An exploration of the UK carer world

We can't yet cure Alzheimer's, but we can change our attitude to victims     

Yvonne Roberts

The Observer, Sunday 15 December 2013                   The full text.  Numbers have been added as have the links "more here".


After a special G8 summit on the disease, Yvonne Roberts looks back on her family's long struggle to get help for her father, a dementia sufferer



1

War – of a kind – has been declared on dementia. My dad, who would have been 92 years old today, would have expressed approval, up to a point. At a special G8 summit in London last week, the prime minister, David Cameron, referred to dementia as "the key health challenge of this generation". ((more here))


2

Countries including the UK, France and Canada have agreed to greater international co-operation and shared expertise, investing more in research as part of a worldwide push similar to the concerted efforts that have seen some success in the fight against cancer and HIV/Aids.


3

  1. It's estimated that 36 million people worldwide – 28 million of whom are so far undiagnosed – have dementia ((more here)), 
  2. a term used to describe progressive brain cell death manifested in symptoms of 
  3.      cognitive decline such as 
  4.               forgetfulness, personality change and impaired communication and thinking.


4

In personal terms, that translates into the memory of a Sunday in early 2004, when my dad, John Trevor Ellis Roberts, then 83, was enjoying a family meal. He raised a glass, as he loved to do, and began to propose a favourite toast in Spanish, a language he had learned during the 1940s. "Amor, salud y pesetas …" For the first time in his life but not, as it would turn out, the last, he failed to remember the rest. "Love, health and money and the time to enjoy them …"


5

By Father's Day, in the third week of June of the following year, he had deteriorated so rapidly that in a note I rediscovered – taken to gather evidence for proper care within the NHS because we believed passionately that he was suffering from a disease of the brain, not "old age" – I wrote: "I wonder if this will be the last Father's Day Dad will remember. People say, 'He's 84, he's not doing too badly', as if misfortune for the old is inevitable and rationed out."


6

Last week, we learned that the numbers of those suffering from dementia are predicted to double every two decades. In the UK, 800,000 people are living with the condition, most commonly manifested, as happened with my father, as Alzheimer's disease and vascular dementia.


7

Last week, for the first time, the NHS made a brain scan available (at a cost of £810) for those who might like to know what potentially lies ahead – not me. A cure is "within our grasp", Cameron predicted bullishly. "This disease steals lives, wrecks families and breaks hearts."


8

All of which is welcome but tempered by the argument, made by Professor Martin Prince of King's College London, that the increase of £66m for UK research is less than 0.5% of the annual cost to society from dementia, which runs to billions – a cost that rises still higher if unpaid carers are included.


9

          9.1    So, the richness of last week's rhetoric from the government can't hide the continuing paucity of resources. 

  • 9.2 - Nor can it distract from the challenge that matters most immediately to millions of people – 
  • 9.2.1               the challenge to end the stigma, 
  • 9.2.2               provide holistic help, 
  • 9.2.3              support families properly and 
  • 9.2.4              radically change our collective attitude to the disease. 

  • 9.3.1    How we frame the problem of dementia profoundly influences what's on offer – and 
  • 9.3.2               what's currently on offer is still desperately inadequate.

10

  1. A diagnosis of dementia ought to be a passport to a life still lived well – 
  2. not a miserable wait for an end during which 
  3. the only "battle" that takes place,  ... is the fight to keep a loved one out of inappropriate residential homes of 
  4. sometimes near-shameful Dickensian standards and in the care of 
  5. the health service for which he had paid his taxes all his working life. 
  6. But there is hope.

11

In 1986, Dr David Snowdon, a distinguished US professor of neurology, visited the School Sisters of Notre Dame in Mankato, Minnesota, a retired community of 678 Catholic sisters, aged from 75 to 107. They had all followed a similar diet, hadn't smoked or drank, many had been teachers and all had agreed to participate in Snowdon's long-term study, including donating their brains for dissection after death. Some of the sisters were extraordinary. In 2001, Sister Esther Boor, then 106 and still vigorously employing an exercise bike and painting ceramic nativities, advised Snowdon: "Think no evil, do no evil, hear no evil – and you will never write a bestselling novel!"


12
What the study revealed is that more than 20% of the nuns had the plaques and lesions, the "cauliflower" brain, that indicates dementia but had never displayed the symptoms. The reason, Snowdon said, was that they had a more positive attitude than the general population, more sophisticated languages and a "density of ideas". My dad had always had a huge appetite for the density of ideas – speaking several languages, always learning – but it provided no shield. Instead, he experienced fear, anger, shame, indignity and frustration that were as much the result of an inadequate system as of the debilitation caused by the disease. And all the time, for him, to quote Longfellow: "The leaves of memory seemed to make/A mournful rustling in the dark."


13

My dad's medical notes show the decline not untypical of the disease. In June 2005, he is at times aggressive. He remembers he was in the navy but not his life as a Morse code operator. He wanders off from my stoic mother in the supermarket but somehow finds his own way home. In that month, he tells me an anecdote about a cow that swallows the string of a kite. He remembers it in full, and he is delighted. So am I: the illusion that he can get "better" is hard to let go, especially for my mum.


 

14

  1. In September, in a cognitive test, he fails to correctly repeat, "No ifs or buts …" 
  2. Later that year, he sleeps all day and is up all night, which means my mother is too. And so it goes on. 
  3. He is convinced my mother is not his wife. Or that she is his wife and, at 82, conducting affairs, so he is angry and she is heartbroken. 
  4. Eventually, my dad, now doubly incontinent, goes to a day centre for one day a week, which he hates. 
  5. Then he moves, for assessment, to a psychiatric hospital. He is convinced a female patient is his wife. 
  6. The ward is unpredictable and, at times, scary. 
  7. Throughout, there is little support for my mother. 
  8. My dad loses the power of speech.

15

  1. After several weeks, we are told that he is not eligible for continuing care funded by the NHS. 
  2. He must go to a residential home. 
  3. He is taking 11 different medications. He has a thyroid problem and high blood pressure; he is disorientated; he has Alzheimer's and vascular dementia. 
  4. Bizarrely, a doctor says a residential home would be better because in hospital my dad would be more prone to chest infections. 
  5. We, like too many families, are lost in a world of the surreal.

16

  1. Eventually, we win the fight for NHS care and my dad is shown huge kindness and patience by the staff in his locked psychiatric ward – 
  2. but, as they would be the first to concede, there is a lack of stimulation in such wards for much of the time. 
  3. Today, a diagnosis may take just weeks, not months, but 
  4. the geographical inequality that means some families have to sell their home to pay for care the NHS should provide continues. 
  5. Some areas have dementia advisers to guide families through the maze. The city of York is encouraging a dementia-friendly culture, promoted by John Kennedy, director of care at the Joseph Rowntree Foundation. 
  6. When my dad went missing after a trip to Asda, the awareness of others would have definitely helped.

17

  1. Now, too, some private residential homes – charging £1,000 a week and more – are pioneering more stimulating environments, 
  2. based on the ethos that a life well-lived matters for all but perhaps especially so for those who have little recall of yesterday. 
  3. But that standard of care should be a right for all victims of the disease, 
  4. not just a privilege for the few.

18

My father died, two months before his 90th birthday, two years ago. The dementia had left him a shell but it couldn't take away his reputation as "a lovely gentleman".


pagetop here    

for pasting- this page   We can't yet cure Alzheimer's - full text on this website here

                           We can't yet cure Alzheimer's - selected text here     

                           Home page - Dementia - theguardian  coverage here

                           

                           The full text on theguardian website is here