Saturday, 28 September 2013

North East museums nostalgia sessions help dementia sufferers

Taken from a summer news bulletin

When Beamish museum was conceived back in the early 1070s I don’t think anyone would have thought that some many people would have entered the gates. They certainly did not consider the fact that so many people with dementia would go and get so much from it.

We now see Beamish Museum and Projects being run by Tyne and Wear Archives & Museums are leading the way in helping dementia sufferers researchers have revealed

Beamish engagement officer Michelle Ball

Beamish Museum

North East museums are leading the way in pioneering projects helping dementia sufferers with the power of nostalgia.

Working with Age UK, the Alzheimer’s Society and care homes staff at museums across the county are turning to hoards of memorabilia to improve the health and wellbeing of people with the condition.

Having studied the impact of such reminiscent sessions, researchers are now looking at how the projects could be rolled out countrywide.

Revealed today, the research has found the initiatives help dementia sufferers recall memories of sports teams from yesteryear, popular cafes that no longer exist and housing developments of the 1960s,

Nuala Morse of Durham University has spent more than two years studying the effect of projects being run by Tyne and Wear Archives & Museums (TWAM).

She said: “We are looking at how we can come up with a framework so this way of working can be applied on a more broad level in others parts of the country.

“This is new territory for museums, who are still learning how best to carry out these projects. It is vital that they come up with creative ways to enhance dementia sufferers’ quality of life, as well as helping to change people’s perceptions of what dementia sufferers are capable of.

“In Tyne and Wear outreach workers at the museums do a lot of work with care homes and people with dementia which involve handling kits filled with nostalgic items. The idea is that handling these objects can spark memories.

A lot of the evidence is anecdotal and in that moment, in that hour, staff are seeing that what they are doing is making a difference.”

Largely funded by the museums, the projects aim to encourage reminiscence triggered by photos, films, music and singing along with food and drink.

Dr Ealasaid Munro of Glasgow University, who has been alongside Nuala, said the projects were being developed at a time when the NHS nationally has been asked to clawback £20m.

He added: “These projects are being developed to reach out to individuals being failed elsewhere, particularly as a result of spending cuts to vital healthcare services. By rooting themselves in the local community, museums are also opening up new streams of income in an increasingly restrictive funding environment.”

Bill Griffiths, head of programming at TWAM said: “We are committed to working with healthcare partners to unleash the power of museum collections to have a positive impact on people’s lives.”

The nostalgia therapy is working well for dementia suffers and elderly people living in County Durham.

Michelle Ball is outreach worker at Beamish Museum which stages sessions in its pit cottage. She said: “Being in that 1940s and 1950s environment with a cup of tea can immediately help people feel comfortable.

“While they may struggle to tell you how they used to wash clothes, when they see the dolly tub they often instantly know how to use it.

“The sessions really help to stimulate and bring memories to people.”

I have seen this museum grow over the years, and even though I now have dementia I really enjoy travelling to see what events are going on.

Many like myself go up to the museum on a regular basis, and I am quite happy wandering around the exhibits all morning or afternoon and never get bored.

People like myself get so much pleasure when they go to this museum, because they can literally go back in time and see things that they remember from earlier years, and in my case I see things that I remember from my childhood years.

As I have just become a Volunteer with the Alzheimer’s Society, I am looking forward to supporting others who have the illness when the Museum has its dementia days.

If you have not been then please look it up, its well worth the effort


Friday, 27 September 2013

Action on Dementia in Sunderland

Action on Dementia in Sunderland 
A DEMENTIA group is hoping to expand its pilot services to help more Wearsiders and their families who are suffering from the illness.

The news came at Action on Dementia Sunderland’s AGM, which was held at The Place in Sunniside.

The organisation, which runs special memory caf├ęs for the benefit of Alzheimer’s sufferers and their carers, has piloted two programmes in the past year.

One is a hospital visiting service, which sees outreach support workers help patients cope with their dementia.

There is also a home visiting service, where carers are given a break from looking after their loved ones.

It’s believed there are about 3,300 people with dementia in Sunderland, with many of those still yet to be diagnosed.

“I think we have been, given the circumstances, very busy in the past year,” said chairman Ernie Thompson. “We have become a registered charity and been successful despite the economic climate.

“We want to continue both of the pilot schemes which have been very well received, so we are seeking further funding to do this.” Members are hopeful they will scoop money after they entered the Echo’s Do A Lotto Good campaign to win cash from the Big Lottery Fund.

Dr Paul Donaghy, a clinical research associate at Newcastle University, was at the meeting to talk about research into dementia treatments in front of the assembled audience.

Deputy Mayor of Sunderland, Coun Stuart Porthouse, also attended.

He said: “We believe it is very important to help in promoting all the good work carried out by Action on Dementia Sunderland.

“It’s very important knowing that any money donated is spent on the residents of Sunderland.
“Dementia is a disease that affects 820,000 people in the UK.

“Most people with dementia are over 65 and, therefore, affects many family members who become carers.

“Dementia is very often a lengthy journey, often 15 years or more, and the more we can contribute to this very worthy charity, the more help can be done in the community.”

Well done to Ernie and his team, they have done so well since starting up and I am sure they will achieve their aim in the future  

Tuesday, 24 September 2013


Today my blog is read in 102 countries and has now over  17.000 page views, something I never thought I would see, when it was meant as a simple online diary after my diagnosis of early onset Lewy Body Dementia.

Its nearly 11 months ago since I lost the old blog on Armistice day 2012, our wedding anniversary, when I somehow pressed the wrong button and lost everything

I realised that I had two chances, either let it all go or start again with a new blog,

Luckily for me I had done all of the pages on Windows Documents so they were all saved on my computer, and I have not looked back since. '

The odd thing was that all of the old page readers came back very soon after stating the new blog and I have far out done the old blog with readers and page views.

So its been an amazing day and could not have done this with out all over the regular readers from around the world. Its strange but I somehow feel that its all friends reading this blog now, because they all come back everyday.

Many thanks to you all for giving me a reason to get up each morning and do something tangible and certainly not expected. It would have been too easy to stop and give in to this illness but you all kept me going.


Monday, 23 September 2013

Sue Ryder and Dementia

Charity Sue Ryder is to set up a new service aimed at improving dementia care in Doncaster.
The organisation aims to set up, in a variety of meeting venues across Doncaster, Peer Support Groups for people with dementia and their carers.

Sue Ryder will be working with local shops, businesses, clubs, groups and networks to increase the awareness of dementia and the role that everyone can play in helping to support the local community and individuals by providing information and guidance.

There is also a dementia befriending scheme that compliments this project and happy to discuss this.

The team will be on hand to identify aims, answer any questions and to discuss how you can get involved.

The meeting will take place on Wednesday 2nd October between 10am and 2pm at Town Fields Pavilion.
For any further information please contact Marilyn Cockett or Debra Blades on 01302 380077.

Well done this is brillant to see, and I can only hope that more support groups get set up in the future, so that people with the illness don't feel so isolated, because they don't know who to talk to and ask questions

Sunday, 22 September 2013

Dementia and Spirituality

Some time ago I wrote a piece on dementia and spirituality, or what I saw as the meaning of this from a service users side of things. This took me around 4 weeks to write, simply because I could not be sure, what the topic was really about, even though I had been asked to give a talk about it.

I also had problems at the time finding the right words, which did not help

Spirituality means different things to different people, but it seems that there is a lot of deep seated upset about this subject as many people think its about religion and nothing else.

I suppose to me spirituality is about religion, but as a religious person, I did not wish to push my views onto anyone else as they are personal

However after a lot of searching on the internet, followed by a lot of thinking over two days I came up with my idea which I used, and it was a big success, So much so that I was asked if people and institutions could use it for teaching.

I had never considered this, and it came as a surprise, but it was a nice surprise and an honour, being able to help.

As I said before many people had problems with the religious side of the topic, but I feel that many of these problems go back to the days when a priest would spend time doing pastoral things in his or her parish, like going to visit the sick in their homes or in hospitals.

This does not happen these days, for various reasons, and its a topic which really annoys me at times, and I guess that it's this which annoys other people, so they will not discuss religious things with anyone.

However when we look at it from a different angle, it's about what we enjoyed doing in life, and what want from life.

The things which mean so much to us, and that is what we want to carry on with for as long as we can.

To me looking back its a form of life story, or the story about the person with the illness, their like and dislikes along with the things they may well hate, its all part of lifes format, and part of our individual spirituality.

As a person who has worked on Life Story work with the Life Story Network in the UK, I soon got into this talk, and encouraged others to het involved, as it helps us to learn so much about our loved ones, and many things we knew little or nothing about sometimes come to light, and we get a good picture of who the person is and where they came from.

Of course this can also bring up things which the person does not want in the public domain, this has to be considered before anything else.

But all in all its this persons life story, and its their for their loved ones and families to read in the future as well as when they are being cared for

I have learnt a lot about this now, and after the talk which was also a huge success, I am starting to look further into the subject on good days.

I confess that I got emails from all over the world which was amazing, so many that I could not answer them all, so it proves that this subject is something dear to many hearts, and I was pleased and proud of being asked to do it in the first place.

Friday, 20 September 2013

All fixed again

After an hour of pulling my hair our I managed to get my computer to work again, and then after another half an hour, I managed to remove the software that was giving me problems.

So all being well its all sorted and back to normal.

 The computer is like my right arm and when it does not work, I am in trouble, because I do so much on it to keep my brain active.


Bad start

Its been a bad start to the day, as I seem to have messed up my PC at home.

 I was trying to remove a piece of software that was giving me grief, but that has gone wrong and the computer is having problems starting up again. So its back to the stop gap lap top which is saving the day again.

I think is getting close to the time when I have to stop, trying to do things on the computer like this, because my brain just is not working as it should, and that causes more problems than I set out with.

This was just to get rid of some anti virus software which was causing more problems than it needed, still if I cannot get it started I will have to take it to the repair shop next week.

Thursday, 19 September 2013

Stress and Dementia

I often wonder what has gone wrong since my diagnosis of Lewy Body Dementia, but it would be easier to ask what has gone right.

When I was working the Bursar at my College used to say that she was amazed, when things went totally wrong, because I seemed to go into overdrive and thrived on stressful times. In some cases she would say that I was unstoppable, because once I had got the bit between the teeth, I would work all hours to get everything back to normal, even working through the night to achieve it.

I confess that I was shocked to hear that ,because as a University College Engineer, I was responsible for all of the College Buildings, the services, including all of the Electrical, Gas Water, Ventilation and Air conditioning systems, along with all of the maintenance team and contractors, and was on call 24 hours a day.

I know that times could be hard, especially when you were working through the night, and then up again at 6am to start on the normal day job, but it was my life and in some weird way I loved it.

I suppose looking back at old diaries to remember all of this, I just went into overdrive and totally ignored the College High Officials, because I knew what was needed better than anyone else, and was allowed to get on with it. Although I gathered from notes that I never took any prisoners, so  if any individual like an academic poked their noses into something they nothing about, they got a shock.

The odd thing was that I was protected by the Bursar, Treasurer etc, because I was respected and kept my head down

Yes it was a stressful job but I loved it, the sad thing is that I don't remember a lot about it all now, its a bit like a faded dream. I suppose its like last years flood at home. That is a forgotten part of my life, I remember odd bits and that is the lot, so where my wife lives in fear of another flood, I can't really help her. I get occasional glimpses of the flood but nothing concrete, I don't know if that's good or bad.

However these days, I have forgotten how to do the jobs that I used to do confidently doing my work,
and many are so dangerous that I would not even go there.

This includes all of my electrical training, which is a thing from the past, and even the electrical examination papers that I have seen look like a foreign language, and unreadable. I have managed to fit one electrical plug since leaving work, and my son had to check it as I was unsure as to whether  it was done properly.

I no longer take stress very easy these days, and that is very hard to cope with. I find that any stress sees me leaving the room, to find somewhere quiet.

Yes I now get stressed and sometimes very agitated, so I have tried to steer clear of anything which sets me off. However finding the right words and answers at times can cause this, so I have to try to work things out in my brain before opening my mouth. Otherwise the wrong words come out, or the right words in the wrong order, leaving me feeling very annoyed with myself.

I know that its all to do with the brain, but it does not help some days.

I don't know if this is a major part of my illness these days, but I confess that there are days when this gets me down.

I suppose in this day and age even the television is stressful as programmes like the BBC news are very biased and I find that so sad. I don't like to hear someone telling me what is right or wrong on Television, because I have a better idea than some of these presenters, I just want the news as it is without some political biased on it.     So I end up reading the news on the internet, where I can make my own mind up.

I was never political or had any views on politics, but now like many who have this illness, I seem to have gone the other direction, which at times is confusing.

Many people who have this illness end up with some form of depression too, but although I get stressed I don't think I am depressed, or depressed as I know it.

I just want the stress to go away, but I suppose most of this is down to the lose of all my training and hobbies, the things I loved outside family life.   

Tuesday, 17 September 2013

DenDRoN and the need to be involved in Research

There is a need for everyone who has any form of dementia, and who can so,  to get involved in research. I say this because without research we will never find the answers to all of the problems we see in Dementia today.

I have been a member of DeNDRoNs, Patient Public Involvement panel for a few years and can honestly say that I have enjoyed it. As well as being involved in research we also spend time looking at future research projects.

I myself got involved in a research program recently, and was amazed and pleased at the results, because in the past, when I had my eyes tested I was simply fobbed off, by being told that there was nothing obvious so it had to be the brain,

This project was about eyesight problems in people with dementia, and this is now something which is nearing completion as far as I am concerned.

A problem was found and I am hopefully going to benefit from the results very soon.

This scheme was run by DeNDRoN, The Dementias and Neurodegenerative Diseases Research Network, which is UK based although my own research was done by the North East Regional network.

DeNDRoN have regional newsletter which can be read at the following address.

Please consider the fact that this research is very important to all,  as you are helping others who follow us in the future.

Have a look at what we are doing and if you are interested, and live near one of our centres, then why not register with us.

Its not all work its very interesting and you meet new friends

If you are thinking about it, THEN GO FOR IT


Friday, 13 September 2013

Horses Mouth Mentoring

When I was told about Horses Mouth, I really did not know what it was, nor did I understand what it was trying to achieve, however it soon became part of my life and found that as someone with this illness, I could reach out and help others whether they had dementia, were carers, or family members or friends.

I had been asked to do this originally by contacts within the Department of Health in London, because they thought I had the right manner and was fairly careful about what I did and said, so it was an honour to give it a go, not expecting it to get as far as it did

I have helped quite a few people and feel as if I have gained many new friends along the way.

 This is an independent and as far as I know its an International website, where people can go for impartial advice about an illness, or problem at work etc, and no matter what the problem is there is always someone there to support you day or night, although I might add that I am not.

Most of those on this website have experience in one form or another, and although dementia is a big topic, we always try to help, but never give medical advice.

The main problem is that although there are around 12 different types of dementia, there are over 120 variations of the illness and each person goes through the illness in vastly different ways with different signs and symptoms, so we are all individual in our own way.

Many people think that because they know one person with dementia, that they know everything there is to know about the illness, but this is far from the truth.

I feel that it is sometimes a very good thing to have somewhere like Horses Mouth, because when we get diagnosed with the illness such as dementia you feel totally numb for a while, then after a while when it has sunk in, the questions come but there is usually nowhere to go for the answers.
 I say this because many have said that they start to think of questions at night, when the help desks have closed down

This is where websites like Horses Mouth come into their own, as there are people there most of the time, and quite a few either have the illness or have someone in the family who has it.

The main problem I have come across is caused by the stigma in dementia, and some will not accept that they have the illness or that there is something wrong with them  
People in this case will not go to charities where someone may know them, so they go online and ask the questions. They are usually pointed towards the correct charity, in the end.
I will point out that no one knows who I am, or anything else, and contacts are not allowed, just in case something goes wrong, or we get too involved, and  I only give advice after thinking it through carefully
I will point out that I only do this on the days when I can think slowly and carefully, and nearly everyone in the end goes to the correct place whether it is there doctors, or a charity where they can get all of the help and support they really want, and once that happens I have achieved my goal.

I have had experience of being in a post like this for a leading charity, and really enjoyed doing it.
I also believe that many people could enjoy the experience of mentoring and supporting others in their in their time of need, and when it works well you really get a buzz and a sense of achievement, “A Job Well Done”.

So I can recommend it to anyone who wants to become a mentor, and help others through a difficult time, while helping yourself in the process.



An amazing day for relection of the past

Last year I had been struggling with lack of sleep, and decided to do something different as my wife was away for a few days, so I got a bus to Newcastle upon Tyne, and had a walk along the river side.

I then had an amazing day walking along the banks of the River Tyne, a place where I worked for a few years in the 1960s, yet all of the places in my memories have gone.

The factory I worked in, the wharfs on the quay side and the flour mills have all since gone, one of the Flour mills is now that Baltic Art Gallery, a big change and even the Tyne Tees Television Studios had disappeared, so it seemed hard to think it was still the same place.

Years ago I would walk along the city road towards Byker, and then on to the factory overlooking the river, a place which held many happy memories, where we would spend time spotting the different ships of the line which were visiting the Tyne to offload their goods from around the world.

Yet all of this was gone but I looked back, and saw what was left in places, and how it had changed in others. Places where wharfs had been where now bars or Restaurants or in some places office blocks.

There are ok cause many more bridges than there were in those days, and  I was going to attempt to see them all knowing  full well that I would pay for this the next day.

When I worked there the wharfs were very busy places and it looked like an ants nest with all of the dock workers, now its all gone.

But all did not go as expected, because my brother met up with me after Lunch and we had a long drive around the other areas of the Tyne and Wear where everything had changed since the 1960s

This had been an added bonus as we had a long chat, and discussed how things were back in those days from what I remembered to what there was now.

We saw the places where all of the big shipyards had been, now all gone, and the only place which seemed to be busy was Tyne Dock and the Sea Terminal where the large ferries ply their trade to Amsterdam, and other European countries.

In many ways it was a time of reflection, as its not often that we have enough time to go over things like this, and to be honest its not everyday that I feel up to doing it, but my brain was in overdrive so I went with it, and I really enjoyed the day.

The high point was seeing the Millenium Bridge open at lunchtime something I have seen on television but never in reality.

My brother had been a Chaplin to the Swan Hunters Ship Yards, so he was able to fill in the gaps where I had forgotten things, so all in all in was a day to remember.

The Bridge Closed for River traffic

The bridge open

Amazing sight

Wednesday, 11 September 2013

Let us remove the stigma in dementia for ever

There is a lot of talk about the stigma of Dementia, and I think I would like to explore it. It’s taken a long time to write this but here goes.

 When I look at all of this I am not sure whether stigma is the right word, I rather think that it should be more like discriminated against, just like third class citizens.

 When we consider that 40years ago cancer was still a dirty word which was stigmatised, and people who had it were treated as if they had a dirty sexual disease, something we know it was not, and thankfully this has now changed.

Dementia on the other hand was always treated in many places as madness and I do not think it has changed to day in a lot of places. But this is due to lack of understanding by the general public and lack of leadership by the government and some of the medical profession.

 I know that some in the Government circles are changing things because a few years ago I was honoured to be asked to speak at the Launch of the New Cross party group on dementia, and since then the group has grown and has some impact.

  When I look back, I can remember the stories of people with dementia being locked up in mental hospitals etc., because they knew very little about the illness and thought the wrong things. These poor people who have this horrendous illness are the victims and are treated like old day lepers by Society.

The stigma attached to this illness is unreal and unacceptable in this day and age, as we are dealing with an illness which is not self inflicted or asked for and yet it seems that some of today’s society treat us as if we had an infectious disease.

 Many people I have spoken to have this weird assumption that dementia is contagious, or easy to catch, when we know that it’s not. There are many misconceptions about dementia, as many think that you become illiterate or irresponsible once you are diagnosed.

Many think that it runs in families, which it does not, and as far as I am aware no one in our family ever had dementia

Like many I lost many friends when I was diagnosed, as many have these ideas that once you have been diagnosed you go down-hill fast, and or forget who you are talking to etc.

 Even now we have nieghbour’s, who if they see my wife and I at the shops, will often ask her “how I am” when I am stood there, thinking hello I am here and not a ghost. Needless to say I steer clear of people like this as it hurts when this type of thing happens

I suppose many of the problems are caused by websites which say that once you have a diagnosis your life is down to 5-8 years, when in fact through modern medication which has been proved to help, life is that much longer, so these places need to be upgraded.

 Someone I class as a dear friend in New Zealand, was diagnosed in 1993 and was given more or less 5 years, yet she is still going and is still travelling the world spreading the word and raising awareness, so that must prove something even though her x-rays and scans prove otherwise, as they show up, what is left of the deteriorated brain, yet she is going still and god willing she will last a lot longer.

 So with luck all of these websites will change for the best thereby helping us

We need to re-educate the nation about the illness, so that everyone knows that we are normal people, who had the misfortune to get an illness which closes the brain down.

Once we have achieved this people who have Dementia will start to admit that they have it, and talk about it rather than try to hide it.

I was once told that I was a fool by admitting that I had this illness, but why if we don’t talk about it we will never remove that stigma

 We also need to get better services in England so that we get the same treatment and services in all parts of the country and not as we see it today where it’s a post code lottery.

Care homes are now getting so expensive that our carers are now expected to look after us at home with little or no help from the government services.

 We are left to support from charities, who have been short changed the by government as well and now, and find it increasingly difficult to find funds to keep going.

Not only that, but the people who look after us, and care for us are treated with little or no respect by the government.

 It’s all well and good for Government ministers to say that Carers save the economy millions a year, but they get little if any thanks after that, and some get very little support from social services when they need it as they seem to go deaf.

Perhaps it would be different if they themselves had a family member who had or has dementia then they would respond faster

Sadly now people who self inflict are more liable to get better treatment than those who are inflicted with a brain disorder such as Alzheimer’s or Dementia.

 The costs of smoking and drink problems are something which is on the rise at a rapid rate and yet little is done to stop it.

The NHS is in dire straits these days and unless the self-inflicted problems are brought under control, illnesses like cancer and dementia will have their services cut back in the future, something which would be very sad and would have totally the wrong effect.

But we can change this if we all work together and should do so in the hope that this stigma goes one way or another.

 We should if we can go out and speak to those who are young and ready to take this illness on board, whether it is schools, although teachers refuse to accept any one with the illness to talk to their pupils

But church groups, students, doctors if they really are interested, and any other groups where raising awareness can really do some good.

I went to speak to a group of doctors once and left feeling that it was a total waste of time, as very few were interested and those were from Far East countries, the British doctors did not want to listen at all.

  I have offered and have spoken to many groups nationwide, and they enjoyed to talks and presentations given because they were genuine.

All we ask at time is for the travel expenses, which can be expensive on long journeys

It’s not a job to us it’s simply raising awareness.

If you look at websites like Face book these days, places where years ago, I would have said was geeks, and are now the places for illness like dementia. They do a lot of good work raising awareness and allowing groups to speak out.

These children are sometimes too nervous to go to a charity, but on face book they are anonymous, and they don’t have to face anyone, they are simply there because someone in the family has got dementia, and they want desperately to get involved and help out.

 Years ago their parents would have kept quiet about the illness and the children would never have heard anything about it, so these are some of the people we need to target, as they are the future where dementia is concerned, and they can help us to spread the word

I have heard it said many times that it hits the right cord and place when a presentation or talk is done by someone with the illness, rather than a professional, although some world argue the true professionals are those living with dementia,

So let us use these people with dementia and raise awareness while at the same time removing this horrible stigma once and for all. 
If you really want to know what life is like having and living with this illness, ask them and not someone else, don't assume that you know all of the answers.

Let us all spread the word and raise awareness of this illness and remove the stigma, so that it becomes a nasty word from the past and is no longer used

Monday, 9 September 2013

Holiday in Turkey

Today my wife said she wanted  to get away for a holiday as we are both very tired.

So we have booked up and are preparing for the holiday of a life time with a visit to Turkey early next month. This is a place we have always wanted to go to as it has so much history, and its where the East meets the West so to speak.

We both love anything to do with history rather than being beach dwellers, something I cannot do anywhere, so its something to look forward to all being well.

I thought that the insurance company would stop me going with my dementia, but they seem happy to allow me to go, so now its all down to planning what we want to see while we are there.

My wife is a bit fussy with her food but these days I will eat anything that's going including spicy foods, so that again will be interesting, as I don't eat English food while we away, if I can help it at all.
It would be interesting to see how the Turkish people see dementia while we are there, but there again it depends on whether we see anything which points us in the right direction.

Here's hoping 

Friday, 6 September 2013

Do not distrurb as I am Concentrating

I often wonder why it is that when I am concentrating on getting something done, I can always guarantee that someone will stop me doing the work by asking a question, usually something either totally stupid or nothing at all to do with me.

These days it takes a lot to concentrate on everything I do, so it is hard, when something or someone breaks this concentration, and once it has been broken it takes a long time to start all over again.

I personally find this sort of thing to be very frustrating and annoying, because it is usually done by someone who should know better.

I can accept that some people may forget at times that we have these problems, but there are times when it does not make it any easier, and its very difficult to try to keep quiet, let alone tell them to disappear and leave you alone.

Children seem to sense that you are concentrating and tend to steer clear, where adults jump straight in with both feet, and give you a strange look when you get annoyed, because you have forgotten what you were writing or trying to say.

It never bothered me when this happened before but I suppose its getting harder and harder to concentrate these days, and even harder to remember what I am trying to write or say.

Perhaps I need a big sign on my back or above me saying,


Then I guess others would get upset and think I am simply being rude

Thursday, 5 September 2013

Alzheimer's Talking Point

Alzheimer’s Society Talking Point
Many dementia charities have a chat room or discuss point where people can go with their problems whether they have the illness, or are caring for someone with the illness, we are all going on this journey together, and by sharing the information we are helping each other out.

    A few years ago the Alzheimer’s Society set up a web page /chat room called talking point, where people with dementia, carers or family members, could go for advice, or just to discuss daily problems, and share information.

 Since then it has really taken off and now has more sections to cover most aspects of the illness.

These pages are moderated by volunteer moderators, from all aspects of the illness, and they also come from various parts of the world, so there is a wealth of experience.

Many people come here on a night after they have been given a diagnosis, because as we all know that it’s after we leave the hospital or the doctors that the questions start to come, by which time the hospital department has closed and there is no one to talk to.

 As well as the serious side there are also sections where people can learn about the news from the Alzheimer’s Society, or they can go to the tea room and do things like telling funny stories or tell jokes.  

We may have this horrible illness but many of us still have a sense of humour, and that is good.

 Anyone can become a member of talking point, no matter where they live in the world simply by registering, and all are made welcome.

 So if you need somewhere to go and discuss a certain problem concerning dementia, please go to talking point as it is in operation 24/7 and no matter what time you log in, you will find a friendly person at the end.

 Sometimes people with dementia go there when like me they have problems sleeping, or carers who are having a rough night with a loved one.

 I was a volunteer moderator myself for a short period, but gave up as I was struggling with eyesight problems, and did not want to make a mistake by giving the wrong advice.

However I really enjoyed doing the job and would recommend it to anyone, who has time to spare and who also wants to do something really good, while helping themselves and others with this difficult illness.

 The link to this website is at the bottom of the page 

The society also produces a vast array of fact sheets which cover most aspects of dementia, and are very informative, and well worth reading.

                                Get Support Sections

    1. I have dementia
    2. I have a partner with dementia
    3. I care for a person with dementia
    4. Younger people with dementia and their carers
    5. Lesbian and gay people with dementia and their carers
    6. Memory concerns and seeking a diagnosis
    7. Recently diagnosed with dementia
    8. Mid-stages of dementia: support and care
    9. Later stages of dementia and end of life
    10. After dementia — dealing with loss

Other headings which many find extremely helpful

3.     Helpful websites

Random groups within Talking Point
Bottom of Form

Gardening tips and advice

Can anyone recommend a tree

Lets have a discussion

Word games

Word association

Baking, recipes, tips from a professional

Gardening our hobby until Alzheimers stole my husband


Life Stories

Writing about ones life

Ideas needed


Don’t know


User involvement Advisory Group

Struggling with the lose of loved ones from Alzheimer’s

Northern Island based carers and their loved ones in care

Religion – how different religions deal with dementia

Nursing homes “widows and widowers”

Forget about Alzheimer’s by engaging with your favorite art form

 Link to the website

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...