'Dementia is not a living death'

When her father was diagnosed with dementia, Arifa Akbar embarked on a journey through an abusive and negligent care system

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My father turned 81 in May, but in a weary mood he will insist he is anywhere between 85 and 150. Sometimes he thinks he is living in a submarine off the shores of Norway, other times in Shimla, India, where he was born, or Lahore, where he was raised.

In reflective moments, he looks to the ceiling and says it's going to rain, as if he can see clouds gathering. He tells me his father is watching him, pointing to the small shaving mirror, at his own reflection. When he's agitated, he shouts for hours.

There are periods when he is lucid and warm; he'll tell me I need to eat more, get more sleep. "What's the name of the newspaper you work for?" he'll ask. Then, as I'm about to leave, he'll say, "Am I dead? Did you bring my death certificate?"

This is what dementia is like for him. Having spent years observing his illness, I realise it is nothing like the cliché of the "living death", as it is often called. His brain might be sending the wrong signals, but it also seems to be working overtime, imagining unfeasible things with little distinction between what is happening in the real world, and in his own head.

The first signs of this confusion emerged a decade ago when he gave up work at 71. He was a British Rail ticket collector and he loved his job. At first we thought he was depressed. He began writing lists of the illnesses he thought he had; he wrote apology letters to the council. More worryingly, he stopped eating, paranoid that someone was trying to poison him.

A year on, he looked emaciated. Then he took an overdose of sleeping pills and was admitted to the Royal Free Hospital in North London. The ward was cramped and noisy, filled with elderly people suffering from various mental health complaints, but he seemed relieved to be there.

His behaviour became more erratic – he poured a boiling cup of tea over himself and took to rolling around on the floor. He was appointed a one-to-one carer who was supposed to watch over him.

He stayed at the Royal Free for almost a year, not fully diagnosed until an incident in which he behaved inappropriately towards another patient. Soon afterwards, we were told he had fronto-temporal dementia, which leads to aggression, sexual disinhibition, personality and behavioural changes and the usual "time-of-day" confusions.

It was harrowing to watch him change in these ways.

He was sectioned, and suddenly his life was not his own. One day, his psychiatrist told us he was being sent to a secure ward in a psychiatric hospital in Northampton, miles from his family and friends.

St Andrew's Hospital opened as a "lunatic asylum" in the 19th century and is now the country's largest mental health facility. For two years, he lived on a forensic ward.

The first time I went to see him, he was dressed in someone else's black-and-white striped jersey, so he looked like a comic-strip prisoner. He had lost more weight and looked bewildered.

A few months after he moved to Northampton, he began to resemble the kind of patient you imagine living in a secure unit. He walked with his eyes half closed, tripped over own his feet or sat slumped, slurring his words and drooling. Who can say how much of this was related to the actual dementia? To me, he looked doped up.

I have never seen him more depressed than during this period in St Andrew's, especially in his more clear-headed moments, when he would say he wanted to die.

Two years later, his team from London moved him to a nursing home in Croydon. I breathed a sigh of relief. The frothing at the mouth and zombie-like torpor stopped; he was still difficult to manage, but he seemed much happier.

We ignored the fact that he often smelt of urine. Much later, we discovered that some staff members in Croydon had been stealing from his account and using his mobile phone to make personal calls, for which we received an apology.

Since becoming ill, he has moved five times, and increasingly it seemed like he was a piece of lost luggage on a dementia carousel.

We tried to get used to seeing him in other patient's clothes – oversized sweatshirts, odd socks, tatty slippers – but it always made me flinch. It left me with the uneasy sense that those who manage elderly patients regard their clothes, shoes – and ultimately their identities – as somehow interchangeable.

After Croydon, he was moved to a stark hospital set-up in Hampstead. Here, I would find him sitting in his room, alone, staring at the walls. Carers often raised their voices to talk to him even though there was nothing wrong with his hearing, or they'd coo at him, the way you would at a baby. In this home, he wasn't allowed his own duvet, or anything that might remind him that he had once lived in an ordinary family home, because "regulations" didn't allow it. Then there were the smaller indignities. When he ate, a large plastic bib was wrapped around him. He became quieter, sadder and less mobile. Of course, the decline was due in part to his illness but I believe the isolation, and neglect, however unintentional, accelerated his decline.

This is not a sweeping indictment of the care profession. My father's psychiatrist has been supportive. I have seen carers work devotedly, but what alarms me is the lack of specialist training.

My father's story is not a worst-case scenario. Dementia can strip people not only of their mental capacities, but for those who need professional care, it can cost them their life savings. My father had nothing to lose – he worked all his life but never earned very much. I was stunned to learn the cost of his care is between £800 to £1,000 per week.

Had he been well-off, he would have been paying dearly for his (less than perfect) care. He might still have been living in a hospital-style ward were it not for a woman from the Office of the Public Guardian – the court that grants legal deputies. She encouraged me to look for a new home that had been rated highly by the supervising body, the Care Quality Commission (CQC). As it turned out, the ward where he was staying was due to close, so he would have had to be re-housed again.

It was then that I discovered Ash Court Care Centre, in Kentish Town, north London. I was astonished when I walked in to its airy conservatory and saw fresh coffee, a vase of flowers. It felt clean, homely and warm. This is where he has lived for the past year. Despite its excellence, it has made headlines over an incident of patient abuse, which just goes to show that bad nurses can sometimes be found in good homes.

It is a remarkable place – Bobby and Christine, his key nurses, do their job as if it were their life's passion. Nancy Rasool, the manager, is a perfectionist, visiting each resident most mornings, talking to them with genuine respect. Possessions don't go missing. Clothes don't get mixed up. Carers don't talk to 80-year-olds as if they were eight.

I now see more clearly the failings of the other places he has lived. At Ash Court, my father has regained his dignity. He is unable to do much without assistance these days, yet I couldn't say his life is not worth living – only he can say. It is rare to hear him wishing for his own death now.

Sometimes, he cracks jokes with Bobby and Christine. After a good meal, he glows with contentment. He tells me he's happy, and asks if I am too. An appetite for life, it seems, is still there.