Where is everyone?

Discussion in 'I have dementia' started by Richard and Fin, May 9, 2019.

  1. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    126
    Male
    Alvechurch
    These are statistics I have just read on AS Site:

    There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. This will soar to 2 million by 2051.

    225,000 will develop dementia this year, that’s one every three minutes.

    1 in 6 people over the age of 80 have dementia.

    70 per cent of people in care homes have dementia or severe memory problems.

    There are over 40,000 people under 65 with dementia in the UK.

    More than 25,000 people from black, Asian and minority ethnic groups in the UK are affected.

    I thought everyone would be like me when diagnosed, would be running around trying to find out all the information, help and advice that was out there.... grasping for hope... but I'm not sure they are... so why not?

    I noticed that there are less than 59.000 registered here... this is a large number, but is this an accumulative number, the number of people that have registered since AS site was set up? How many active members are there?

    I also noticed Robots outnumbering the forum than members at this time, but what do these do? I've added a snapshot of this.
     

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  2. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,879
    Suffolk
    Hi Richard.
    I believe robots scurry around looking for things they can put on a list, so when one searches for ‘dementia’ for instance, the reference will come up.

    Do realise that many people with dementia don’t want to know! Others, including my late OH couldn’t use anything electronic from before he was diagnosed. Not even to switch a radio on. He was still interested in many things, but not computers, though he used to programme them as part of his job. Seems to be the luck of the draw, or, as he had vascular and Alzheimers, where the tia occurred!

    I do read your posts, though this is the first time I have replied ( which goes some way to answering a previous question of yours!).

    Give Finn a cuddle for me!
     
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,773
    N Ireland
    Hello @Richard and Fin, I think that's a simple question with a complex answer.

    At diagnosis my wife was one of the '40,000' early onset group. We have yet to meet another member of that group, although I have seen a few on the forum.

    You seem to be a highly motivated person. My wife is one of the many people with dementia who suffer the common bedfellows of anxiety, apathy and depression.. I struggle to get my wife to do anything as she just wants to sit watching quiz shows and eating sweet food. Indeed, these aspects of my wife's condition cause me more angst than her dementia(bad enough as that is!).

    Through no fault of their own, I think too many people with dementia fall in to the same category as my wife. If I discuss this issue with my wife she will agree with everything I say and promise to make an effort to help herself, only to forget the conversation within seconds.

    I too am one who reads your posts. Indeed, I hold you up as an example to my wife when those dreaded bedfellows of her dementia control her thoughts and she starts asking when she will die and when will her dementia get worse. I don't encourage my wife to use the forum because she is the type that would sit and cry all day as she would see every bad detail in her own future instead of being motivated to see this as being forewarned, and therefore forearmed, as you do. I stick to showing her posts that carry a 'hopeful' message.

    It's such a shame.
     
  4. Just me

    Just me Registered User

    Nov 17, 2013
    74
    What are robots? Sounds slightly sinister on a site like this
     
  5. canary

    canary Registered User

    Feb 25, 2014
    9,660
    Female
    South coast
    The robots are just looking at the public posts so that if you search for something dementia related using. for example, google or bing, then the search will find things that have been posted here.
     
  6. Just me

    Just me Registered User

    Nov 17, 2013
    74
    Thank you Canary.
     
  7. nitram

    nitram Registered User

    Apr 6, 2011
    18,615
    Male
    North Manchester
    #7 nitram, May 9, 2019
    Last edited: May 9, 2019
    It's worth noting the number of non members viewing at any one time, these will be people looking for general or specific information who feel unable, or don't want, to join and post with comments or questions. Many of these will have arrived on TP following internet searches and seeing TP posts, note that the members's only area 'tea room' is not accessible to robots (bots) and therefore had a degree of privacy.

    Bots are stand alone computers that perform tasks far quicker than humans, on the web they accounts for ~50% of all traffic, as mentioned they collect information for search engines.

    There are specific types of bots, e.g adbots that collect
    advertising material and then display in on users' screens according to knowledge about the user, socbots that post on social media sites to promote a certain point of view.
    The socbots come up against CAPTCHAs (Completely Automated Public Turing test to tell Computers and Humans Apart) a 'challenge–response' test to determine whether or not the user is human.

    Up till just under 2 years ago when TP changed software 'active users' was displayed, from memory it was in the low hundreds and based on numbers of posts in a defined time frame.
     
  8. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    304
    Female
    High Peak
    Don't worry - Yoshimi is dealing with them :D

    (Google/Youtube Flaming Lips, Yoshimi)
     
  9. Just me

    Just me Registered User

    Nov 17, 2013
    74
  10. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    126
    Male
    Alvechurch
    Morning all...

    Spamer... I think you are right about people and computers, but I suppose as time moves on, more and more will be coming here that are computer savvy? As a teacher starting in the 80's, I was just in the start of this then, new revolution. It changes so much and so fast, it's hard for anyone to keep up.

    I would like to see a move away from the idea of knowing all about computers, how they work and all the ins and outs of it. Computer technology is just like a car, you don't need to know what goes on under the bonnet to drive. I would like to see a move to helping people, especially us, using technology in an easy, friendly and intuitive manner. It can be done I'm sure!

    These assistance now like Alexa, and Google Assist and Apple's Siri are all the rage, but there not there yet.. to much one way... you have to ask the questions... it lacks something... I want an Al for the film 2001 a Space Oddity.... 2001 how far out were they!?

    I'm 65... do you think people are older here and maybe that has something to do with the lack of people using computer technology and getting involved here?

    It takes effort to get involved and sometimes it just doesn't seem worth it. It helps me keep awake! :)

    Gave Finn hug... says thanks... he doesn't actually speak.. that would mean I mental!?o_O


    Hi KaraokePete... I am motivated... I'm motivated to beat this or try for as long as I can. However, I do have bad dark days, think we all do and the anxiety, apathy and depression try to take hold, that is when the battle starts.

    I suppose I have alway been positive. As an example, I think the majority of people in the World a good and caring. It's the news, which forever seems bad, continually highlights the minority of scum that blight the planet.

    You describe how your wife now likes to just sit and watch telly and chill in her own space, but did she prefer to do this before this started setting in? Finding things that make us want us to get up and go... seem to far away and too much effort... why bother when I can just...
    It can be many things that make people prefer this and it doesn't have to be dementia. Most people find tv their first form of escapism.... that is why more programs are produced that just pacify the viewer. I think tv is a control system.... do you remember, George Orwell's 1984 and Big Brother... not the tv program :confused:

    I find myself slipping into the sedentary live sometimes and dementia doesn't help, but I have to try and find things that I want to do that gives me a bit more. For you, and many many others, trying to find that thing to help keep your loved ones engaged with life and with you, I can not imagine the frustration. Maybe it easier and better just to go along with it... what do I know!

    So back to the point of Robots in the system.... Ok we all know they are there and what they are doing, but adding them to the, Members Online Now box....come on! :rolleyes: Do they have names... Albot, RobBot, RupBot, :D and why are there more scurrying around today!?
     
  11. canary

    canary Registered User

    Feb 25, 2014
    9,660
    Female
    South coast
    I think that is very likely. 65 is considered young for dementia - most people are in their 80s. My mum was in her 90s and had never owned a computer.
     
  12. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    304
    Female
    High Peak
    My mum, who worked in admin all her adult life, got a home pc more than 25 years ago. We set it up, showed her the basics then off she went. She could email, send photos, researched her family tree a bit, played games every day and regularly shopped online as well as doing some of her banking.

    But gradually, all her knowledge just faded away. She started to struggle with emails and would type her message in the title bar, couldn't find ones I'd sent her or view attachments, things like that. Then came the period when she was always having to 'get the computer lady' to fix her pc. She started saying strange things like 'I don't have the internet anymore, she took it off.' She no longer understood the difference between online and offline or what a browser was. She phoned me one day to say she'd had a row with Tesco because she couldn't sign in to order her groceries. The story I got was long and complicated but it was clear she was doing something bizarre and that her understanding of how the whole thing worked had just 'gone'. Her last few emails to me were unpunctuated streams of consciousness, complete with bad grammar, spelling errors, etc. - not like the 'old' mum at all!

    During this time she also had 3 new Sky boxes because they 'didn't work', a new washer because hers was broken, (she later admitted that was because she'd turned it off at the plug and forgotten, but was too embarassed to cancel the new one), 2 new microwaves (she claimed the one that blew up was faulty...) and umpteen new phones which she would lose, switch off, fail to charge or just not be able to understand.

    This was about 3 or 4 years ago (mum is 87 now) and I'd say her 'tech decline' occurred over a period of about a year, possibly a bit more. She was undiagnosed at this time and although all the warning lights were flashing for me, the rest of the family was in complete denial so I just had to wait till things got Bad. (Which, unfortunately, they did.)

    I do think modern tech is easier to operate, as you say, so maybe as our generation ages we will retain more skills for longer. Touch screens are very intuitive - which is why children find them so easy! Personally I'm a bit of a dinosaur - I don't like trying to do things on a smart phone as it is annoying and fiddly. (And everything is cut down/dumbed down.) But then, I sit in front of a proper pc all day with a nice big monitor :)

    There seem to be quite a few PWD on Talking Point who still get a lot of pleasure from tech - tablets seem popular even with those who have lost other skills.
     
  13. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,773
    N Ireland
    Hello again @Richard and Fin, thanks for the reply.

    At the time of diagnosis my wife was, like you, early onset and she is now 65. We met when she was 50 and I was 49.

    To give you some idea of her prowess pre dementia, we got engaged on top of a mountain(although I did have to drag, push and cajole her a bit on the second half of the climb! She didn't know I had a ring in my pocket and her powers of recovery were amazing when I went down on one knee and produced the ring). A lifetime ambition of hers was to obtain a degree and she started a course with the OU a couple of years before symptoms developed. However, even before the dementia symptoms became evident she was plagued by chronic depression and anxiety.

    I try the type of things you have advocated in your recent posts. We both like karaoke and we continue at that because it's the one time that I see my wife as she always was - it was Immanuel Kant, the 18th century German philosopher, who called music 'the quickening art', and I see that in my wife. The exercise is something that my wife now finds a struggle but she is currently trying to make an effort - I'm encouraging her as I don't want mobility issues to creep in because she is already starting to suffer falls.

    The OU was a different matter and the degree wasn't obtained. Indeed it was one of the things that first highlighted my wife's diminished cognitive skills. For a couple of years my wife scored 75-85% in assignments but then showed me a final assignment for year 3 and it was total garbage. I offered to tutor her for a resit and discovered that she couldn't follow a short list of instructions on what I thought she should do - I had to break a list with 5 points into five 1 point lists, but we got there. The following year I worked in collaboration with the OU and her on-line tutor and managed to tutor her to the point where the OU awarded a Dip HE, however, the tears we both shed to get her there were the death knell to her studies. Still, she got a designation and that made her proud for a few moments. Memory is now so poor that she doesn't recall much, if any, of it.

    My wife is often an underlying factor in the posts I write on the forum. Many members write about the fact that there loved one has 'gone' because of the dementia. I live with all the heartache of 24/7 caring for a spouse that I have seen fall from great heights of physical and academic ability. I endure troublesome behaviours, moods etc. I have taken on all the physical and financial chores of everyday life. However, I still see, underneath all that, the beautiful person my wife always was - even though she can, almost daily, drive me to distraction and leave me in tears.

    I have always been an active, glass half full type who sees the silver lining in every cloud. When my wife needs comfort and reassurance I always remind her that this is the type of person she has 'watching her back'. "Don't worry ….., I've got your back" is something I repeat every day.

    It's an emotional and physical roller coaster but I have a lot of stamina and always manage to drag myself, and my wife, out of the low points.

    Stay strong and keep posting.:)
     
  14. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,879
    Suffolk
    I think OH stopped working with computers when Quickbasic turned into something else. He couldn’t understand Windows, that’s for sure!
    He did an OU degree, and finished it well before diagnosis.i was very proud of him! He was fit, active, quizzed, crossworded. But unfortunately was a pipe smoker, which I assume led to vascular dementia.
    Love your story of getting engaged, Pete. I think ours was a mutual agreement! Which many of our decisions were!
    He was74 when diagnosed, nearly 83 when he died, but certainly had dementia for at least four years before diagnosis.. By the way, Richard, I’m older than you!

    I used to be OK with computers, now, I find everything so complicated, I can’t cope. Even ordinary phones are getting beyond me, though might have something to do with arthritic fingers!

    I’ve been trying to do paperwork, but phones aren’t answered, or we don’t allow payments vis the phone these days, or you can’t book over the phone until next week and other rubbish!

    Just getting old, I fear!
     
  15. AliceA

    AliceA Registered User

    May 27, 2016
    2,142
    I feel lost computer skill are more a matter of the illness than age, my husband converted a group of complex establishments from manual to computer systems in 1980s. Now in his late eighties he does not use one but enjoys using a tablet, he has favourite games.
    I myself first came into contact in 19 54/55, the computer took a large room, airlock doors to prevent dust and a bevy of highly trained well paid minders.
    I can still use computers more easily than many much younger.
    Some people can and some cannot what ever their age.
    I am not sure the modern ones are user friendly for older people, stiffer joints and poorer eyesight do not help.
    Adverts intrude where as The first was a real workhorse. I find somethings are gimmicky, especially when I just want to use it, pure and simple. I like deciding when I would off line or on line. Now the cost means WIFI is a cheaper option.

    Many members are not on here because they are busy caring, I come on check the posts but then try and do something else to stretch my brain or relax, sometimes this is the same thing. Some never post but get what they need.
    I call my iPad my second best friend I do everything on it from shopping, keeping in contact with people, doing courses and so much more. I think there is a case for a more simple one with easy folders to organise.
     
  16. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,346
    Female
    My mother is 84 (diagnosed about 5 years ago and now in a care home) and she never owned a computer/smart phone/tablet, she wouldn't have been able to deal with any of those things pre-dementia so you would never have seen her online. But actually she isn't the type of person who would have researched her Alzheimers anyway. She would have read any leaflets she was given, but that's about it - she did not have an enquiring mind.
     
  17. AliceA

    AliceA Registered User

    May 27, 2016
    2,142
    Yes, just the type of person so often.
     

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