Susan Sypkens first noticed something was amiss with her husband, John, 15 years ago, when he started to forget small details and lose things.
"It's a series of losses, in a way," Mrs Sypkens says. "But the most difficult thing [for him], I think, was when they took his driving licence away."
A tall, good-looking, fit and intelligent man who had once been a world champion rower and enthusiastic skier, John soon began to lose more of himself. The couple was forced to sell his beloved ute. Then, when he could no longer row alone, they sold his single-scull boat.
"With each loss, it seemed to make the Alzheimer's worse. The total loss of independence was just devastating."
Finally, after a holiday to the Himalayas in 2008, it became clear she needed more help.
The couple moved to Victoria from Armidale in NSW to be closer to their adult children. Mrs Sypkens researched nursing homes, inspecting and rejecting a dozen before settling on one in Melbourne's outer east, and John moved in at the beginning of 2011.
But once inside, John's life quickly unravelled.
He was distraught at losing his freedom. Confused, he began to wander the corridors, trying to open doors and pressing his face against glass windows. Other residents didn't take kindly to his habit of entering their rooms in search of a way to escape, and there were distressing incidents in which staff dragged him from other people's rooms. During one such scene, John lashed out and struck a staff member.
Recalling this, Susan's voice wavers. Staff gave John an injection of Haloperidol, a powerful anti-psychotic that dropped him to the floor. Afterwards, he was given so-called "chemical restraints" – antipsychotic drugs routinely used to pacify dementia patients in nursing homes.
Those drugs also dramatically increase the risk of stroke in elderly dementia patients, and that's what happened to John.
He suffered a major stroke, losing the use of the left side of his body, the power of speech and the ability to walk. Distraught, Mrs Sypkens engaged a private physiotherapist – at John's nursing home, there was just one physiotherapist for 40 residents – who recommended daily exercise to help John to rehabilitate.
But she says staff told her they didn't have the resources to pour into daily rehabilitation exercises for one patient, "the underlying assumption being dementia patients are not worth rehabilitating".
Meanwhile, John continued to be dosed with antipsychotics. Despite having power of attorney over John's affairs, it took Mrs Sypkens two months to get the nursing home to stop dosing him. Only after lodging a Freedom of Information request could she later find out exactly what he had been given.
In January last year, less than three years after being admitted, his muscles weakened by the stroke, John choked to death during a meal.
While John's experience was dreadful – and not uncommon – international experience shows Australia could do better. Scandinavian countries, for example, increasingly incorporate peaceful gardens and outdoor spaces into their nursing homes so dementia patients can wander around.
Mrs Sypkens says providing adequate diversional therapy for all dementia patients, and improving staff training, pay and workloads, would also help. And she says the use of chemical restraints should be re-examined.
Last year, Alzheimer's Australia released a study showing that up to 80 per cent of dementia patients in aged care facilities are being treated with psychotropic drugs.
"I always feel that had he not been given the anti-psychotic drugs, and been allowed to wander round he would have been so much happier and he would have died of natural causes like a heart attack," Mrs Sypkens says.
