Alzheimer’s Australia have invited me to Hobart next week for their national conference. I’ll be sitting on a panel discussing the use of antipsychotics in dementia. I’m excited nervous shitting myself, as it’s way out of my league. Luckily, I’ve not been invited as a doctor — since stopping work large chunks of my medical knowledge have evaporated — but as a consumer, because of my father’s experience with the disease. And because I complained…

Towards the end of 2010, after Alzheimer’s had been chipping away at his brain for seven years, Dad reached the limit of his reserves and started down the slippery slope of advanced dementia. He became agitated, particularly of a night, and began sleeping for short bursts only, surviving on an hour or two of sleep each night. He started low dose Risperidone, an antipsychotic, which only seemed to exacerbate his distress and agitation.

Posey restraint vest

Shortly after that, we had to find urgent care for my father. Unfortunately, there isn’t much is nothing in the way of emergency care for people with dementia in Launceston, so Dad was admitted to a General Medical ward at the Launceston General Hospital. Before he was even wheeled off to the ward, whilst sitting calmly in a wheelchair, a ‘posey’ restraint vest was applied and when he reached the ward, he was tied to the bed ‘for his safety’.

Poor Dad! He’d been whisked out of his familiar environment, then strapped to a bed so he couldn’t even sit up, let alone get out and walk, and he had no idea why. Naturally, he became distressed — he was frightened. He was crying and calling out, shaking the bed, and trying to climb out. So, he was injected with clonazepam, midazolam and haloperidol to sedate him, along with oral quetiapine and risperidone. He became groggy and even more disoriented and confused. Within twenty-four hours of admission, he was unable to drink or urinate, and had an IV cannula for fluids and a catheter. Meanwhile, the reason for his admission – his sleep disturbance – and his disorientation and immobility, the cause of his agitation, remained unaddressed.

When I trained in the early 1990s, we were warned of the vicious cycle of physical restraint causing distress and agitation, thus requiring sedation, causing increased disorientation and confusion, which in turn causes more distress and agitation, requiring more sedation, and so on. I couldn’t believe that two decades later this regimen was still in use.

The thing was, Dad was still physically strong. He was only seventy and in otherwise good health. The only organ failing him was his brain. He’d lost all filters on his behaviour, so was becoming aggressive when distressed. At one stage, after the restraint had been removed, he was walking down the corridor, naked and yelling, frightening the other patients on the ward. The bottom line was, he should never have been on a general medical ward in the first place.

At the time, I spoke with every geriatrician I knew in Perth — no less than four — and all were appalled that restraints were still being used in Launceston. Restraint of the elderly (including those with dementia) is against the policy of Western Australian hospitals as it is considered dangerous and unethical. Instead of restraint, patients are admitted to secure wards, with one-on-one carers and 24-hour surveillance. They can roam at all hours of the day and night.

The Australian Society for Geriatric Medicine has a Position Statement on the use of physical restraints on their website. Part of it says:

• The use of physical restraint in both acute and long-term care settings is not supported by evidence of efficacy or safety. Thus, the decision to use an intervention of little proven benefit but which has the potential to cause harm has clear ethical, legal and clinical implications;

• There is a growing body of evidence regarding the negative consequences of restraint use including physical, psychological and ethical problems; and,

• The use of physical restraints should not be a substitute for inadequate staffing, surveillance, or unsuitable environment for the individual’s appropriate care.

My husband and I began phoning the hospital and made ourselves very unpopular with staff. We were repeatedly told the restraint was necessary for Dad’s safety, and that they didn’t have the staff to babysit him.

Eventually, after much campaigning and argument, the restraint was removed, following which we made a formal complaint to the Medical Director of the hospital. He replied that ‘the use of the physical restraint was appropriate in the clinical circumstances’, that ‘the hospital ward was not designed to safely manage a wandering dementia patient’, and then criticised my husband and me for ‘harassing’ the staff.

I couldn’t drop it. I wrote back to the Medical Director and then to the Health Complaints Commissioner, who, fortunately, decided to investigate. In December 2012 we received his Final Report. He concluded:

• that the hospital was not able to adequately manage a dementia patient exhibiting difficult behaviours;

• that they tried to stop the behaviour rather than look for or deal with the underlying cause;

• that the use of the physical restraint exacerbated Dad’s behaviour and contributed to his decline;

• that the restraint was not used as a ‘last resort’ or in ‘exceptional circumstances’ and contributed to his behaviour;

• that there is no dedicated ward for patients with behaviour that is difficult to manage in a general ward setting.

The Commissioner made a number of recommendations:

• that the hospital implement a programme of education for staff at all levels, particularly nursing staff;

• that there be a suitable ward set up for patients with dementia or a delirium, with security so that wandering can be tolerated, even encouraged;

• that all other appropriate and less restrictive measures must be attempted prior to the application of a physical restraint.

The Launceston General Hospital is now working with the Commissioner to implement these recommendations, and the Commissioner is confident there will be changes. This pleases me and makes all the hassle and angst worthwhile.

My father, like so many dementia sufferers, was a kind, gentle man, who’d been an obedient, law-abiding citizen. He would have been embarrassed by his actions, and upset that he’d frightened people. His behaviour was not him, it was his illness, and he deserved better treatment. Incidentally, he moved to Perth soon after this, and was treated appropriately and well here – not a physical restraint in sight.

So, that’s why I’ve been invited to the Alzheimer’s Australia Conference next week and I feel good, knowing I’ve helped make a difference.