Ethel Geraldine Anderson, known to some relatives as “Aunt Gerry,” died after being given increasing doses of Zyprexa at a Wellesley St. nursing home. Her widower, Clayton, says he was never informed about the drug’s potentially lethal effects on people with dementia, and wouldn’t have consented to its use.

Ethel Geraldine Anderson ; known as Aunt Gerry to her loved ones ; is among such cases. Andersons niece told the Star they tried to quiet her down with doses of olanzapine in the Wellesley St. nursing home where she was living. Four months later, she was dead.

Elm Grove nursing home in Parkdale, a 126-bed facility, gives 56 per cent of its residents antipsychotics.

At a home in Bourget, a quaint village east of Ottawa, 73 per cent of the residents are being prescribed the drugs.

And at Woodland Villa, another home near Ottawa, 65 per cent of residents are on antipsychotics. Pat McCarthy, the CEO of the company that owns the home and two others with high rates, said a nurse shortage has contributed to an over-reliance on drugs to handle elderly patients with dementia.

The numbers make me ill, said Liberal MPP Donna Cansfield, who has called on her partys government to review the use of antipsychotics in Ontarios nursing homes. Its wrong. I think its too high. I’m very concerned. We have a problem; we need to deal with it. That’s our responsibility as government.

The province tracks the number of residents on these pills home by home, but much of this information hasnt been publicly reported, the health ministry said.

Cansfield spent months working back channels at Queens Park to obtain the data, which she shared with the Star after raising the issue with Premier Kathleen Wynne and Health Minister Deb Matthews. She says officials have acknowledged the problem but she has seen no action yet.

The head of the organization that represents most Ontario nursing homes also acknowledged the problem: We know we need to do better. Seniors deserve better, said Candace Chartier, CEO of Ontario’s Long-Term Care Association.

When antipsychotics are prescribed to seniors with dementia, its known as off-label use, meaning a drug is being used for a condition or age group for which it hasn’t been approved. Its legal for doctors to do this, and they do so with little oversight.

These medications are being used as a routine, when they are extremely powerful and are not proven to work for seniors. Its very scary, said Jane Meadus, a lawyer at the Advocate Centre for the Elderly, a community legal clinic for low-income seniors. They (can) have horrible side effects on people, and they may in fact cause the very symptoms that they are supposed to be eradicating: violence and confusion.

While some residents in Ontario long-term care homes may suffer from schizophrenia, bipolar disorder or another condition that antipsychotics are approved to treat, most ; 63 per cent ; suffer from dementia. At Golden Plough Lodge in Cobourg, more than 90 per cent of residents have some form of dementia.

A Star analysis of the data found that there are thousands of seniors on potentially dangerous medications not approved for their condition.

In one case, an 85-year-old woman with dementia was on risperidone and other drugs to help control her wandering ; an off-label use ; in a long-term care home when she took a bad fall and died. (Risperidone is approved to treat only dementia patients with severe psychosis or aggression.) The Ontario coroners office said the drugs she was inappropriately prescribed played a role.

Among other Canadian cases, the Star found reports of side-effects that do not specify where the deaths occurred.

• In one case where clozapine was prescribed to a 70-year-old man with dementia, the result, according to the doctor who filed the side-effect report, was death.
• A man died after he was prescribed quetiapine for dementia, and the 2012 side-effect report listed the reactions to the medication: Off label use. Cardiac failure.
• In 2012, a doctor prescribed olanzapine to an 81-year-old woman for patient restraint. She suffered a stroke, fell and died. The report cited the off-label use of the drug.

As part of a lawsuit filed in Alberta, a court was told in 2009 that a 61-year-old Alberta woman with Alzheimers disease was prescribed an antipsychotic as a chemical restraint. She died from what the coroner found to be an allergic reaction to olanzapine.

Nursing homes are required to obtain informed consent from patients or their substitute decision-makers before prescribing antipsychotics. Ethel Andersons husband said doctors never got his consent to administer olanzapine, which was backed up by a subsequent investigation.

MPP Donna Cansfield wonders how many prescriptions are written without the consent of residents families or a full understanding of the risks.

Are (families) made aware of other (treatments) or are they simply told, Grandpa is agitated and the only way we can calm that agitation is with the use of a drug?

The provincial College of Physicians and Surgeons will not say if the doctor in charge of Andersons care was cautioned or ordered to undergo retraining.

Statistics obtained by the Star show antipsychotic use rates at 631 nursing homes in the first half of 2013 averaged 33 per cent.

That’s more than twice the rate found in a recent U.S. review that resulted in a call for change. The U.S. probe of Medicare prescriptions found 14 per cent of elderly nursing home residents had claims for atypical antipsychotic drugs. The office of the Inspector General, whose mission is to deter waste and abuse, declared the ssprevalence of these unnecessary drugs was too high and recommended the federal government fix the problem.

Serious aggression and extreme violence are not unknown in Ontario nursing homes. In November, an 87-year-old resident of a Scarborough nursing home was beaten to death; his 81-year-old roommate was charged with second-degree murder.

Despite the risks, antipsychotic medications can be an effective treatment for patients who have severe aggression, agitation or hallucinations caused by dementia ; symptoms that make the resident a danger to himself and others.

Clinical guidelines do recommend risperidone and the off-label use of olanzapine and a drug called Abilify in severe cases of dementia-related behavior.

The potential benefit of all antipsychotics must be weighed against the significant risks such as cerebrovascular adverse events and mortality, the guidelines say.

However, one expert estimates that only 10 to 15 per cent of dementia patients suffer such severe problems, suggesting that far more residents than necessary are being put on the drugs.

There is a role for these medications, but probably not at the rate that they’re routinely prescribed in nursing homes, said Dr. Dallas Seitz, a geriatric psychiatrist and professor at Queens University.

At Miramichi Lodge in Pembroke ; a 166-bed facility where more than half of the residents are on antipsychotics, according to the data ; managers say 30 of their residents have dementia and are on the popular drugs as a last resort to treat aggressive behavior.

When taken by patients with dementia, the risks of fatal side-effects such as heart attack are significant enough to justify the drug companies black-box warning.

More common side effects, which drug safety experts say can have a devastating impact on fragile and vulnerable seniors, include falls, sedation and movement disorders.

Several homes with high rates told the Star they are trying to get their prescribing rates down. Where possible, they want to devote resources to behavioural therapies, whereby caregivers are trained to identify and neutralize what triggers agitation in residents with dementia. Triggers may include hunger or physical contact in common living areas.

At Revera Inc., which owns more than 50 homes and had an average antipsychotic prescribing rate of 35 per cent in the first half of last year, executive Joanne Dykeman says staff have focused on treating without drugs. The prescribing rate has gone down several percentage points company-wide.

Some homes say they do not have the resources for the training and new hires often needed for more intensive, time-consuming therapy.

At Maple Villa Long Term Care Centre in Burlington, where the antipsychotic prescribing rate was 57.5 per cent in the first half of 2013, administrator Barb Goetz acknowledged, We are above the provincial average by far.

But she added that her homes current internal data show only 45 per cent of residents are on the drugs, and one-third of those are medicated for behavioral management.

Id like to think its going to decrease, but to be realistic, I don’t know, Goetz said. Some people will say to us, Cant you just do a one-on-one with people when they’re being aggressive? We don’t have the funds to do that.

The Ontario government has poured millions of dollars into hiring and training front-line workers to provide better care for residents with dementia and mental health issues.

After a 2011 Star investigation into widespread abuse and neglect in Ontario nursing homes, the government spent $59 million to hire more than 600 employees and train 34,000.

The efforts appear to have done little to ease most nursing homes reliance on these powerful drugs for managing troubled residents behaviour.

We’ve been advocating for more resources, for more skilled staff, more training. We think its very timely for the ministry to make this investment, said Candace Chartier, CEO of the nursing home association, adding that a behavioural support team should be in every home.

At Leisureworld, the St. George St. home that, at 67 per cent, had Toronto’s highest rate of antipsychotic use, managers said a main reason for it is beyond their control.

Marg Toni, a Leisureworld vice president, said many new elderly residents come to the home already on antipsychotics prescribed by a family or hospital doctor ; a point underscored by managers at other homes. We have been diligently working on reducing the use of these medications, Toni said.

Toni added that her Leisureworld home is atypical because many of her residents aren’t actually seniors; they’re people under 65 who have been diagnosed with mental health issues but have nowhere else to go.

Leisureworld St. George is one of five homes in Toronto with prescribing rates at 50 per cent or higher.

A 2007 study found people living in nursing homes with high prescribing rates were three times more likely to be dispensed an antipsychotic than those in other homes.

Whats . . . available and acceptable to clinicians is medications, which may not be the best thing for the resident but may be the only thing easily available, said geriatric psychiatrist Dr. Seitz.

We know its high, said the director of care at Residence Champlain in eastern Ontario, where antipsychotic use is 67 per cent. Were working hard. We know there’s some side effects. We know its not the best medication for (some) residents. We know we need to be careful. We need to have our number as low as possible.

Caressant Care ; the company that owns a nursing home in Bourget where 73 per cent of the residents were on antipsychotics in the first half of 2013 ; says staff perform in-depth reviews to ensure medications are appropriately prescribed. The company said it is in favor of more funding for behavioral therapies for seniors with dementia.

The health ministry told the Star: Improvements have been achieved . . . but more needs to be done and the ministry continues to work with the (long-term care) sector to identify strategies to provide quality, safe and appropriate care to residents.