This incredibly moving Dispatches documentary featured Fiona Phillips who, as well as talking candidly about her struggles with her father’s illness and her late mother, investigated the struggle faced by Alzheimer’s sufferers and their families to get adequate care and support.
The number of people suffering from dementia – the majority with Alzheimer’s – is expected to rise from 700,000 to over 1 million by 2025 and 1.7 million by 2051. One of those suffers is Neville, Fiona’s dad…
Fiona moved Neville to Portsmouth from his home in Wales six weeks before the programme was recorded. This was so that he could be nearer to Fiona which made it easier for her to care for him.
During the recording of the programme, Fiona was still working at GMTV and looked after her dad at weekends while her Uncle Barry cared for him during the week. At the time – and I’m sure more so now – Neville needed a great deal of care.
He was clearly very confused and would do things like turning his fridge off which meant that his food would go off. He once had food poisoning from doing this when he ate some fish that had gone off. We saw Neville and Fiona making a cup of tea but he put coffee, tea and fruit juice in the same cup. It was in fact quite funny as the two fell about the kitchen over it, but of course, the reality of Alzheimer’s doesn’t often allow for humour.
As well as Barry and Fiona caring for Neville, he also had a nurse calling in on him, meals-on-wheels and a care worker who called in to check that he eats. Fiona and Barry discussed how Neville’s personal hygiene was starting to slip and that he really needed to be supervised full time. But, Fiona is desperate to keep her dad out of a care home; her mum Amy also had early onset Alzheimer’s in her fifties and died in a care home, an experience that was traumatic for Fiona and one that she doesn’t want to repeat.
We also met Barry and Yvonne who’ve been married for forty years. Yvonne has Alzheimer’s and like Fiona, Barry was trying desperately to cope with her himself in order to keep Yvonne from going into a care home. He’d built an office in their garden so that he could care for her full time while continuing to work.
One of the biggest problems that Barry faced is that it took so long for Yvonne to be officially diagnosed, the drugs that could possibly have arrested the development of the disease weren’t prescribed for her. Drugs such as Aricept and Exelon have been proven – in some cases – to delay the worst ravages of the disease but NICE guidelines have ruled that they should only be offered to patients who are in the advanced stages of the illness, which is ludicrously stable-doorish.
As one of the ladies at an Alzheimer’s support group pointed out to Fiona, it’s rather like telling a cancer sufferer “Go away and come back when you can’t breathe. Then we’ll help you.”
It is truly shocking that because of the nature of the disease – which affects sufferers primarily mentally but has a knock-on physical element – it’s not given the same gravitas by the medical world as illnesses such as MS or Parkinson’s, even though these diseases have the effect of debilitating the sufferer and causing them to need full-time care, just as Alzheimer’s sufferers do.
NICE state that their decision to limit who can get these drugs is based on the clinical effectiveness of them versus the cost, and in their opinion, there hasn’t been sufficient proof of the efficacy of the drug for everyone who needs it. Aricept costs on average £2.50 per day to prescribe – which is cheaper than some indigestion drugs that are routinely prescribed – and when you see how effective it is for many sufferers, withholding it seems particularly cruel.
Back with Fiona and Neville, one of the most moving parts of the programme was when Fiona pointed to a photograph of herself and her father didn’t know who it was. He did however still recognise his late wife and became upset when he talked about her. Fiona was tearful too when talking about her mum who suffered terribly towards the end of her life, and now, it seems that Neville is destined to deteriorate as quickly and as badly as Amy did.
While recording the documentary, Fiona had been called in the middle of the night by police in Portsmouth who’d found Neville wandering the town centre at about 1am, freezing cold and disorientated. Fortunately, the police found him before he came to any real harm but of course, Fiona’s unease about her father’s condition was increasing all the time.
We were also introduced to another Alzheimer’s sufferer, Peggy McNab who’s cared for by her 83 year old husband Alex. Peggy can’t talk, can’t feed or toilet herself and has to sleep on a bed that’s in their kitchen. Poor Alex, who’s of course elderly himself, struggles to cope and he and his daughter were having to give serious thought to what comes next for Peggy.
Alzheimer’s is a disease that robs the sufferer of their personality and it turns once loved and familiar family members into total strangers who are unpredictable, possibly violent and always demanding of a huge amount of care, most of which is delivered by family members saving the NHS around £6 billion a year. And of course as we now know, Fiona recently joined the ranks of the millions of other full-time carers in this country who’ve left their jobs in order to look after an affected relative.
I’ve had first hand experience of witnessing the devastating effect of Alzheimer’s when my grandfather began to show symptoms of it in the last years of his life. A once proud and private man – you never saw him without a shirt and tie on – became a man who would swear and behave inappropriately and sometimes violently. He wasn’t safe to be left alone as he would turn the gas on, or wander in his underwear at night and so on.
Towards the end, he didn’t recognise my mother who’d gone to Manchester to help care for him, and would become aggressive towards her when she tried to help him. This was a source of terrible distress to her long after he died.
Then I worked in a nursing home where there were several people in various stages of the disease. One of the things that used to distress me most wasn’t so much when the patients were totally immersed in the disease – because then, the person they had been was long gone – it was in fact when they in the early stages and were sometimes aware of what was happening to them.
One lady in particular sticks out in my mind; she was in the early stages and could be perfectly lucid one minute, then totally confused the next. One of her most troubling symptoms was that she’d sometimes believe the rug in her room was in fact a shark infested pool. She had to be helped to walk and she’d become hysterical and incontinent if she was taken across the rug. My instinct was to simply accommodate her fear and not make her walk on the rug, which meant a detour around the perimeter of her room but made her far less afraid.
At the time, guidelines from the NHS stated that it was in the patient’s best interests to reinforce what was reality and not permit accommodation of what was their ‘imagination’ however, I felt that it was cruel to do so when ‘reality’ caused so much distress. Alzheimer’s is not curable so why put sufferers through needless reality checks when their reality is the only one they know?
The fact is, still very little is known about the illness and given that it primarily affects groups of people who are traditionally not very high on the NHS priority list – the elderly – it’s on the back burner and isn’t being given the resources it should have, which carers all over the country are living with the results of daily.
This was so moving and so distressing to watch but I applaud Fiona for allowing the cameras to follow her and Neville as she strives to do what’s best for him while juggling her own life and the demands of her young sons and her career. What Fiona didn’t talk about in the film – but which I’m sure must keep her awake at night – is the fear that she and her children may have inherited the propensity to get this devastating illness too.
Fiona and all the other participants in the documentary have a terrible battle on their hands and one which cannot have a happy outcome. Here’s a message from Fiona about the programme…
“A few weeks ago, my dad was found by police wandering around Portsmouth in the middle of the night, in the freezing cold, unable to remember his home address.
Because my dad has Alzheimer’s. It’s an incurable and degenerative brain disease that afflicts more than 400,000 people in this country – and it is terminal.
I should know.
Two years ago, my mum died of Alzheimer’s, after a long and painful battle. She was one of the 15,000 people in Britain who develop symptoms before the age of 65. I will always remember, in those final days, keeping vigil at her bedside, watching as she thrashed and screamed, unaware of where she was or what was happening.
So my father’s diagnosis with the same condition, only months later, came as a shock. I should have recognised the signs earlier, but when my dad started behaving oddly, I tried to explain it away as his way of grieving for my mum. I simply couldn’t believe it was happening again.
When I finally realised how ill he had become, I moved him from his house in Wales to a semi-independent flat for the elderly in Portsmouth. My uncle Barry now looks in on him three times a week, and I visit him on the weekends. But his condition is deteriorating and he finds everyday tasks difficult. Even making a cup of tea can be a struggle.
I feel terribly guilty. Moving him nearer to me in London would disorientate him further and I know he doesn’t want to go into a care home. So I’m torn.
There are thousands of carers in this country who face a similar dilemma – they are perhaps the hidden victims of Alzheimer’s.
Two-thirds of those with the disease are looked after in their own homes and, with one in five people over 80 having Alzheimer’s or some form of dementia, most carers tend to be partners or spouses and many are elderly and frail themselves.
These unpaid carers are thought to save the economy around £6 billion every year. They include people like Alex McNab, who I met in the process of making this Dispatches.
Alex is an 83-year-old pensioner who now spends the entirety of his retired life caring for his wife, Peggy, who is in the advanced stages of Alzheimer’s. Peggy can no longer walk or climb the stairs, and has to sleep in a bed in the kitchen. Alex and Peggy’s daughter, Julie, worries about her father’s health almost as much as she does about her mother’s.
“There is going to come a point when dad will not be able to cope; to do this on a 24-hour, 7-day-a-week basis,” she says. “Dad’s 83 now and will be 84 in March, he’s got high blood pressure and so you have to think about his health needs as well.”
As the population ages, and the Alzheimer’s epidemic spreads, families across Britain are being overwhelmed. Dispatches asked YouGov to carry out a survey of more than 750 carers – eighty per cent of them said they were dependant on families for help. Less than half – 49% – said they get help from social services.
Funding is a real problem. Nearly two thirds of councils have now decided to fully fund care only when elderly people are at substantial risk. This means that around 150,000 sufferers in this country have to entirely fund their own care.
The lack of access to medication doesn’t help either. The Department of Health’s advisory body, NICE, has decided that people in the early stages of the disease shouldn’t receive Alzheimer’s drugs like Aricept on the grounds that they are not cost-effective. It’s a decision described to me by leading old-age psychiatrist Dr David Wilkinson as “pretty scandalous”. I can’t help but agree with him.
At last, however, the Government has at least acknowledged the scale of this problem. They have drawn up a National Dementia Strategy to improve diagnosis, co-ordinate treatment and care, and raise public awareness. But the launch of the strategy has been postponed twice. It was supposed to be finally announced later this week – but so far there has been no confirmation.
They continue to say that this disease is now a priority for the government, for the NHS and for social care. Let’s hope it is. It may be too late for my mother, but there is still time for my dad and thousands of other sufferers like him – if, that is, the government keeps it promise.”
You can find out more about Alzheimer’s as well as where to get support if you’re a carer here.