Arifa Akbar reports Independent/UK 18 Aug. 2012
Fiona Phillips was one of the first women to speak out about dementia, long before the days of high-profile campaigns. She broke the silence that had cloaked the "elderly illness" after her mother Amy began suffering from Alzheimer's. She died in 2006 – only weeks before her husband, Neville, was diagnosed with the same disease.
Fiona gave up her 12-year tenure as a GMTV presenter to spend more time with her father, so when he died in February this year, one might have thought it would have offered her some kind of closure. Yet it is clear from speaking to her that Neville's death isn't the end of the story. She receives floods of letters from the public, telling their stories of loved ones languishing with the illness, and she is an active member of the Alzheimer's Society.
At first she talks in a fast steam of emotion, with the strain showing in her voice. "It's only since they have both gone that it has really kicked in. I realise how much it has damaged me. So much of my life was wiped out by it. While it's going on, you just get on with it. Now I feel angry and upset," she says.
The problems around dementia care are immense, she says, not least because the area is grossly under-staffed and under-funded. "It's almost fashionable to talk about dementia now, but still no one is doing anything. It's time to stop talking and for something to actually be done. Dementia should be reclassified as a medical issue "
Her mother's story is a harrowing one, and it still keeps her awake at night. Amy Phillips began to change as far back as the early 1990s, but nothing was diagnosed until 10 years later. At the time Fiona didn't know it, but her father Neville was most likely suffering from Alzheimer's as well as her mother. "Dad would phone up and say 'You'll never guess what she's done – she's set fire to the kitchen!' But I still didn't realise, because he wasn't telling us everything. With that comes a whole lot of guilt. I still lie in bed thinking 'Did I do enough?' I go over it in my head… If I had looked after her full time, I would have had to give up everything. How could I have done that to my two children?"
The burden of care fell heavily on Fiona. At the darkest times, she was doing 10-hour round trips to Wales every weekend from her home in London, which she shares with her husband, Martin, with her two young sons in tow, and a job in television to do every weekday. Before her mother was diagnosed with dementia, she had also suffered from breast cancer, and Phillips says the treatment she received was markedly different from the way in which her dementia was handled. "The system gave her the gold service when she had breast cancer. She couldn't have had better care – but when it's elderly mental illness, it's very different."
But what she is most upset about now is the circumstances around her father's death. His last months were spent in a psychiatric ward, where he was given a cocktail of antipsychotic drugs and sedatives that dramatically transformed him. He had, until then, been living in a flat overseen by a warden, but after he went missing one day he was admitted to a specialist dementia care home. He had only been there for a day when there was an incident in which he hit out – a common symptom in Alzheimer's sufferers – and the home moved him to a psychiatric ward.
"As soon as he got into the system, it was an absolute mess," Fiona says. "I kept him off any drugs for three years but as soon as he was in care, he was on an A4 sheet of them – really powerful anti psychotics and sedatives. "He changed completely. He had always been a big, strong man, but he deteriorated so much. If you picked up his hand, it dropped like a rock. His eyes were opaque and watering; he was stooped over, his breathing was laboured."
"You go into elderly mental health [units] and it's the least staffed. They aren't equipped to deal with dementia patients. They blast them with drugs or keep them in bed. And there is such a lack of understanding, even in mental health nursing. Carers still talk of patients 'misbehaving', even though it's not them but their illness – you should know that if you work in mental health."
She adds that, if she were to suffer from Alzheimer's, she would contemplate using an assisted dying service , as the novelist and Alzheimer's sufferer Terry Pratchett has spoken about publicly – especially given current standards of care. "On the one hand, I really think life is sacred and precious. But on the other hand, while there is no cure for Alzheimer's and no proper framework for care, I don't think I'd want to be lingering around, with the people I love having to worry about all my affairs. "It is like taking on a life, not just an illness. That's what hits you when someone you love has it."