Thursday, 25 July 2013

Away for a break

We are going to my brothers caravan for a few days to relax. I am starting to look forward to going as its on a beautiful private site overlooking Holy Island, and as its private it gets very quiet, just what I need at present.

I may also try to get out to the Farne Islands, where there is a bird sanctuary along with Seals.

Tuesday, 23 July 2013

Infrared light may reverse dementia and memory loss

 This sounds interesting. I had heard about this a few years ago, and now its back in the news.

Researchers at the University of Sunderland may have found a simple key to solve the problem of dementia and memory loss and even reverse these effects of aging.   They have shown that regular exposure to low-level infra-red light can improve learning performance and trigger regeneration of the cognitive function of the brain.

The results are a scientific breakthrough as current pharmaceutical treatments for diseases such as dementia and Alzheimer's can only slow down brain deterioration.  

The researchers claim that early stage dementia patients should see an improvement in their cognitive function within four weeks, by wearing a specially designed lightweight helmet for just ten minutes a day.

Human testing of the infra-red treatment on the brain is due to start this summer.  

The new infra-red device was created by Dr Gordon Dougal, a director of Virulite — a medical research company based in Newton Aycliffe, County Durham — which is also behind the innovative device for curing cold-sores.
Dr Abdel Ennaceur, Dr Paul Chazot and Dr Gordon Dougal with a prototype cognitive helmet
Lead researcher at the University of Sunderland Dr Abdel Ennaceur and Durham University’s Dr Paul Chazot are pictured with Dr Gordon Dougal and a prototype cognitive helmet
He came up with the idea of using a safe level of infra red light on the human brain after it had proved effective in the treatment of cold sores — a process that relies on boosting the cells within the body responsible for killing the virus, rather than attacking it.

The infra-red light used has a wavelength of 1072nm, which occurs naturally in sunlight and, at the intensity levels used, is considered completely safe. Dr Dougal said: “The implications of this research at the University of Sunderland are enormous, so much so that in the future, we could be able to affect and change the rate at which our bodies age.

“As we get older, cells stop repairing themselves and we age because our cells lose the desire to regenerate and repair themselves. This ultimately results in cell death and decline of the organ functions, for the brain resulting in memory decay and deterioration in general intellectual performance.

“But what if there was a technology that told the cells to repair themselves and that technology was something as simple as a specific wavelength of light? Near infrared light penetrates human tissues relatively well, even penetrating the human skull, just as sunlight passes through frosted glass.”

Dr Dougal, who claims that ten minutes of exposure to the infrared light daily would have the desired effect on the brain, added: “Currently all you can do with dementia is to slow down the rate of decay. This new process will not only stop that rate of decay but partially reverse it.”

The research by University of Sunderland neuroscientist, Dr Abdel Ennaceur has led Dr Dougal to arrange clinical trials with patients with age related memory problems.

Fellow neuroscientist Paul Chazot, who helped carry out the research, added: “The treatment can indeed improve learning ability. The results are completely new — this has never been looked at before.

“Dr Dougal’s treatment might have some potential in improving learning in a human situation by delivering infra red through the thinnest parts of the skull to get maximum access to the brain.”

Further research work will continue in this area, funded by Cels, who support healthcare research and development in universities, hospitals and companies within the North East of England.

Dementia risk in UK going down, suggests study

I have just read this and thought what wonderful news it was.

Over the last two years or so everyone had been saying that the number of people being diagnosed with dementia was increasing at an alarming rate.


  Experts hope the downward trend will continue

Older people's risk of getting dementia is going down in the UK, research suggests.

A study in the Lancet reveals a smaller proportion of older people living in Britain now have the condition than experts had predicted.

Researchers say it could be a reflection of improving public health.

The work looks at three areas of England - Cambridgeshire, Nottingham and Newcastle - and compares dementia rates in people born 20 years apart.

Based on 1991 trends, experts had predicted 8% of over-65s would have dementia in 2011.

The actual figure for 2011 turned out to be just over 6%, the Cambridge University team discovered.

“Start Quote

This could be because known risk factors for dementia are on the decline”
End Quote Co-researcher Prof Tony Arthur from the University of East Anglia

Applied to the whole UK, it would mean there are 214,000 fewer cases of dementia than predicted - a 24% reduction.

This suggests there are 670,000 people living in the UK with dementia, rather than the 800,000 - 900,000 figure that experts currently cite.
Managing disease
Prof Carol Brayne and colleagues who carried out the analysis say the UK is still seeing more cases of dementia year on year as a whole because of the nation's ageing population.

More people are living to increasingly old ages, at which they are expected to be at the highest risk of dementia.

But for the individual, the study findings appear to be good news.

Co-researcher Prof Tony Arthur, from the University of East Anglia, said: "When you compared the two cohorts born 20 years apart you see that dementia prevalence has gone down.

"This could be because known risk factors for dementia are on the decline."

He said there had been improvements in managing cardiovascular disease, which has been linked to an increased risk of dementia.

"More people are spending more time in education as well which might be protective," he added.

Dr Eric Karran of Alzheimer's Research UK said the study was robust and made reliable comparisons by looking at two groups of over-65s from the same geographical regions and using the same assessment and analysis tools, 20 years apart.

"One interpretation of the findings is that general health and health management has improved to the extent that it has helped reduce dementia risk, which is encouraging news for us all," he said.

"However, this study clearly demonstrates that the risk of dementia can change with time, and for future birth cohorts it will be important to track, for example, the effects of the increase in obesity in the general population."

The Alzheimer's Society agreed, saying: "While this is good news, this is one study which needs careful examination and may not indicate a continuing trend.

"For example, we also know that other risk factors such as obesity are in fact increasing.

"Dementia remains the biggest health and social care challenge facing the UK. Today's research doesn't mean we can take our eye off the ball. With no cure, few effective treatments and an economic impact dwarfing that of cancer and heart disease, more research is needed to identify the causes of dementia and how to reduce people's risk."

The results are part of the MRC Cognitive Function and Ageing Study of more than 15,000 older people.

Monday, 22 July 2013

The benefits of getting on with life after the diagnosis of dementia


There are many ways of looking at the diagnosis of dementia, although in the mid to later stages of the illness there may be little we can do to change things. However in the early to mid-stages, I feel that it is important to try to get on with life and if possible start a new life.

My consultant told me to keep looking forward and to forget the things that were becoming hard to cope with.

Through this I have moved on, but many cannot do this as they struggle to come to terms with the illness, through either denial or the stigma which we see attached to this illness, or in some cases the illness was simply too late in being diagnosed.

I am contacted daily by email either from this blog or through other means about my problems, some of which have been discussed in the blog, and where possible I try to answer them.

But in my answer there is always one comment, and that is we are all different with vastly different symptoms and problems, even in one variation of the illness. We are all individuals, and go through the illness our own individual way.

  It’s very important to keep as active as you can, either with hobbies or finding something new to do, even though it may be hard to get going, because the benefits are massive.

The thought of sitting down and doing nothing never ever, got into my thoughts, as that would have been the end, just like giving in to the illness.

Yes I had a strong willed wife and Daughter who would not let it happen, as they were even more determined to keep me active.

I confess that I had not bargained for my daughter, when she said that she was not ready to let me go, to the illness and I was going to do as I was told?

I love her dearly as I do my wife, and they keep me going when times are hard.

I have met a few people who do nothing at home and they all seem to be sliding away, from their families.

To me, keeping active is one important way to keep the illness at bay, but I admit that not everyone can do this.

I was encouraged to keep active, but I cannot swim these days as I have lost my coordination and tend to swallow more water that enough.

I don’t go to the Gym because I cannot remember what I am supposed to do, so I walk as much as I can each day.  

At least walking can be done in my own time and at my own pace, and this encourages me to do as much as I can. I am also considering getting a small dog, which will be company when I am out and could also give me more confidence, so I know that I will carry on walking for as long as possible.

Keeping the brain active can also help by doing things like crossword and word search puzzles.

I used to love Mahjong but that is limited these days due to my eyes, which are giving me a hard time, as I have double vision art times.

I no longer attend as many meetings like I used to do, but I still try to enjoy myself as much as I can.

But each time an obstacle comes my way I try to find something else to do as sitting still is something I find difficult

Friday, 19 July 2013

Another wonderful honour

I have just heard that a dear Friend in has been awarded an Honorary Doctorate at the University of Strathclyde in Scotland, for all of his work in Dementia.

James McKillop has worked in and around the Dementia field for what seems a very long time, and a better friend or acquaintance you could not find anywhere.

I met James and a few other people at the First UK Convention for people with Dementia, when it was held at Newcastle upon Tyne a few years ago, and I was so inspired that I have never looked back.

He also inspired me to carry on with my favourite hobby which is photography, as he is so brilliant at it.

James and his friends on the Scottish Dementia Working Group, have done so much to raise the profile of Dementia in Scotland, and they also work directly with the Scottish Government and Alzheimer's Scotland, on Dementia projects

Its wonderful to see people like this being awarded like this, as they have done so much to inspire others to stand up, campaign and speak out about dementia.

Well done James

Thursday, 18 July 2013

Suprised at pickup

Just returned from a holiday at my daughters and was amazed when I looked at my blog as it seems to have taken off completely.

On 11th November last year I set up this blog as a way of keeping my brain active for a little longer, but I had not expected it to go on the way it did.

I had written the original blog four years ago when my consultant told me to keep as active as possible, in the hope that it would help slow my Lewy Body Dementia down.

However I did this as an online diary and never considered the fact that other people would be reading it. I lost that in early November when i pressed the wrong key and deleted my Google account by mistake.

I tried to get it reopened but Google were not interested, so I had to consider whether to give it up as a lost cause, or start all over again.

I decided to stay active and start again, remembering that all if my posts were written in Word documents and saved on my computer.

The old blog had reached 10,000 page views in the four years it was running was read in 85 countries.

Today this blog has reached 10,450 page views in 73  countries, something I find truly amazing.

Now I have to keep it going for as long as I can although life is slowing down a little these days.

But I would like to thank all of the readers and those who send in emails as they have helped me to achieve so much.


Sunday, 14 July 2013

Too hot

Since we arrived at our daughters house in Farnborough Hampshire, I have found it hard to cope with this hot weather. It was 20 degrees yesterday morning at 7am and that was hard enough, but when it reached 29 degrees at lunchtime I had to give in and sit in a darkened cooler room as i could not think clearly at all.

Today it was 22 degrees by 8am, so I am wondering what will happen to me later on.

The family went out to a childrens party yesterday which was held in a local hall with air conditioning, but they did not think it wise for me to go because of the sheer noise, so I had a sleep for half an hour.

Here's hoping it does not get too hot.

I suppose my problem is the I have never been a person who sits in the sun, so I struggle when temperatures rise these days.

Friday, 12 July 2013

Weekends holiday

I am off to see my daughter and family in Farnborough today, and will return next week hopefully feeling a little more relaxed after this weeks eye tests etc, which have taken it out of me a little.

This has been a bit of a stressful week all round, as we seemed to have more problems than we needed, but not all to do with us, but we somehow got dragged into it, and when it concerns family members there is not much you can do about it.

However it will be nice to see the grandchildren again, as I have not seen them for some time.

All being well when we return, we are taking them to the sea side as they do not live near to the seaside where they live and the children love playing on the sand and in the sea.

We are borrowing my brothers caravan for a week, and this looks out to Holy Island where Saint Cuthbert lived, and the Farne Islands,  somewhere I think is magical and so beautiful when the weather is nice.

Sometimes the seals come up to the shore and watching them is so relaxing, as well as all of the sea birds which we don't see in land.

So we will see how things go over the weekend, although the weather is supposed to be very hot which does not suit me, but when you are with family members it makes it a bit easier to cope with

Wednesday, 10 July 2013

Bad Day

I have been playing Mahjong and enjoying it for the last few months, but now I am finding it hard to do  through my eyesight.

I found it easy to do when I could match the tiles up, but over the last two weeks my eyesight has been playing up, so I am going to have to give it a miss for a few weeks.

I have to attend an eye hospital at the end of the month to see what is causing my problem, so its a  case of wait and see.

I have also been struggling with my blog over this time, so I am hoping that this problem can be corrected, as doing this means a lot in my life

This has caused some distress as it has taken over my life, and while I was coping with the Lewy Body dementia, I find the eyesight problems hard to cope with.

Monday, 8 July 2013

Dementia and Employement

Dementia diagnosis and employment

I have been asked recently about the support I was given by my employers, when I was diagnosed with early onset Lewy Body Dementia at the age of 56, and I was too embarrassed to say anything.

I was lucky to have been given a lot of help by the university doctors during the diagnosis, but they were horrified to discover that my employers did not really want me back at work.

They made me take the decision of whether to go back as a cleaner after being an engineer for over 28 years, or take early retirement on medical grounds.

I was advised to go for the second option as they like myself felt insulted, by their answer.

But when we look around many employers do exactly the same simply because they don’t understand the illness and are also totally embarrassed that one of their staff have this type of illness.

I know that I am not the only one this has happened to, but it does not help others, so things must change and change for the better.

Yet other people in more high profile jobs had come out the same way as me, from college lecturers to other jobs.

Employers need to be made to understand what the illness is and what they can do about it in the early stages, such as support, and any help available.

If they don’t understand the problems they are up against they should go out and ask, those who have the knowledge, or they should look it up themselves.

I know that in all honesty I could not have carried on doing my job, but I do think they could have looked at this in a more caring way than simply come up with this type of answer.

To say that they doctor was upset was an understatement, she was nearly spitting blood with anger when she read the response from my employer, and then was too embarrassed to tell me until she cooled down.

Perhaps it was not professional of her to lose her cool, like that as she was a quiet spoken lady, but I think she shared my feelings and where I hit my hurt she let it all go.

To her the thought of me going back as a cleaner after all those years was just not on, and I understood this when it was all explained.

I think that the other problem was that my employers clearly were not interested in finding out more information about the illness, perhaps because they were stuck in the past with their memories if any of dementia, and were incapable of looking at the obvious

I cannot remember much of my job, which is not a bad thing, so perhaps I took the right decision


Thursday, 4 July 2013

Sunderland dementia patient doing the three Peaks

I read this and was truly amazed and pleased that someone else is showing what can be done after a diagnosis that would make people give up living all together.
Years ago I did the Coast cycle ride from Cumbria to Sunderland and although the second day was rubbish as I kept forgetting which gears were which I can say it was the experience of a life time

Well Done Ray and I really hope it all goes well. Please keep this date in your diary and lets hope he achieves his goal

You Can Have A Good Life Despite Alzheimer’s’ – Sufferer Prepares For Three Peaks Challenge By Nisha Joshi Location: Branton, Northumberland
play video
Video: Alzheimer's sufferer's positive message

An Alzheimer’s sufferer from Sunderland is encouraging other people with illness to remain positive as he prepares to take on the Three Peaks Challenge to fundraise for the Alzheimer’s Society.

Ray Kirton, 55, originally from Sunderland but now living in Branton Northumberland, was diagnosed aged just 52 after he and colleagues noticed his increasing forgetfulness during his job selling heart and lung machines to hospitals around the country.

The successful businessman was forced to leave his job and his wife went back to work to support the family financially.

“It was very difficult when I was diagnosed,” he said.

“Thankfully my wife turned everything round.”

His wife, Kiran, introduced measures such as a calendar on which his activities are written so that he can be reminded of his day-to-day plans.

She also arranges regular trips away for the family so that Ray is kept busy and stimulated.
Despite missing some of the things he used to do, Ray remains positive.

He said: “I really miss work. I’m not the same as I was before.

“It’s just a little bit sad when there are things I can’t do anymore, but I have to just try and do what I can.”

Ray currently has mild symptoms such as losing his train of thought when speaking but his memory will worsen over time.

“I’ll be there at some stage, but I’ll certainly fight and with my family I’ve got everything to live for.”
Ray keeps very active. He walks regularly in the Northumberland countryside and has even completed a climb to the top of Ben Nevis along with friends and family, raising £4,500 for the Alzheimer’s Society.

On July 28 he will complete the Three Peaks Challenge as he aims to match his fundraising total for the Ben Nevis trek.

He added that he hopes to raise awareness of Alzheimer’s through his challenges, encouraging others to see a doctor as early as possible if they experience increasing memory loss and reminding them that a good quality of life is possible if diagnosed.

“Okay it’s Alzheimer’s, but you can still have a great time. Always be positive,” he said.

Dementia care at South Tees Hospitals inspired by the past


Helen Robinson demonstrates software used in dementia therapy at James Cook Hospital Staff at James Cook University Hospital in Middlesbrough believe glimpses of the past can help dementia patients

Related Stories

The touchscreen display flashes up newspaper front pages covering historical events.

Another set shows old high streets from decades ago, buildings long since flattened standing tall over shoppers dressed in the fashions of the day.

Traditional seaside holiday scenes are featured alongside old school photographs.

All these visual reminders are designed to trigger memories in dementia patients on Teesside.

Staff at James Cook University Hospital in Middlesbrough are demonstrating the My Life Software which uses photographs, news clips and even karaoke to provide a stimulus.

"It's all about generating ideas for discussion," clinical educator Gina Warren said.

"Even things like remembering that shops used to close for half a day on a Wednesday could start a conversation."

'Lonely existence'

The computer programme is a form of "structured reminiscence therapy" aimed at helping people with dementia retain a sense of who they are.

"A lot of these people spend a lot of time in hospital on their own," clinical educator Helen Robinson said.

"It can be quite a lonely existence. Getting people interacting and talking is a must and photos are such a stimulating thing.

"Instead of seeing the patient you start to see the person."

Staff are appealing for more images from around Teesside and North Yorkshire to be used at James Cook and also the Friarage Hospital in Northallerton.

They're also collecting items for "rummage boxes" - things like Oxo tins, ration books and old coins which can be used as physical stimulators.

Dementia strategy project manager Beth Swanson browses the music choices on the interactive screen Dementia strategy project manager Beth Swanson browses the music choices on the interactive screen

While many of the photographs date from the 1950s and earlier, the trust is keen to add more recent images and other material.

Ms Warren said: "I think the common misconception is that dementia only affects grandmas and granddads but it can affect young people as well.

"You do occasionally get someone who's in their 40s who still has their children at home."

The software allows patients to build their own life story with personal photographs, favourite songs and the opportunity to sing along with karaoke.

Ms Warren believes using the material - "low-tech" versions are available - can also help relatives of people with dementia.

"Family and friends will feel that they're hopeless and there's nothing they can do," she said.

"That can be really disempowering, but, if you can give them a tool that they can use with the patient, it benefits the relationship between them."

Wednesday, 3 July 2013

Dementia Screening

Doctor warns against dementia screening

A couple of months ago I wrote this article, and have decided to revisit it because it has caused so much upset by its misuse by the press.
I like everyone else with this illness read press articles and assume that they are correct, but its only later that the truth comes out

However from what I understand it was a piece of research to see whether it was feasible and in fact cost effective to do dementia screening and what the implications would be.

Wednesday 17 April 2013

The routine screening of all elderly patients for dementia would be a “disaster” as the stigma and anxiety caused by being diagnosed before symptoms appear could greatly outweigh any benefits, an expert  has warned.

Screening is pointless in any case, because there is no treatment for dementia and no prospect of an imminent breakthrough,  says Dr Chris Fox from the University of East Anglia’s medical school.

At present, routine screening does not take place in the UK, but some have called for it. A diagnosis can be made following cognitive tests and a brain-imaging referral.

But Dr Fox, who will speak at the TEDMED Live healthcare conference in Bristol later today, believes the risk of misdiagnosis is too high. “World figures for dementia are skyrocketing towards a predicted 60 million in around 10 years,” he will say. “We are experiencing a dementia tsunami, with the crest of the wave yet to come. But rolling out routine dementia screening will be an even worse disaster. People who are diagnosed with very early-stage dementia will be worse off than people who are not diagnosed until their dementia is more apparent.”

Dr Fox adds: “Current tests are not particularly robust and there is a relatively high risk of misdiagnosis so all of this turmoil could be even more unnecessary. It is unfair to cause fear and concern when treatments are not available, the chances of the condition actually progressing are not clear, and when symptoms may never take hold in the patient’s lifetime.”

A Department of Health spokeswoman said: “There is currently no benefit in trying to diagnose people with dementia before they show clear symptoms. We do, nonetheless, encourage an early diagnosis and referral for those who show symptoms.”

I read this article and wondered what the Doctor was trying to say, and I confess that at the time, I thought that he was wrong to say it.

But on refection, I am not sure whether this is all factual or whether its all down to the  press writing their own version of events.

I am more inclined to wait to see what the Research Doctor has said, rather than believe the press, because as we all know the press always write things to suite themselves, true or not.

In many cases a dramatic headline does a lot of damage, especially when its been taken out of context 

But as someone with Lewy Body Dementia, I know that we may all show signs of dementia in one form or another when we get diagnosed , but as I understand it there are many illness which mimic the illness, and until we get further into it we don't really know whether our diagnosis was right first time.

I think I understand that many people have been diagnosed at an early stage, and this could lead to accusation's of misdiagnosis, if it was done in a hurry as screening could be.

I say that because cancer screening is not perfect, as we are always hearing of problems in the news.

 When we consider that there are going to be many thousands more being diagnosed in the future, in fact the facts state the figures will rocket over the next few years, so we need to look for better ways of finding cures etc.

I have had two diagnosis-es of Lew Body dementia, but to be honest I am not convinced, I know that there is  something very wrong, and get very agitated when I cannot do the things that I have done for many years, and  I can not always remember what I am trying to write or say

My life is not what it used to be and things change on a weekly basis.

But as one consultant said, the only way to make sure is at the point of death, when the brain can be removed and looked at.

I found out later that this had been totally fabricated by the press to publish the wrong information. 

 But in all honesty, until we get a better way of treating the illness, what is the point of screening people in the masses as it only prolongs the agony, and not everyone can cope with the diagnosis of dementia.

But we all need more research of one form or another, so that those following in the future have a much better chance of survival and if possible a cure.

Many people can not cope with the results of the diagnosis and many simply don't want to know, whether because they are frightened of the term dementia, or they simply refuse to accept that their is anything wrong with them.
But whether we like it or not research has a big part to play in dementia, and we must do all we can to play our parts in this as people with dementia.

Its only my opinion and I may well be wrong myself, but I live in hope that a new treatment may come soon for those who follow behind, but I know that without the researchers doing their job like this, we will never get anywhere.

I know that eventually screening for dementia will be quite common, and we will look back and wonder what all of the fuss was about in the first place, so lets all get behind the research people and give them all the help we can, whether the press like it or not.

We owe it to those who are coming behind us in the future. 


Monday, 1 July 2013

Dementia and treating us with dignity

I got involved as a Dignity Champion a few years ago, after listening to people discussing the problems associated with dementia. However at an event and was so annoyed by the lack of dignity and care that I decided to do more, and help out where I could.

During this time I have spent time trying to raise awareness about the lack of Dignity and Respect, when treating people who have this illness in care homes and General Practise.

Over the last two or three years, I have spoken at events in North East of England Universities, where people are trained to do Nursing and social work, as I feel that it is very important to get in at an early stage and tell people how they should be treating people with dementia.

I also feel that by spelling out guidelines of how we would like to be treated, we are starting to have an effect, as most people “realise” that we are not asking for the world, but simply for things that most people take as normal.

I think that many people shudder, when we tell them how we want to be treated, as they then realise, that there is something fundamentally wrong with the training that many receive these days.
A few years ago, I spoke at the Launch of the Living Well with Dementia project, which was held at Middlesbrough, and after talking about Dignity and Respect, a few people came up and asked if they could use my script in their training at hospitals. 

 This was something that I had not expected, but I did not have to think twice about it, as I felt that it was very important, to get in at an early stage.

It also proved that these professionals were admitting that they did not know it all, and were openly  asking for my help as a person with dementia

Training people to understand the needs of those with this illness is not as easy as it looks, as there so many variations of dementia and we are all individuals, so I offered to go to speak to anyone who is training students etc, so that they will get a better understanding of what is needed, and how to treat people with dementia with the dignity and respect and care, THE SAME RESPECT THAT THEY WOULD EXPECT FROM OTHER PEOPLE .

It was pointed out at one event, those with the illness are in a better position than GPs or consultants, to tell others how we should be treated, because we are going through it on a daily basis.

There are many roles that a person with Dementia can do if given the support and help, and being a Dignity Champion is one of those, and I do feel that I am helping many people to understand the needs of those with this illness. There are many more people out there like me, so why not allow us to help you, and also help ourselves.

One of the main problems we hear about these days comes from the fact that many people think that because they know or have looked someone with dementia, that they understand everything thing about it and know all about its problems.

But this is far from the truth and there are well over 120 variations of this illness, and in each case, the people with the illness have different symptoms and struggle in different ways to others.

Even two people with the same form of dementia, can have vastly different symptoms and problems. This causes confusion to many people, but as we now know there is nothing straight forward about this illness.

Treat us with the dignity and respect that you would expect from others

By educating and training people to understand the problems people with dementia struggle with on a daily basis, we will then start to see people with dementia being treated with the care and dignity, that you would want from others.

Please don’t patronize us by asking a question and then trying to answer it. Give us the chance to think of the answer, as in many cases we need time to process the information before giving you the answer. That answer is better coming from us.

Look us in the eyes when asking these questions as we are human beings like you, apart from the problem with our brain.

I hate it when someone asks my wife how I am, when I am stood next to her, just how rude can you get. I am not a ghost or invisible, I am here and right in front of you.
Look at the person and not the dementia.

Remember that many get flustered because unlike you, they simply cannot come straight out with the answer, and if things go wrong we sometimes come out with the wrong words, and that leads to accusations of aggressive behaviour and being rude.

I have heard this on many occasions, which makes me think that the accusers really do not have a clue about the basics of this illness.

Treat the person as you would have done before the dementia, we may have an illness, but in many ways we are the same as you, we are all human.

Try to speak clearly, carefully, slowly, and where possible face to face, so that we stand a chance of understanding what you are trying to say.

Please don’t assume that you know all the answers about dementia and what it is like to live with it, but ask us, the people living with Dementia, and we will tell you what our problems are, or at least try to explain them to you.

Remember that people with strong accents, asking questions can be difficult to understand when you have this illness. As someone who grew up in the North East I now struggle with the accent these days, so if it is difficult for me, think what it is like for others.

Try to speak in a calm voice and not get agitated otherwise it makes those with the illness react in the same way.

 Do not discuss our problems with anyone else while we are there, as that is hurtful and disrespectful, we have ears and a tongue, and so we can answer back ourselves.

 We all develop routines that help us to get through each day, so please don't stop us doing this.

Some of us struggle with horrendous and quite vivid nightmares and dreams, leaving us very tired and perhaps agitated the next day. When this happens, we sometimes need a short nap during the day to catch up.

So please don’t tell us that we should not try to sleep during the day, when we could not sleep at night because of these nightmares.

People who say that we should not sleep during the day simply do not understand our problems.


Does the NHS really understand Dementia

Many people struggle with daily problems, while trying to manage the ever changing, things in life like technology which they may or may no...