Wednesday 28 April 2010
Friday 6 March 2009
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, 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.
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.
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.
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.
Friday 9 January 2009
"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
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
Perhaps one of the most painful incidents occurred when Graham and Susan returned to
For more information: The Alzheimer's Society; tel: 020 7423 3500; www.alzheimers.org.uk/outoftheshadows
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.
Friday 16 May 2008
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.