Showing posts from 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 th…

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 …

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. Scroll down for video  SHARE PICTURE Copy link to paste in your message
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 dia…

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 …

Does the UK government really care about dementia

After being involved in dementia projects for a few years including government projects I wonder if I am becoming synical, as many political parties seem to get involved, but do not have the real interest to get things moving poisitively.
The dementia strategy was launched and yet the money was nor ring fenced, and the strategy was not mandatory. It was not new money neither as the minister admitted that the money was already in the system and needed to be spent more wisely. 
We are now seeing Mr Cameron using dementia in the G8 summit, and now paying doctors £55 each to diagnose people earlier, something than many people are angry about. I do wonder why the money was not put into research rather than paying doctors to do the same thing they did two years ago,
Many of us feel that dementia is simply being used as a distraction, and really does not mean anything at all to politicians. 
One moment they are implying that dementia is age related, and the next they want early diagnosis, but th…

Dementia breakthrough: Experts reveal two key ways to fight disease

KEEPING the brain active and eating a healthy diet are the best ways to protect against dementia in old age, say experts.           
Studies show that a handful of walnuts a day can stave off dementia [ALAMY]

Two breakthrough new studies have revealed that being good with words and eating just a handful of walnuts every day can help stave off the ravages of the brain disease. The simple tips mean that millions of people could protect themselves from Alzheimer's in old age by introducing the easy changes to their daily lives.
There is increasing evidence that the key to beating the disease is to keep the brain active from middle age and to ensure a diet packed with health-boosting vegetables, fruits and nuts is followed. Proving the old adage "use it or lose it", a new study has shown that being good with words could help stave off ageing conditions including dementia. Experts have discovered that having a rich and varied vocabulary, just like TV personalities Stephen Fr…

Talking To Graduate Nurses

Today I had the honour to go and speak to graduate nurses at Northumbria University about Living well with Dementia.

This was the third of three sessions this term, and its amazing the different response you get in different sessions

The first was slightly subdued, partly I suppose because its not a subject that everyone wants to learn about.

The second got more response and some questions, but today for some reason, I seemed to get a response that was unexpected and difficult to cope with.

This was because a few people were in tears, and these days I find it hard when a person cries,  but they must have really understood the problems we undertake daily.

I am not complaining about these people crying, because there are times when this illness reduces me to tears when things become difficult, to do or understand

We had lots of questions at the end, and as my wife said there were so many questions, that it could have gone on for longer, but someone else was following us, and its unfai…

Patients blast £55 dementia diagnosis fee

Patients blast £55 dementia diagnosis fee Elderly care: A plan to pay GPs to diagnose dementia has been criticised. Below, Dr Amanda Thornton
A scheme aimed at boosting dementia diagnosis rates by paying GPs £55 for every patient they diagnose has come under fire.

Under the NHS England scheme, doctors would get the cash for every extra patient on their dementia register next March, compared to September just gone.
But the scheme has been criticised by the Patients Association as a ‘distortion of good medical practice’ and has also been given the thumbs down by the Royal College of GPs and the British Medical Association.
And John Davies-Allen, from Thornton, who was diagnosed with dementia two years ago, said he was “not happy about” the plan.
Mr Davies-Allen, 53, said he agreed more needed to be done to improve diagnosis of the condition and said he had been diagnosed at the Mount View Memory Clinic in Fleetwood after his GP missed signs including problems with this balance.
But he s…

New brain game from BUPA

I have been asked to trial a new brain game, and ask others who have this illness to try it and give their views.
The game was designed by staff at BUPA a private but highly respected health firm in the UK.
I tried this game and confess that I struggled with it, but I did wonder if that's my brain now. Not only does it test your brain, but it also tests your reactions and eyesight, as the squares appear to move at times , so you need to keep track of them.
I do feel that this will catch on when it's been launched, as brain training games have helped me over the last few years.

I have attached the email so that you can get a better idea of the work BUPA are doing

I have attached the link to the Websight, but if the link does not work, please do a search for it on the computers top search bar.

Hope you don't mind me getting in touch out of the blue - I'm emailing from Bupa  with news of a game we're launching which I thought might be of interest given your blog focuses…

Doctors to be paid more to diagnose dementia patients

Yesterday we heard that the government were going to pay family doctors £55 for every patient they diagnosed with dementia.This has caused many people to complain about this
For one reason they were paid they were paid to diagnose people a few years ago, and now they are being paid yet again for something which many regard as nothing more than bribery.
Surely these doctors should be qualified to diagnose people as a matter of coarse without extra payment. 
It has also been pointed out that some may try to raise the money by mis diagnosing patients, something which is causing concern among some people who have the illness.
When I was working as an engineer, I knew my job role, and never got extra money for doing my normal job so why should these people. 
Many doctors simply don't understand or know anything about dementia, many simply tell the patient that they are stressed or depressed, when they have no idea what he person is going through.
So please Mr Cameron stop using Dementia pati…

Brilliant day

I have a brilliant day today. It all started when I went to Northumbria University to speak to graduate nurses about living well with dementia.
Thus was a very good session, as most people seemed to be very animated and interested. We discussed all of the problems we face on a normal day, and also discussed being treated with dignity and respect.
After the session there were many questions, from people who wanted to know more about certain topics, but on the whole my wife and I felt it was well received, and well worth doing.
That was my second session this week, and I return on Friday to do the third and final session before Christmas. 
This university is doing so much work on dementia awareness, within most departments, that I feel honoured to be part of it.  I now feel that dementia is getting the prominence it requires in Newcastle upon Tyne, due to the work this university is doing.
Well done Northumbria University

Dementia: Diagnosis rates rising in South Asian community

Dementia: Diagnosis rates rising in South Asian community

The success of an Alzheimer's Society project in Rochdale means it will be extended to 15 more areas in England, including Oldham.

The South Asian community is seeing a faster rise in the number of people diagnosed with dementia than the general population.
There are more than 25,000 people with dementia from black, Asian and minority ethnic (BAME) groups in England and Wales.

This figure is expected to double by 2026 and rise to over 172,000 by 2051.

The Alzheimer's Society has been working in Rochdale with local faith and community organisations to create tailored services such as weekly information sessions and a Bollywood-inspired DVD in Hindi.

Project manager Diana Barbosa said the Rochdale scheme's success means it will be extended to 15 more areas in England in the coming months, including Oldham.
Language barriers
But a report from the All Party Parliamentary Group on dementia has found that…

NHS 'to grind to halt' with dementia warns professor

NHS 'to grind to halt' with dementia warns professor
Ministers acknowledge dementia is not being diagnosed fast enough

The NHS will "grind to a halt" unless more is done to help care for dementia patients in the community, warns Wales' only professor of geriatrics.

A quarter of patients in district general hospital beds in Wales have dementia as one of their conditions.

"It's a challenge that's going to get even bigger if we don't do something about it," Prof Anthony Bayer told BBC Wales' Week in Week Out.

Ministers admit a "new push" is needed on how dementia services are developed.

A recent audit of the NHS Memory Services in Wales by Prof Bayer compared the amount of money spent on patients in Wales with those in England.

It found that on average, memory clinics in England spend twice as much on staff for each new patient as they do in Wales. Wales also had the worst diagnosis rates in the UK.

Prof Bayer told the…

Why are people so rude

I was on a South West train going from Farnborough to London when I over heard a conversation between two well dressed city people.One of them a lady said that she was always getting a parking ticket for being late back to the car park, because the parking limits were too short, and she really needed more time with her friends. Her friend a gentleman, I used that term loosely, said that he had done that three times, but in the third day, he had told the parking warden that he had early onset dementia and had forgotten where his car was parked.  Guess what,  he got off. He told this lady to use this excuse, because if it worked for him once so he was going to do it again. My wife was not sitting next to me that day otherwise I guess, these two would have had a mouthful from her. I was very upset and could not believe that anyone could be so evil as to think of something like that. Many people with this illness, would probably get a parking ticket for being late, even though they have a good…

So young but so knowledgeable

Last month I saw a orthopaedic surgeon about my knee and hip problems. 
He had a very strong foreign accent, was so rude and thought that I just wanted a hip replacement, which I did not. To be very honest I do not want any operations at all, just want help to get around my problems on a daily basis. I had been told prior to this appointment that it was osteoarthritis in both joints, which was fine, but if wanted to know who to manage the pain and also see if I could get some physiotherapy which may help. I had seen a physio once, but he took no notice of my memory problems at all, and also refused my wife access so that she could help me to remember the exercises. However as I was struggling with my balance, my consultant at the i hospital had arranged some physio exercises which I can do at home, all of which are written out on sheets of paper with diagrammes where needed. 
Yesterday I was refered back to our local hospital for another physiotherapy assessment, where I was staggered to …

Dementia diagnosis targets: a problem of scale?

Dementia diagnosis targets: a problem of scale? GPs are under pressure to reach diagnosis targets for dementia, but the prevalence estimates on which
Calculating the likely prevalence of diabetes at a local level is fraught with difficulty. Doctors in the UK are under increasing pressure to boost diagnosis rates. For example, GP practices have been set targets in dementia and can trigger an inspection if they fall behind in other clinical areas such as asthma, diabetes and even depression. There are understandable concerns that patients might be left suffering or at risk due to a lack of a diagnosis, but what is the science behind these targets? Can you make a reliable estimate of the numbers of people who should be diagnosed but aren’t, when – by definition – you don’t know about them?
Science is all about measuring things, and when it comes to taking measurements you have to get the scale right. While it might be entirely reasonable to use the milometer in your car to calculate the…

The old photos helping trigger memories in people with dementia

The old photos helping trigger memories in people with dementiaBy Tom HeydenBBC News

Pictures taken by a little-known photographer between the 1930s and 1960s have found a new use helping to trigger memories and reminiscences among people with dementia. When Joseph Hardman died in 1972, his wife donated almost 5,000 glass negatives to the Museum of Lakeland Life and Industry in Kendal, Cumbria.
The stunning images document decades of daily life from all over the Lake District - from antiquated farming techniques to beautiful landscapes.
And now they've been used to help a group of people living with dementia in the region - taking their own versions of his images and using them as a catalyst to reminisce about their lives.
Hardman moved to the area in 1911 and between the 1930s and 1960s he covered up to 200 miles a week in a taxi canvassing the region and selling his photos to local newspaper the Westmorland Gazette, according to the…

Internet and people with dementia

Many people who have dementia use the internet on a regular basis, so that they can keep in touch with friends and family.Others use it to access online groups, or Facebook and Twitter. But these people are in danger of being hit with bugs and viruses, by those who want to cause distress, by hacking into computers.
Many people like myself have fallen victim to things like this over the years, because we don't always react as fast as we should do.  Please be on your guard and never open an e- mail from someone you don't know.  Always use a reliable anti virus software on your computer, and if your not sure about something, ask a friend who uses the internet. Always use passwords and write them down, then keep them safe. 

Befriending a person with dementia

Main people these days are supported from the point of diagnosis, by family and friends, who help them through the process, and keep them active.
However there are many who may not have family are friends nearby, and they may become isolated and desperately lonely
Many people have said that they feel isolated and lonely, because they had no one to talk to, and really did not have any past times to occupy their minds.
Alzheimer's Society in the North East are rolling out a befriending scheme, to help people with dementia, so that they may feel more integrated in society, and stop them feeling lonely.
This is a wonderful scheme, and I do wonder why no one thought about this earlier. Having someone to talk to, or go shopping, or for a walk with will make a vast difference to many.
I suppose it has endless possibilities depending on the volunteers, and there attitudes towards dementia. We should also remember that many people who have this illness do not make friends very easily as they may…

New Befriending Service in Northumberland

Alzheimer's Society - North East England
We have a new Befriending Service starting in South East Northumberland and need volunteer befrienders to join us! The service will provide personalised companionship for people with dementia.

Could you become a gardening buddy, a walking chum, a bake mate or simply pop round for a cuppa and a chat?

Contact the Volunteering Officer on 01670 511159 or email for more information.

This is wonderful news to many and I hope its starts to spread through out the North East

Photo therapy for people with dementia

Photo therapy for people with dementia

Fiona Phillips visits the Lake District to see how photographs taken in the area for a local paper more than 70 years ago are being used to help people with dementia.

Joseph Hardman's photographs chronicled a now forgotten way of rural life. He travelled around the Lakes from the 1930s to the 1960s producing images for the Westmorland Gazette.
The collection of more than 5,000 glass plate negatives are now being used by the Museum of Lakeland Life and Industry in reminiscence therapy sessions for people with dementia.
Fiona speaks to curator James Arnold from the museum about the collection.
She also visits people involved with the memory project including Joyce Grosvenor who was recently diagnosed with dementia.
Credits - still images are copyright and courtesy of the Hardman Archive and the Museum of Lakeland Life and Industry.

Inside Out is broadcast on BBC One North East & Cumbria on Monday, 13 October at 19:30 BST a…

Speaking in Weardale

Next Tuesday  I am off to Wolsingham in Weardale to speak to the Mothers Union and general public about living well wth dementia.
My wife is also doing a session as she is a member of the Mothers Union, and I said I would go just there to make up the numbers and help out,  although I have been told that I am expected to speak for a while.
I love this area, which is not too far from where we live, so it should be a nice afternoon. 
Many of these villiages are turning dementia friendly so it will be wonderful if Wolsingham follows and becomes dementia friendly.
Looking forward to Tuesday and this beautiful part of County Durham

Mini mental test

From what I was told last week, it seems as if the mini mental test is being scrapped, because it's only us is detecting Alzheimer's disease.I have heard many people complaint about thus test over the last few years and wondered why it was being used at all but now thus makes sense.  Other people use more complicated tests as I have spoken about before, but many are questioning these tests too, because the results mean nothing to those with the illness or carers, because there is no right to wrong answers. Or it seems that way.
I would dearly love a clinical psychologist to come on board to explain it all in plain language.
But someone said the other day that it's all to do with statistics?
If there is anyone out there who is willing to explain this in easy to understand language, I will gladly publish it on my blog, so that it helps others to understand it all.
There must be a hospital physiologist somewhere who can explain this in easy to understand words, so we can understan…

Humour in Dementia

Many people think that when we are diagnosed as having dementia, we lose our sense of humour.

Perhaps some people do, but on the whole many of use retain our sense of humour, as a way of fighting this illness.

I still like reading jokes, and enjoy a good laugh, although I have been told off by carers at times, simply because they thought that we should be deadly serious all of the time

To me laughter is one of if not the best medicine anyone can get, so why not enjoy what's let of your life and enjoy it.

I confess that there are days when I am feeling low, and simply cannot be bothered, but that's the nature of this illness.

The Scottish Dementia Working Group wrote a Joke book a few years ago, and the jokes were provided by the members of the group. I bought a copy of this which was signed by some of my friends in the Working Group

A few months later we were flooded at home and had to move out into a flat for about six months, something I really did not enjoy at all, as we …

Signage firm helps dementia sufferers Find home

Its wonderful to hear that someone has looked at dementia in places like care homes and Hospitals and is designing signage to suit those with the illness
A specialist sign manufacturer is leading the way in adapting care homes and hospitals for people living with dementia.

Find Signage provides products to more than 300 care homes and thousands of hospitals, both public and private, throughout the UK.

Signage is used to make it easier for corridors and rooms to be identified, in order to support those transitioning from home to residential care.

A leader in the field, Find has branched out to produce new lines of dementia-friendly home ware and activity products over the last eight years.
The business has projected turnover of between £1.5m and £1.8m for the current financial year.
Managing director Peter Rose told The Yorkshire Post the company’s products are “really simple but very effective”.

He said: “We all find it difficult to negotiate new environments, particularly when everyw…