Dementia Awareness Week - 3 July 2011 to 10 July 2011
Cumbrian experts aiming to raise awareness of dementia
News and Star, 9 July 2011
We are told that, as a society, we're living longer than ever before. That 60 is the new 40 and it wouldn't be unrealistic to start planning for life in our 80s, 90s and even surpassing the century mark.
But with those added years comes the increasing risk of developing dementia – an illness many of us fear more than heart disease or cancer. Those can potentially be cured, but the thought of sitting there helplessly while our minds start to wander is hard to contemplate.
However, to coincide with Dementia Awareness Week from 3 to 10 July 2011, experts from across the county tried to raise awareness of the often-misunderstood condition and show that, with the right support, patients can go on to live fulfilling lives.
They are not trying to pull the wool over our eyes. Dementia is a cruel illness. Actor Jim Broadbent's portrayal of a dementia patient in recent BBC1 drama Exile gave an honest account. It told how a sharp, intelligent man had become lost in his own memories, unable to recognise his own family.
However it also gave a glimmer of hope. It showed that, by pushing the right buttons, you can still find the person behind the illness. And that is exactly what they are encouraging here in Cumbria.
A joint venture between the Cumbria Partnership community and mental health trust, the Alzheimer's Society and Tullie House Museum in Carlisle is all about reminiscence – using old-fashioned memory boxes to trigger interest and conversation.
Tullie House volunteer Kath Barling is among the team that takes them out to care homes, community centres and social groups. The boxes are filled with wartime clothes, old-fashioned toys and household items from the 1940s.
"They are things they might have had in their homes, things they will have used or remember from their childhood. Often you only have to show them one item to set them off. It's amazing to see people talking who weren't very communicative before. It's all about stimulating memories and conversation,” she explains.
David Storm, from the Cumbria Partnership, is responsible for the care of older adults with mental health conditions in the Carlisle area. He is a strong believer in reminiscence as a way of helping fend off dementia.
"People with dementia can often still live fulfilling lives. You manage other illnesses, like diabetes or asthma, but you can also manage dementia.
"Although the short-term memory might be really bad, quite often the long-term memory is still really good. In a lot of cases it's communication that's the problem. By encouraging people to reminisce you can stimulate happy memories they can talk about. It's about seeing the person, not the illness,” he explains.
On Thursday 7 July 2011 as part of the reminiscence project, various organisations took the campaign into Carlisle city centre aboard a Summer Holiday-inspired vintage double decker bus.
Dressed in 1950s clothes, staff from the Carleton Clinic's Ruskin Unit – which cares for dementia patients with the most serious needs – chatted to passers-by in a bid to raise awareness of the illness in the wider community.
Mr Storm says that early diagnosis is key to be able to keep dementia – an umbrella term for a range of conditions, including Alzheimer's disease – at bay for as long as possible. Yet there is still a lack of understanding that is stopping people coming forward. "At the moment in Cumbria we only see about half of the people living with dementia in our community,” he says.
"That might sound bad but that's actually about ninth best in the UK – however there are still 50 per cent that aren't getting any support. I don't know if it's stigma, fear or something else but a lot of people just won't go to their GP for diagnosis.”
He stresses that although there is no cure, it doesn't have to be the end. Progress can be slowed through a combination of talking therapies, such as memory clinics, and medications. These are a far cry from the old anti-psychotic drugs, now rarely used, that left patients heavily sedated. These days they can actually help improve the memory and fend off dementia for longer.
He says because of the new approach, and improved support in the community, patients are staying at home a lot longer than they used to, with care homes seen almost as a last resort.
And if people do need residential care, staff are being better trained to understand dementia and focus on the person, their past and what they enjoy doing – with much more family involvement.
However it is not just the elderly who should be aware of the signs. Dementia is more likely to occur in older people, but it doesn't always.
"Quite often people with dementia will have been experiencing it for 12 months before recognising it. The things to be aware of are short-term memory. Everyone forgets things, but if it is happening more often and you have more difficulty recognising familiar things that can be a sign. People do get more repetitive as well,” adds Mr Storm.
Once someone is diagnosed, it is not just the individual that gets help. As well as raising awareness about early diagnosis, Thursday's roadshow on 7 July 2011 also aimed to let carers know what help is available. Jeannie Mark, ward manager at the Ruskin Unit, says: "We had a similar event last year, but it was just a stand in town. One woman came up to talk to the girls and was at her wits' end caring for her husband. A couple of days later the gentleman was admitted. That's why raising the profile is so important. She didn't know where to go for help.”
The Ruskin Unit provides short-term support during a crisis, during which they can decide what is the best option for a patient. Sometimes this is residential care, but quite often they can go home – with the right package of support.
Sarah Mason, from the Alzheimer's Society, is the dementia support manager for Carlisle, focusing on the needs of carers and family members.
"We have a range of support activities. Some people want to get in touch with others and share experiences and advice but we also do one-to-one support, helping carers to offload, discuss concerns and sometimes talk about anything but dementia. It can be a very isolating condition, both for the person and the carer.
"There's a whole range of emotions that come into play when you are looking after someone with dementia. Often it is just knowing you are not alone.”
She stresses that there are no hard and fast rules about whether someone should be at home or in residential care. "It's very much an individual journey. You have to do what feels right for you and should never be railroaded into anything.
"Nobody knows the person better than the carer, they need to know all the options and make informed choices. Our role is to help with that.”
Ms Mason adds that people generally just need to know they are doing the best job possible, which is why it is important they are able to access the support and advice they need. "This is a huge issue but I've been with the society for four years and have seen a huge increase in both public awareness and the response from government and other agencies. We are getting a much better support network.
"It's a long road but we are definitely making progress.”
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Daughter calls for better understanding of dementia
News and Star, 9 July 2011
A DAUGHTER who lost her mother to Alzheimer's disease has hit out after a survey revealed dementia is the most joked-about condition in the north of England.
A YouGov survey – released to mark Dementia Awareness Week – found that more than half of people in the north believe dementia is not taken seriously enough in society.
Of those surveyed, over a quarter of people said they hear jokes about dementia the most compared to other conditions, while 22 per cent think it is acceptable to call someone with dementia senile.
Local campaigners are now calling for a change in attitudes towards the illness, which affects 7,283 people in Cumbria.
Lynne Chambers from Dalton, cared for her mother, Margaret Butler, who had Alzheimer's disease, for 10 years until she died, aged 90, in April.
She said: "Fortunately, my mother was unaware of the impact her illness had on others and the lack of understanding shown by many people.
"It used to make me so angry to see the reaction that my mother's repetitiveness, for example, created in others ranging from embarrassment, irritation and humour. I found it easier to handle embarrassment and irritation, than when people found dementia funny. I think people react this way because they are frightened. It is essential that awareness of dementia is raised so there is better understanding of how it affects people. Only then can we hope to see stigma reduced and dementia no longer being a joke.”
Margaret Irving, the area manager for Alzheimer's Society in the South Lakes, said: "It is shocking that people think it's acceptable to make jokes about people with a serious medical condition like dementia.
"This can be devastating for those affected and can have a huge impact on their confidence, possibly causing them to withdraw from society.
"It's essential that stigma against dementia is reduced to enable people to continue to lead as full a life as possible after their diagnosis.'
‘This Dementia Awareness Week, Alzheimer's Society is encouraging people to ‘remember the person' by looking beyond someone's diagnosis of dementia and engaging with them.
"With the right help and support people with dementia can have a good quality of life and friends and family have a huge role to play in this.”
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Fond memories of mum in her days before dementia
News and Star, 07 July 2011
"This is Dementia Week”, according to an email I received from the Cumbrian NHS.
It is a time to focus on and raise awareness of this brain declining illness and remind people that the earlier help is sought the easier the condition can be managed.
The medical definition says that dementia is a group of conditions associated with an ongoing decline of the brain and its abilities.
It can affect memory, thinking, the ability to communicate, use language, understanding and judgement. Alzheimer's is one of the most common and well known forms of dementia.
That's the medical line. But what it really means can't be explained unless you have been there.
I often mention my wonderful mother in this column; a woman who started her life thinking of others and ended it exactly the same way.
Our earliest memories of our mother were of a very competent nursing sister who made friends among patients and their families. It irritated both my sisters and I that, whenever we were out in public, we would be stopped by people who would want to speak to "Sister Anna” and tell her how grateful they were and how wonderful she was.
Mum would always be so gracious in her acknowledgement and would only let us know later that she hadn't a clue who the patient had been.
Mum was the organiser. Dad would hover in the background but it was mum who got everything done – and not only for us.
We lived in Zambia, where most people did not have extended family in the same country. It seemed to us kids that anyone on the Copperbelt who got married did so from our house, with us as flower girls and dad giving the bride away.
She was also the district agony aunt. Anyone with a problem came to mum and she would invariably sort it.
My youngest sister has had ongoing and horrific medical problems since she was five. Mum was always there by her side. She would accompany Fiona from Zambia to London for operations and live in cheap digs and eat fish and chips while Fiona, at King's College hospital, discarded smoked salmon and posh food.
Mum had arthritis from a young age, but even when she was in physical pain she was always the brains of the outfit.
When my father and I were arguing – usually over a political difference – she would exclaim in exasperation that she was glad she wasn't as clever as us! But she always was, and more so.
We didn't really notice the dementia coming on. Sure, she would forget things occasionally but we never thought anything of it.
In the end, though, mum was a prisoner of her own dysfunctioning mind and, sadly, she never quite attained the blissful state of ignorance where at least she no longer knew what she was missing.
Because of her deteriorating physical health, television and her music became very important.
In the end, though, she could no longer remember how to work the remote control on the television and was stuck with whichever programme the last carer had turned on for her or, if nobody had thought to turn on the TV, she would be left staring at a blank screen.
She gave me my passion for music but, in later years, she couldn't listen to music without someone else turning on her CD.
When she eventually ended up in residential care, I had to ask staff to remember to turn on her radio on a Sunday morning so that she could listen to Aled Jones, Michael Parkinson and Elaine Page.
My mum and I were very different in one respect. She never complained. She was grateful for every attention and put up with every inattention. I said at the time of her death that I hoped I could be like her – but I know I never will.
I am at a stage in life where I forget things, start a sentence and can't remember where it's going, and leave a room to fetch something and come back without it.
Even at this stage I hate it and I don't think I could cope with more than this.
Usually dementia occurs in people who are aged 65 or over, affecting around 60 in 100 people aged over 65 and 20 in 100 aged over 85 years old at some level. However, people under 65 can also develop dementia, although less common. In 2009 it was estimated that seven per cent of over-65s in Cumbria had dementia; around 7,000 people.
If anyone is experiencing any of these symptoms they should go and see their GP – chances are you are just getting older!
