Showing posts from June, 2013

Mah-jong and early onset dementia

I have tried many brain training games since my diagnosis of Lewy Body Dementia, but the one which seems to keep me focused the most is Mah-jong.
I originally picked this up from one of my Granddaughters who has a border form of Asperger’s syndrome and she was so focused on doing this that I thought I had to try doing it. She actually spent time sitting next to me showing me what to do, which was fine till I tried to do it on my own.
I have now become accustomed to it and enjoy doing it most nights after tea instead of switching off for the night.
It is good for many reasons but I do think that once you realise it is pairing things up it becomes easier to fathom and can become addictive if you are not careful.
I had lost some of my brain training games when we were flooded at home last year, and could not find replacements, but this has helped me, and to be honest it is better than sitting in front of the television as it all seems to be rubbish these days and the BBC news is not inspirin…

Surge in 'digital dementia'

Taken from this weeks news I knew that we were becoming more reliant on assistive technology, but this is quite frightening. Doctors in South Korea are reporting a surge in "digital dementia" among young people who have become so reliant on electronic devices that they can no longer remember everyday details like their phone numbers. Doctors in South Korea are reporting a surge in "digital dementia" among young people who have become so reliant on electronic devices

 South Korea  is one of the most digitally connected nations in the world and the problem of internet addiction among both adults and children was recognised as far back as the late 1990s. That is now developing into the early onset of digital dementia – a term coined in South Korea – meaning a deterioration in cognitive abilities that is more commonly seen in people who have suffered a head injury or psychiatric illness.
"Over-use of smartphones and game devices hampers the balanced d…

Better day

I have just had my first good nights sleep for around two months, without any horrible dreams or nightmares.

Although I am still feeling very tired, I do feel better in myself after a good nights sleep, and feel like I have had a bonus.

I will probably be back to normal again tonight, but as the saying goes, That's life.

Dementia is a cruel illness,

I have just read an article about the mind or brain playing tricks with us when we have dementia, and there are times when I confess that I really hate the illness.

I have problems with horrific and very vivid dreams and nightmares at nights, and sometimes end up getting out of bed, and then I sit in either a room downstairs, or in the bathroom till I think its safe to go back to bed. The problem then starts, what is still the dream and what is reality as I can not always work it out, as one seems to merge into the other.

I have seen things which I know are not there are times  after these bad dreams and nightmares, and it gets to the stage at times when  I just want it all to end, as these horrors of the night as they seem to go on for ever and there is no getting away from them.

I know that we all have nightmares and bad dreams, but these things have now taken on a roll of their own. Most people have a bad dream and then its gone, where these ones I have are so vivid that I can sit dow…


I often wonder how carers cope with their unexpected role of being a full time carer for someone with dementia or any neurological illness.

Those of us who are married all went through the marriage vows etc, in sickness and in health, but nothing prepares you for what is to come like dementia.

Its a job they are untrained to do, as everyone goes down this route with different experiences, vastly different symptoms and problems. We are all totally different and no two people with any form of dementia are the same.

I personally don't think anyone could train you how to do the job, as its all down to the individual and their symptoms and problems, and no one size fits all.

Its a bit like trying to train a nurse or social worker to look after someone with the illness, where do you start, there is so much to take on board, then you need to change it all with the next patient who is totally different.

I often talk to trainee nurses etc about my Lewy Body Dementia, but as with all demen…

Symptoms and Diagnosis of Lewy Body Dementia

Each case of dementia with Lewy bodies (DLB) is as individual as the person who suffers from it. Different people will show different combinations of symptoms. At present a diagnosis of DLB can only be confirmed by autopsy but a careful clinical evaluation of the patient and his or her symptoms can, in many cases, form the basis for making a reasonably confident lifetime diagnosis. The symptoms of DLB can be grouped as central, core, suggestive or supportive [1]. The central symptom of dementia with Lewy bodies is dementia , or progressive mental decline serious enough to interfere with normal daily activities. Significant memory loss may not develop until later. There may also be problems with attention, problem solving and spatial awareness. This can easily be mistaken for Alzheimer's disease or for Parkinson's disease (PD) with dementia. Core symptoms: Dementia along with the existence of one of the core symptoms listed below can lead to a diagnosis of possible DLB. Two o…

GENERATIONS came together to give a home a new look

GENERATIONS came together to give a home which cares for people with dementia a new look with a nostalgic twist.

Students from Seaham School of Technology worked with the Cedar Court Care Home in Portland Avenue in the town after its bosses decided the elderly mentally infirm (EMI) unit it runs for 12 residents needed to be updated.

Images of the town’s harbour, a painting of a woman and girl in a poppy field and mining banners feature in the murals created by the nine Year 10 pupils.

A poem by staff member Elaine Hargrave about dementia will also be painted on to a wall.
Before the artwork was created, leaders from the home visited Seaham School to discuss the plans and the issues and illnesses its residents face with the children and their teachers.

Caroline Cook, the home’s activities co-ordinator, said: “I was looking for new fresh ideas for the EMI, and I thought about making it more colourful and something a bit different and thought some art and murals would look really good.


New website at Alzheimers Rsearch UK

British charity Alzheimer's Research UK has launched a website giving families of people living with dementia information on new research and treatments for Alzheimer's and related diseases.

The site – The Lab – takes the form of a virtual laboratory and hospital, a 3D environment offering text, slideshows and videos about how research is funded, clinical research and new treatments.

Visitors to the site are able to sign in using their Facebook details, although it's not a requirement. Those that sign in will also see friends' profile photos in the site's intro film, and can post a pledge of their support for dementia research on their Facebook walls from within the site.

"We felt there was a bit of a gap in trying to get public information about the research process itself. Dementia research turns up in the media with varying levels of accuracy in how some of those studies are presented," says Tim Parry, the charity's head of communications and publ…

Problems with my eyes

I have not done very much with the blog recently as I have been struggling with my eyesight.

I have had double vision problems and need to see a specialist next month, so they can decide whether its  down to my dementia or something totally different.

I got involved with a project looking into eyesight problems in people with dementia, and they decided to send me on to the eye hospital for more tests, to see what my problem is and what's causing it.

I have been to London for a meeting on the Dementia Action Alliance, and had to make sure that I did not stand too close to people, otherwise I am straining to look at the "right face" in front of me as I see two, and that is very off putting to say the least.

So if I went cross eyed this week I apologise to those people who were at the meeting, because it was well out of my control

This was also stopping my reading as it becomes very difficult top read unless I sit with one eye permanently shut

Its bad enough trying to spea…

17-21 June - Falls Awareness Week

17-21 June - Falls Awareness Week

This week is the annual Falls Awareness Week co-ordinated by Age UK.

Repeated falls are common for people with Lewy body dementias (LBDs), either dementia with Lewy bodies or Parkinson's dementia. Falling can be a very early symptom of dementia with Lewy bodies (DLB) and may occur with or without trigger. It can be related to parkinsonism (e.g. slow movement, rigidity and problems walking), cognitive fluctuations, or to ‘blood rushes’ or ‘dizzy spells’ (orthostatic hypotension) seen in 3-5 out of 10 people with DLB;

Around half of all people with DLB will experience 'freezing' while they are moving, They stop suddenly for no external reason and can feel as though their feet are stuck to the floor or that they can’t move easily, which can make them feel unsteady and puts them at risk of falling. 'Freezing' can last for a few seconds or minutes.

Parkinson's UK's fact sheet on Falls goes into more details about the link bet…

Guidlines for being interviewed by the press

Press comfort
Make people feel at home without any distractions
Noise causes us problems when thinking
Speak directly to us
Don't ask a question, and then answer for us as its disrespectful, but allow us enough time to think things through.
Never rush the questions as the wrong answer may come out.
Make sure that the person asking the question does so in a calm and sensitive nature, and does not speak loudly or shout.
Do not walk round in front of us
Have comfortable chairs and sit in an area, where we can see each other without having to look in front of others, preferably facing each other
Have plenty of breaks and do not run on too long as it can be tiring
Explain the process very carefully so that it’s understood and don’t use technical jargon or bi words.
Never have a camera right in front of someone’s face.
There must be a way of stopping the process if we are unsure about the questions, or have made a mistake in the way we answered
If possible do a trial run first so, that we can see …

The lessons Japan has for the UK on dementia

In the papers this week The lessons Japan has for the UK on dementiainShare1
Japan introduced a compulsory long-term care insurance system in 2000 to help cope with its ageing population. Jeremy Hunt's recent visit to Japan passed almost unnoticed in Britain. Yet the issues he discussed with Shinzo Abe, the Japanese prime minister, and the health minister, Norihisa Tamura, touched on a problem that is likely to dominate social policy in the next decade: dementia care.

One in four of the Japanese population is over 65. By 2050, the proportion will be 40%. There are already 4.6 million people with dementia in Japan. Britain, with 10 million people over 65, has 800,000 people living with dementia, at an annual direct cost to the Treasury of more than £10.2bn pounds. By 2050, Britain is expected to have around 1.7 million dementia sufferers.

Not surprisingly, the condition has been a prominent concern to past and current policymakers. In 2009, the Labour government unveiled an ambiti…

Mystery benefactor and hard work leads to first year success for dementia charity fundraisers

Mystery benefactor and hard work leads to first year success for dementia charity fundraisers  The determination of a group of local fundraisers and the generosity of a mystery benefactor has seen £60,000 raised for Dementia UK in just a year and has led to the recruitment of two specialist nurses who will support those suffering from the condition and their carers.

Dementia UK Cornwall celebrated its first anniversary this week and shared the news that the two new Admiral Nurses should be in post in Cornwall by the end of the summer.

The Cornish support group was set up by Shirley Barnicoat and her daughter Lisa Dann following the death of her husband, Paul, in January of last year. “He had been suffering from dementia for several years and we thought we would try and get an Admiral Nurse in Cornwall,” said Shirley.

We asked how it could be done and were told we’d have to raise £60,000. We were all determined, and with some really good helpers we have raised £30,000 in the first y…