Living with PCA

As I have been trying to live a normal life as someone with PCA problems - problems that cause problems with eyesight conditions - I'd be pleased to hear from anyone who has been recently diagnosed with this form of Alzheimer's Disease and would be willing to exchange ideas and articulate thoughts/fears/whatever with them. Apart from difficulty with simple living situations it would be helpful perhaps to exchange ideas fairly frequently to try and bring in a group of people rather than doing it as a solo exercise.

From BBC News 28.02.09

Dementia patients seek more aid

By Maryam Moshiri
Business reporter, BBC News

A task such as making a cup of tea is simple enough for most of us, but it's the kind of everyday act that's becoming more and more difficult for 70-year-old Graham Doggett.

Graham suffers from posterial cortical atrophy, the rare form of Alzheimer's disease highlighted by writer Terry Pratchett, who has the same condition.

Graham, who used to work as a chemistry lecturer at York University, is cared for by his wife Susan. The couple do receive some financial help, but Graham says it wasn't easy to get and isn't enough.

"The little bit we do get is very welcome but we had to fight great battles to get, not care, but finance," says Graham.

And that's what worries the Alzheimer's Society the most. The dementia charity says the current system of paying for care for people with dementia is a "confusing mess".

It warns that many people are unaware of the benefits they are entitled to and the system of means-testing for social care leads to thousands of people struggling to access the care they need.

Benefits available

There are three main types of benefits you can claim if you suffer from dementia:

• Attendance allowance: You have to be over the age of 65, it's not means-tested and you could get up to £67.
• Disability living allowance: You qualify if you are under the age of 65 - it too is not means tested and you could get up to £67.
  
• Money for carers: For this, you have to be caring for someone with dementia for more than 35 hours a week and you could receive up to just over £50.

According to the current rules, social care means help with tasks such as washing, cooking or using the toilet and is not paid for by the government unless you qualify.

It's not the same as health care, which could involved administering medicine and is paid for by the NHS.

The Alzheimer's Society calls this an artificial divide and carers such as Susan Doggett believe this is unfair.

"My mother had cancer and was in the hospice for the last six weeks of her life," she says.

"When I think about how wonderfully she was cared for, that is what everybody would want for their end of life care."

The chief executive of the Alzheimer's Society, Neil Hunt, believes the government's attitude to dementia care needs to change.

"We need a system that is more transparent, much easier for people to navigate, so they don't end up getting bounced between health and social services or the benefits system," he says.

Government response

Earlier this month, the government announced its National Dementia Strategy, which promises to transform the way dementia is dealt with by the health system.

The Minister for Care Services, Phil Hope, says the government is looking into the problem.

"A person who's got dementia may get both health care and they may still have to pay for social care, because they might have both health needs and social care needs," he says.

"While that's the case at the moment, we are looking at all of this and will be publishing a Social Care Green Paper in the spring of this year."

The direct cost of dementia to the NHS currently stands at more than £3bn a year and the number of sufferers is set to double to 1.4 million over the next 30 years.

Campaigners fear the economic downturn will mean the government will have less money and resources to dedicate to a growing problem.

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/business/7915389.stm

From telegraph.co.uk December 2008

"People started avoiding us" – a retired scientist talks about the isolation that Alzheimer's Disease can bring.

As the Government plans an ambitious new five year plan to help Alzheimer's sufferers, one couple tell their story.

By Victoria Lambert
Last Updated: 11:02AM GMT 22 Dec 2008

Graham is a retired scientist and university lecturer in quantum chemistry and mathematics at York, author of four textbooks and more than 30 scientific papers, but he can no longer read books, or decipher telephone numbers. "And glass doors are a nightmare," says Susan to her husband, "you can't cope with those at all, can you?" "Oh no," he says cheerfully. "I don't know where to walk. And goodness knows what people think when they see me trying to post a letter – completely unable to find the slot."

From the couple's banter, you would never imagine that Graham's sight problems actually stem from a type of early-onset Alzheimer's disease known as PCA (Posterior Corticol Atrophy) or Benson's Disease – the same condition that has affected author Terry Pratchett. Today the Government has announced that every GP is to be trained to diagnose dementia under an ambitious five year plan to give patients and their families support and up to date care.

As the Doggetts have learnt, one of the worst side-effects of dementia is the isolation it brings for sufferers but their families. A recent report from the Alzheimer's Society revealed that 50 per cent of Britons think there is a stigma surrounding dementia, compared to only 25 per cent thinking one is associated with cancer.

Susan talks of people avoiding them, not knowing what to say – and looking around a room to see that, once again, Graham has been left standing alone. She hates the word 'dementia' and won't use it. "It has awful connotations and it is simply not true of Graham. People prejudge him, which is terribly unfair."

For Graham is far from a typical image of the Alzheimer's sufferer. His mind remains sharp, and his memory remarkably good; the problem is his vision. In PCA, deterioration occurs around the back of the brain, affecting the neurotransmitters that pass messages to the eyes first, so that ordinary objects are not recognised. In 2001, Graham realised something was wrong when he could not make sense of complicated mathematical symbols in a paper he was co-editing. But optical specialists could not find a reason, suggesting it could be due to anything from a haemorrhage behind the retina to cancer.

It was only in 2004 after the couple had moved from York to Berkhamsted to be closer to their grown-up children Claire and Alastair, that Graham was referred to the Royal Free hospital in London where, a year later and after extensive tests, a neurologist diagnosed Alzheimer's. Graham is now taking Aricept, via a medical trial, and it seems to be stabilising his illness. Meanwhile, the couple remain positive. "We try to do something enjoyable every day," says Susan, "and not to worry too much about things that don't matter like housework."

They have no idea how the disease will progress, or over what kind of time scale. Graham now needs help dressing – he finds sleeves, buttons and pockets confusing – but he can, and does, much of the cooking. Susan has been careful not to infantilise him. "It's ironic," she admits, "but I was almost pleased when something was diagnosed; it was much worse when he was not functioning properly, but I didn't know what to blame. I thought: was it the stress of retiring? was it depression? I often lost my temper and felt guilty. Now I understand."

There are still problems, but Susan is keen to stress that people should treat those with dementia normally.

"People do seem to avoid chatting to us, they don't tend to engage us in conversation; perhaps they are worried we can only talk about Alzheimer's or that as we don't go to the theatre or the cinema or on lots of holidays we wont have anything interesting to say. I notice that men, particularly, are more likely to avoid Graham – they might have a word with him but then a good chat with someone else. Women tend to be more empathetic. But there's no doubt our social life has become very restricted.

"Restaurants can be difficult too so now we avoid them. Graham does knock his food about or a wine glass will go flying, and I feel people are watching us."

Neil Hunt, Chief Executive, Alzheimer's Society understands the Doggetts' concerns. "Stigma stems from fear, misconception and a lack of awareness of dementia among professionals and the public," he explains. "Dementia is not a normal part of ageing; it is caused by physical diseases of the brain and robs people of their lives.

"Only a third of doctors feel they have enough information to diagnose and manage dementia. People with dementia have told us that they lose friends after a diagnosis; that people start talking to their partners instead of them and neighbours have crossed the street as they approach."

Sufferers have told the Alzheimer's Society of their frustration. One, Tricia Davies, a grandmother from Gwent, says: "The name and the illness don't go together – I am not demented – I still sense things, I feel things. We're not lepers, not people to be ignored, we still want to be talked to." Heather Roberts, 53, from Derby adds: "I have to be careful who I tell; some people have dropped me like a stone."

Perhaps one of the most painful incidents occurred when Graham and Susan returned to York for the first time to see friends since moving South. He had been keeping touch with his former colleagues but his illness had affected his ability to type. So he had been, unwittingly, sending emails full of random letters rather than recognisable words. His friends, who had been receiving these, expected the worst. "It took them quite a while before they could talk to Graham normally," says Susan. "They thought he had lost his mind – not just his ability to use a computer."

For more information: The Alzheimer's Society; tel: 020 7423 3500; www.alzheimers.org.uk/outoftheshadows

http://www.telegraph.co.uk/health/3900288/People-started-avoiding-us---a-retired-scientist-talks-about-the-isolation-that-Alzheimers-Disease-can-bring..html

A Few Hours in the Life of Graham

I am woken by the central heating pump, which is convenient since I cannot now read a clock face. After three attempts I get my dressing gown on the right way round and with one arm in each hole. Slippers, likewise, though not necessarily on the correct feet. Go downstairs taking care not to look down but to feel instinctively where my feet are and inwardly count the steps as I go down. Take extra care to make sure I really am on the hall floor before progressing to the kitchen.

Breakfast has been prepared the previous evening so “all” I need to do is fill the kettle – much splashing of water as the lid is probably not opened! Put bag in teapot and make tea. Spreading the toast is a problem – butter thick on the right, my “good” side and non-existent on the left side; marmalade similarly positioned – work surface nicely smeared! Pour tea – sometimes half a cup and sometimes overflowing. Climb back upstairs – surprisingly without any spills. Feel for “bumper” on radio to turn it on and wake Sue, who has just had her best sleep of the night when she has room to spread out and can reclaim some covers. We plan our day as we eat breakfast and listen to the radio together. I cannot watch TV now and Radio 4 news is my sole source of information since I cannot read newspapers, magazines or books.

Dressing is the next hurdle (do you know how many ways there are to put on a shirt?). Shaving is also fun: all done by feel with some visual input from my valet/P.A./wife. Hair brushing and general grooming have similar problems.

We prepare to go to the shops; one brown shoe and one black shoe are quite often chosen from the cupboard, when we are interrupted by the postman arriving with the post. I cannot read any of the correspondence but usually ask if there are any brown envelopes from the dreaded tax man who, despite giving me a blind person’s allowance, expects me to fill in a complicated tax form. He then sends me a rebate one day followed by four demands, at weekly intervals, for the return of fifteen pounds which he says he has overpaid me. The next letter contradicts this statement and says that I owe nothing but is quickly followed by another letter with the original demand and a threat to fine me £100 if I do not pay!

Walking to the shops along Berkhamsted High Street is a hazardous occupation: if the café chairs don’t get you the bollards, billboards, buggies or boy skateboarders will! Shopping is another great experience; have you bought dog biscuits thinking they were cereal or asked a startled lady if we need any milk? Filling other people’s baskets can be fun too until we get to the till and Sue wonders where I have put the cheese. As we move along the street people often say “Hello” but I have no idea who they are unless they tell me their name, then I can talk to them. Faces are unrecognisable and body language is impossible to read. Sue tries to wear something bright and noticeable so that I can recognise her in a crowd. That works until someone else is wearing a similar outfit. So far I have not had my face slapped.

Arriving home with the shopping I cannot see to put it away and things end up in strange places. Stir fry made with whiskey marmalade instead of tomato-based sauce was an interesting experience when I attempted to cook a simple meal.

All these problems stem from the loss of binocular vision and cognitive perception as a result of a very rare form of Alzheimer’s disease, called posterior cortical atrophy. Interestingly, since the author Terry Pratchett was diagnosed with the same variant, it has been written about more frequently in the media. Terry asked to meet another author with the same problems to see if he could learn any strategies for dealing with the situation. Thus we found ourselves having lunch in London with Terry and his P.A. and being filmed for possible inclusion in a BBC2 film about Terry’s year, which is hopefully being shown in January or February 2009. An interesting experience, but Sue couldn’t help wondering why Graham wrote academic books on Maths and Quantum Chemistry rather than Fantasy fiction.

I value going to church for services but I find it hard to participate as I cannot scan the words of hymns or prayers. I appreciate people engaging me in conversation; being verbally stimulated is very important in order to keep the brain as active as possible. People are very helpful in offering us lifts as we no longer have a car. I am able to enjoy the chance to participate in house group activities within my limited capabilities. Music has become a very important source of pleasure and I find audio books useful though somewhat limited in scope.

My family are a great source of joy. The three and a half year old twin grand-daughters keep me on my toes and treat me as if I am at their level which in many ways is probably true. Gemma spent a long time at the bookshelves recently and eventually came with a book saying “It’s alright Granpy I’ve chosen a book with just pictures so I can read it to you”. Aimee observed me picking something off the floor and said “Your eyes are getting better today aren’t they Granpy?” If only this were so. There are still many things to be enjoyed. Walking with kind people to help me, talking with friends, listening to birdsong and, most of all, thinking.

Since our lives are now severely socially restricted, we appreciate even more the fact that we are members of the caring congregation at All Saint’s Church. A smile, a kind word, an acknowledgement that we still exist and that inside we still feel the active, busy people we were before the diagnosis, are worth a lot to us.

About PCA Chat

This is a blog about PCA, which stands for Posterior Cortical Atrophy. PCA is a rare variant of Alzheimer's Disease which affects the visual functions of the brain. I was formally diagnosed as having PCA in my early 60s and have now been living with the condition for the best part of 10 years to date.

I wanted to create this blog to share strategies that may be useful for me and others similarly afflicted for coping with the bizarre effects of PCA - for example ways to cope with using telephones, computers, diaries, as well as reading and answering printed letters/mail, shopping, public transport, dressing oneself etc and generally getting through life in a world that is not usually accomodating for someone who has visual problems but is not blind in the conventional way.

I am a UK resident and have support from my local National Health Service Primary Care Trust, my local Alzheimer's Society group, aswell as a PCA support group at the National Hospital for Neurology & Neurosurgery at the University College London Hospitals and I hope that this blog will be useful for anyone looking for support and advice from anyone who knows about this condition.