk or talk, constantly yelled and screamed and was unable to respond to her environment.

The palliative care team was brought in and she was prescribed morphine and the anti-psychotic olanzapine​.

Brant said the unit’s lead psychiatrist, Dr Rob Butler, and his registrar, read up on the Bredesen Protocol after being supplied information by Dredge.

“It has not been subject to randomised controlled trials and is not approved by the FDA (US Food and Drug Administration), nor does it appear in a recent international guideline for managing Alzheimer’s disease,” Brant wrote.

“It is not an approach advocated by Dr Butler’s peers.”

Butler had also sought advice from a rheumatologist who visited Ann and concluded there was “unlikely a rheumatoid source behind dementia”.

Brant said it was explained to Dredge that Ann’s Alzheimer’s was severe, while the Bredesen Protocol was advocated for use in the early stages of the disease.

“We explained that… the brain damage was too advanced to be reversed and the key to good treatment was to reduce agitation and distress as much as possible,” Brant wrote.

HDC deputy commissioner Rose Wall found in the hospital’s favour, saying she considered Ann was given the drugs to “comfort her pain and distress”.

Wall noted that Dredge had been feeding Ann food that had not been pureed and liquids that had not been thickened as recommended by staff.

“Clinical records . . . suggest you acknowledged the finely chopped foods and thin fluids you had given her may have contributed to the pneumonia developing.”

Wall told Dredge that while everyone had the right to have services provided “in a manner consistent with their health needs . . . this does not mean that patients or a patient’s power of attorney can dictate treatment which is contrary to a doctor’s clinical judgment”.

In June, 2018, Dredge moved Ann to Kumeu Village in West Auckland, a luxury care home and dementia hospital.

Dredge’s relationship with management quickly broke down. Dredge claimed they didn’t implement the Bredesen Protocol as promised, and the home asked him to remove his wife from the facility after about three months.

Dredge says at one point, a GP advised that Ann would soon die and the best course of action was to sedate her so she was not so distressed.

The drugs would suppress her appetite and she would likely contract aspiration pneumonia. Dredge claims this was effectively a plan to euthanise his wife.

The home called in a Waitemata DHB dementia nurse specialist to assess Ann’s care.

The nurse noted that Dredge “seems to think Ann was able to be cured” and had claimed she had shown some improvements.

“Because of this he does not want her to have any medication that may cause sedation,” the nurse wrote.

“There has been no functional improvement and Ann remains at an advanced stage of dementia where she requires comfort care. Peter does not agree with this,” the nurse wrote.

She noted that she’d sent a referral to a community social worker “as I feel Ann is a vulnerable adult who is not having her needs met”.

Dredge also took a complaint to the HDC about Kumeu Village over its refusal to co-operate with the Bredesen Protocol.

The home’s clinical team told the HDC that staff could not administer the supplements and medications because they hadn’t been prescribed and it was not known what was in them.

“[Mr Dredge] has given us a chart with all the supplements he is mixing together – the supplements come in a tiny container with no dates, names, ingredients, expiry dates, GP names,” the team wrote.

“Our registered nurses refuse to administer any of these items . . . without a supporting prescription.”

They said at no time had Ann’s care been compromised.

“Mrs Dredge needed more specialised care,” the team wrote. “However Mr Dredge would refuse advice from specialists and our GP. This made it very difficult to care for Mrs Dredge.”

They claimed Dredge was “hostile” towards staff. He says this is untrue, and that he got on well with them.

Wall said in response to Dredge’s complaint that she was not critical of staff for not following the Bredesen Protocol.

They had tried to get information from Bredesen specialists in Australia but it had not been provided.

“Clinicians are obligated to follow current best practice in New Zealand, and I note [Kumeu Village] attempted to look into your preferred treatment course, but were unable to satisfy themselves that this would be clinically in your wife’s best interest.”

Dredge is scornful of the HDC’s response, saying it failed to defend Ann’s rights under the Health and Disability code.

“She clearly was following a different path to the normal Alzheimer’s patient. She was entitled to the benefit of the doubt,” he says.

He disputes the claim that the home didn’t have information about the supplements he wanted Ann to take – it was provided with a wealth of test results and information about the treatment plan from the Bredesen team, he says.

Dredge says the Bredesen Protocol is “solidly science based” with plenty of research papers backing it up, but many doctors are stuck in a “20th century” mindset.

“I’m frustrated at the seeming inability of these doctors to read the science.”

Dr Mark Fisher, a psychogeriatrician with Auckland’s Hinengaro Clinic, which specialises in dementia prevention and management, says he can’t comment on the Bredesen Protocol but there is evidence that a combination of dietary interventions, cognitive stimulation and exercise might slow the progression of Alzheimer’s.

“This is not something that’s well understood or managed, mainly in the DHB sector.

“The role of inflammation in dementia . . . is perhaps under appreciated by many clinicians.”

Old age psychiatrist Dr Matthew Croucher, a clinical advisor to Alzheimer’s NZ, says there are some “good ideas” within the Bredesen Protocol, such as inflammation and micronutrient deficiency being two of a complex array of factors causing dementia.

“What is absolutely and unequivocally not yet demonstrated is that there is any significant benefit and no significant harm to people with dementia on average from an expensive panel of tests and related interventions across the board.”

Dave Jenkins, a retired New Zealand doctor living in Indonesia who is part of the Bredesen team and has advised Dredge, says it’s difficult to do large-scale controlled trials for the protocol because it doesn’t fit traditional testing parameters.

​But there is plenty of evidence of the protocol’s efficacy he says, including a study of 100 Alzheimer’s patients, nine of them from New Zealand and Australia, who showed cognitive improvement.

“It’s understandable why people think there’s no evidence,” Jenkins says. “But most of those people haven’t read the . . .underlying science behind it.”

The protocol is designed for pre or early-stage dementia and Jenkins says Ann began the treatment “far too late”.

In her case, stabilisation is the first objective.

“But she is relatively young, which means her ability to grow new neurons and pathways is much better than if she was older. In fact she has recovered some cognitive function.”

Ann is now at a rest home in Taupo, while Peter, who is running low on funds and lives in a mobile home, spends most of his time helping with her care and researching treatments.

She has been weaned off most of the medication she was on in Auckland, but receives a small dose of the anti-psychotic risperidone​ when needed.

She is mostly confined to a wheelchair and is currently in a foggy state, sleeping much of the time, which Dredge suspects is because of elevated levels of a protein involved in the immune system.

“We’re finally at the stage where we have enough stability to begin properly investigating what’s wrong. It’s been such a rolling s… fight that we are two years behind schedule,” he says.

Even some of his supporters have questioned his stubborn refusal to follow accepted wisdom around treating Alzheimer’s.

“They go ‘are you sure it’s worth it?’ When you tease it out, what they’re saying is, ‘she’s dying anyway, why are you doing this?’

“I go, ‘if I stop this, we know one thing: she will die in short order’.

“This is uncharted territory, we do not know what the outcomes are. If you look at the [medical] code of ethics, it says, ‘if you’re not sure, give the patient the benefit of the doubt.'”