Thursday, 30 October 2014

I hate supermarkets

I now realise why I keep away from Supermarkets so much these days.

We went to a large one near to home today, partly to give the Grand children some exercise, and partly to do a bit of shopping.

However once inside I realised, it was a big mistake as the noise was horrific.

The loud speakers were churning out loud music along with staff messages, and other people were shouting, either because they could not think clearly, or they were so used to loud music that shouting was normal.
People were rushing around with shopping trolleys and in some cases left their trollies in silly places, while they went off else where.

To put extra pressure on us we also had a lot of disabled electric scooters being driven by people who really did not care that other people were around.

 My walking stick was hit quite a few times, and I got to the stage where I did not want to be there as it was lethal, to anyone with disabilities.

I think a lot of people who really need these electric scooters need them for a very good reason, but these days other people seem to use them just so they do not have to walk, even if there is nothing at all wrong with them.
I have come to the conclusion that people gave completely lost all respect for others, and that is very sad.
I dread to think what it will be like when it comes to Christmas, as things will become totally manic.

Tuesday, 28 October 2014

Why this stigma

Stigma is a terrible thing, but it's not something which is new, it's been around for many years.

We have seen stigma in many illnesses,  like cancer in the 1950-60s.   It's also been attached to Aids,  and recently Ebola, yet much of it is caused by old stories and myths, which do not seem to go away, possibly because many people simply believe they are true.
I have been asked on many occasions whether dementia us contagious, something which has left me staggered. Some think you can catch it if someone who has dementia sneezes.

But I believe much of this stems from the fact that it sometimes seems to run in families, but most of it seems to come from the fact the some forms are called disease, like Lewy Body Dementia, which in some cases is called Lewy Body Disease, just one case in many.
Some charities sometimes call themselves " Alzheimer's Disease or Dementia Disease, and this also helps keep the stigma going. This is because professionals cannot decide what to call illnesses I suppose, or people call things by different terms and names

But I feel that much of this could be stopped, if everyone was educated properly about this illness, rather than picking up odd pieces and trying to find the truth their own way

To educate everyone we should be starting with school children, who are already learning about someone in their families who has the illness. Many of these children want to learn more about what is happening to granny or grand dad, and it's now time to start helping them understand  just what is going on.
These are the people who will shape the  future in stopping this stigma, and therefore we must help them to help us.
Years ago parents kept their children out of the way, when someone had dementia, but now things have changed for the best, and it would be much better without the stigma.
I have also heard stories of people crossing the road, so they did not come into contact with someone who had dementia in their families.
This usually happened in very close communities like small villages, as a family member once told me.

So it's time to find a way of getting into all schools, to teach all children that stigma, is not a nice thing, no matter which illness it's attached to. Teachers should allow people with illnesses into schools to help educate those who are our future support.

The Government says that they are dementia friendly, so it's time they factored this into education.

 It does not need to be an examination study, just allow us in during free time to speak to children and explain our problems and the stigma which is attached to it.

Let us hope that sometime soon things will change and change for the best

Let us all work to remove all stigma once and for all

Monday, 27 October 2014

Thousand tooo ashamed to speak out

Thousands of dementia patients are hiding symptoms from loved ones and doctors because they are ashamed, a report warns.
It compares the stigma to that of HIV and Aids in the 1980s and says as many as a quarter of those suffering are refusing to speak out.
Doctors say patients tell them how their friends ‘disappeared’ after they were diagnosed and in some cases how their own children have stopped visiting.
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A joint report led by the Medical Research Council warns that this ‘unacceptable stigma’ is denying patients vital help and resulting in them being ‘marginalised’ from the rest of society.
Around 850,000 patients in Britain are thought to have dementia but only half have been given a proper diagnosis. The Government is urging GPs to improve their detection rates over concerns that victims and their families are struggling in silence.
But part of the problem is that many patients are too afraid to be diagnosed so do not make an appointment in the first place.
‘A long time ago there was a stigma attached to cancer and more recently HIV. In both cases it stopped people from getting treatment and that’s sadly the case with dementia.’
The report is based on in-depth interviews of patients with dementia, their relatives, specialist doctors and academics.


Sylvia Kahn, 77, a retired solicitor, was diagnosed with dementia three years ago.
She said that since then people ‘don’t want to know’ and often ‘turn away’.
The grandmother, who lives with her husband Bob in Warrington, Cheshire, said: ‘Those of us with Alzheimer’s are often deeply hurt when people are afraid to talk to us.
‘Why should you stigmatise us? We didn’t ask for the dementia. It’s not a crime.’
Mrs Kahn decided to leave her job after being diagnosed with Alzheimer’s following a series of memory scans in 2011.
With her husband she now works for the Alzheimer’s Society giving talks and helping raise funding for the research.

It describes how patients’ friends and close relatives often distance themselves and don’t ‘dare ask’ how they are. In some cases, the report warns that patients’ own children stop visiting them because the deterioration is ‘too hard to watch’.
And it also cites figures from a study in 2012 involving 157 dementia patients which found one in four had tried to hide their symptoms from family and friends.
George McNamara, head of policy and public affairs at the Alzheimer’s Society, which was also involved in the report said: ‘We’ve come a long way in terms of raising awareness but we still need to do more as a society to banish the stigma surrounding dementia once and for all.’
In a forward to the report, Professor Alistair Burns, a Department of Health expert on dementia and Baroness Sally Greengross, chairman of the All-Parliamentary Group on dementia, write: ‘We still have much to understand about why dementia remains outside the realm of acceptable conversation.’
Early symptoms of dementia include loss of memory, difficulties concentrating, depression and confusion. Certain drugs including donepezil, rivastigmine and galantamine can temporarily halt the decline but only if given in the early stages.
Last year David Cameron pledged to make dementia a national priority and said there would be a cure by 2025. The Government has also promised that by next year doctors will have diagnosed two thirds of all patients with the illness.
Recent estimates show diagnosis is as low as 45 per cent and in some areas as low as one in seven.
Last week it emerged NHS officials were planning to pay GPs £55 for every new patient diagnosed with dementia between now and March.
A Department of Health spokesman said: ‘Real change is needed, that’s why we are working with the Alzheimer’s Society and Public Health England to help tackle stigma and increase understanding.’

Sunday, 26 October 2014

Living well with dementia

I have always said that it is possible to live well with dementia, if things go right from the start. 
It's all about getting an early diagnosis, like any other serious illness, and having support from family and friends where possible right from the start.

I know that some people do not have family for support and my heart goes out to them, but there are also people who have family around them, but never get support, because people for some reason back away when a person gets dementia, and this makes mee feel sick at times. Some family members refuse to accept the diagnosis, and this had a knock on effect.

But if we get support from people who mean a lot to us then the sky is the limit. 

However we must also try these days to get support from doctors, nurses, social workers and everyone else in the health and public services. This is taking a very long time and is hit and miss at times, a post code lottery that many in government circles deny, but whether they like it or not it does exist. 

This should also take in people like physiotherapists and occupational therapists, who give us a lot of support. I will however say that some of these people do not understand dementia as well as we would expect.
 I did however have an assessment with a physiotherapist a week ago, and was staggered when a young lady walked into the room, because she looked as if she should have been in school, but she was brilliant, and very helpful
My wife said later that It is because I am getting old and this makes nursing staff etc look so much younger.

Many universities are training nurses to understand dementia and that is a brilliant start, but we also need doctors and consultants to start understanding our problems. 
I am honoured and privileged to work with Northumbria University, where I talk to graduate nurses on a regular basis, and I am thrilled at their standard of nursing training, and dementia work they are doing.

The other day I heard about a consultant who would not listen to a carer, because she was not his patient, I have to ask what planet this person came from in this day and age.

 I think we should also take on board that one person with dementia, is not the same as norther person with the illness. There are so many variations of this illness, that no two people, even two with the same type of dementia are the same. We are all individuals, with totally individual symptoms and problems 

Let us hope that before long dementia training will be given to all staff in the public and health sector, so we are treated with dignity and respect, the same dignity and respect that others demand and expect as their right