1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Louise Lakey

    Louise Lakey Registered User

    Apr 19, 2007
    29
    Hello everyone,

    I'm a new member of talking point - I recently joined the Alzheimer's Society as policy officer - so it is great to meet you all.

    I'm currently updating the society's position on electronic tagging and technology to help with safer walking (or wandering). The current policy is available on our website but we are looking to develop this and understand the issues more fully.

    As you may have seen this morning, the possibility of using electronic tagging has been on the news. I see some people have already started discussing this, which is really great. I would really like to understand what carers and people with dementia feel about electronic tagging, so that I can use this to inform the new policy.

    If anyone has any comments on the current policy, or would like to share thoughts or personal experiences of electronic tagging with me, then it would be wonderful to hear from you.

    Also, the Jeremy Vine show on BBC Radio 2 is currently running a phone-in on electronic tagging. See the website here. You can email comments on the website or if you would like to phone in the number is 0500 288291

    Many thanks, Louise
     
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    My mother is normally good when I am around, but when I have to pop out , like this morning when I got back found the front door open , mind you mum was sitting on her bed when I got back , it does worry me , I know she was only looking out for me .

    I would just like to know just wondering how the tag works to let me know, Dose it alert me on my mobile or something
     
  3. Louise Lakey

    Louise Lakey Registered User

    Apr 19, 2007
    29
    Types of technology

    Hello Margarita,

    Thank you for your post.

    Just to explain that there are two types of technology that can be used.

    · Electronic tagging is used to alert carers to the fact that someone has moved outside a set broundary, but it doesn't tell you where the person is. This could be in the form of a bracelet, for example.

    · Tracking devices are used to locate a person. Using a Global Positioning System somebody can keep track of where exactly the person with dementia is.

    Hope this helps, Louise
     
  4. KenC

    KenC Registered User

    Mar 24, 2006
    913
    Co Durham
    #4 KenC, Apr 19, 2007
    Last edited: Apr 19, 2007
    Hi Louise,
    As a person whop has Dementia, I was recently on a seminar about the use of electronic tagging and found that like myself people who have the illness
    are not generally against this. There is a lot said about the loss of civil liberty, but I and many others feel that once you are diagnosed with this illness you loose all your civil liberty, because you never know what you are going to do next, what you have just done and sometimes you know where you are meant to be going but are never sure whether you will get there at all. Sometimes people with the illness are not able to do anything with out a carers support or help.
    I think that these gadgets do offer us a way of regaining our freedom, by giving us more confidence and a will to try to enjoy what is left of our lives. It also allows our carers a bit of freedom if it works to do other things. I admit that this has to be monitored carefully to stop others with ulterior motives from gaining anything from the use of these devises, but I think the use of them actually helps. We already have GSP systems on mobile phones which can track a person and I have nothing against that.
    When I go out I always pick up the same things that I know will help me if the wheels come off. These are:- My keys - My Alzheimer's Help Card - and My Mobile phone.

    I think some of the gadgets being discussed are very small and are not obvious to those who would try to use them for other purposes and therefore I really do not think we have anythink to worry about. I find that most of the people who are against the use of these things are people in the support services, ie Social Services and not people who have the illness or there carers or families.
    Providing it is all explained to us early on there is nothing wrong, but if it is put on someone who has no control and is in the later stages, then we need the consent of the family or the carers, not someone in the government or Social Services. As some one said to me recently, this will allow me to walk around unaided and that is what I want.

    We really do need all the support we can get and so do our carers, who have a rough time supporting us.

    Best Wishes

    Ken
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Louise

    Welcome to TP. I'm so glad that our experience and views are being canvassed in formulating AS policy.

    I think this is the crux of the matter. If the person with dementia is capable of understanding, and is agreeable to being tagged, then I can't see any objection.

    In my case, my husband is (I think) in the later stages, but is still physically fit. He likes to go for walks with the dog, and I'm glad he retains this small independence. But I do worry if he is away longer than usual.

    I think he would understand the significance of a tag, and would agree to it, but I would want the signal to be sent to me, not to some central control. As this would be for my benefit, I'd be prepared to pay for the technology (means tested, of course).

    I can also see the value for people in care homes who also like to walk, but the consent might be more difficult to obtain.

    I'm not sure how it would work with people who live alone, with carers who are some distance away. In this case the central control would be necessary, and this also implies that someone would be available to go and 'collect' the person if necessary.

    Tricky, but potentially valuable.
     
  6. Gill W

    Gill W Registered User

    Jan 31, 2007
    190
    Co. Durham
    Hi Louise,

    I read this piece of news this morning, and have to admit I was a bit two-way with my thoughts on the subject.

    My first reaction was: "wonderful, that's even better than the 'Watch Me' system I've been told about".

    My scond reaction was: "how the hell would we get Gran to agree to wearing anything remotely like that!? She never wears the pendant for the alarm system we have installed for her!".

    I can see that this would be a beneficial system, as Gran has recently started to wander, on the second occasion she got quite a distance from home, in fact further than she ever bothered to venture pre-diagnosis. Our problem is as Hazel says, we live 25 miles away from Gran and if we were alerted to her taking off on one of her jaunts, we'd be having to phone the police to try and intercept her because she could be even further afield by the time we get there. Are the police willing and indeed able to help in these situations? Is there enough cover within each force's area to be able to provide someone at short notice to collect the wanderers? Or would Social Services be given funding to have a control centre that would have 24/7 cover of everyone with the tags? And lets face it, there are a lot more people out there with dementia than we would care to shake a stick at.

    The concept is a good one, but funding and staffing may be the pitfalls here I think. Social Services did mention to my mum that there's "some sort of technology" that can be set up for Gran where they program it for 'normal' activity, and any activity outside of that 'normal' spectrum alerts someone somewhere. It was the 'someone' and the 'somewhere' that made us doubt the effectiveness of it.

    Gill
    xx
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,879
    Kent
    Hi Louise, Welcome on board.

    I`m really pleased you`re asking for the opinions of those who are experiencing the anxieties of Dementia.

    My husband has lost the confidence to go out by himself, unless he goes on tried and very well tested routes. He carries an identity slip with him, but has, on occasions, removed it from his wallet, when he has become more confused than usual.

    He does worry about getting lost when he`s out, or having an accident and being unable to get home. He also worries about forgetting his address. He is unable to use a mobile phone, he is even unable to answer a mobile phone, if I phone him.

    I don`t think he`d have any objetion to being `tagged`, as long as the tag was unobtrusive. I agree with Skye/Hazel, that if he were tagged, I would want the signal sent home, rather than to a centre. If a stranger approached him, it would only add to the confusion. If he were lost, he would want me to find him.

    Thanks again. I feel, by being able to give my point of view, I have some control in how my husband, and those like him, are to be helped.
     
  8. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Hi Loiuse and welcome to TP

    First off, I have to say my mother is not a wanderer: arthritis has made that impossible. However there was a time when I thought technology could help her live more independently, so these observations are based on my abortive attempts in that area.

    Are these things waterproof? One of the problems we had with basic panic alarms, either worn as a pendant or on the wrist is they had to be removed before bathing. This is so stupid: it meant they were removed and not replaced. Good grief: I have enough problems remembering to put my watch back on if I take it off - how much more difficult is it for a dementia sufferer.

    How comfortable are these things? And how bulky? my mother, like many others, can be very determined about removing things that impact her comfort. For her point of view, she can't remember why she's wearing whatever it is, so why should she keep it on?

    I see little point in a system that simply alerts if someone leaves a pre-defined area. These systems absolutely need to have a GPS component. There have been many cases of people wandering way from their homes, carers have known almost immediately they have gone, yet their bodies have eventually been found no more than a couple of hundred yards from their last known position, despite search efforts. Without GPS, you're left with carers, police and searchers running around like a bunch of chickens with their heads cut off. In fact, if you're not careful, such systems can induce a false sense of security, which I think is the real danger with any monitoring system.

    Jennifer
    (who has more thoughts on the subject but has to vacate the computer).
     
  9. Louise Lakey

    Louise Lakey Registered User

    Apr 19, 2007
    29
    Thank you everyone for your comments today. I am finding them invaluable and there are many important and interesting issues being raised. Do please keep them coming! :)
     
  10. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    Is this for just elderly or for the younger sufferers as well. As my husband (well did until this week in hospital) think he could go out on his own but i couldn't take the risk. He was very fit and active till he went into hospital.
     
  11. sue38

    sue38 Registered User

    Mar 6, 2007
    10,854
    Wigan, Lancs
    My Dad at 82 can walk for miles and frequently does. He doesn't have or need someone watching him 24 hours a day and regularly takes the dog for a walk or goes for a round of golf without telling anyone. He would bitterly resent anyone keeping tabs on him in this way as he thinks we have taken away enough of his independence already. Of course when my Mum gets home and finds him missing it's panic stations. Like Sylvia's husband he cannot use a mobile phone and would forget to take it anyway and doesn't think to leave a note - even if he could.

    I suppose it's a balance between his 'civil liberties', keeping him safe from harm, and also our peace of mind. I was interested to read Ken saying that he would welcome the idea of 'tagging'. The difference I suppose is that he recognises that he has dementia, whereas my Dad is in denial that there is anything at all wrong with him and it's the rest of us who have the problem.

    I do have a problem with the word 'tagging'. It conjures up images of criminals with great big devices round their legs.:eek:

    Sue
     
  12. bernie

    bernie Registered User

    Jul 28, 2005
    52
    south london
    #12 bernie, Apr 19, 2007
    Last edited: Apr 19, 2007
    I think it depends on how advanced an Alzheimer's sufferers dementia is.

    My mum used to be physically very fit but would not recognise her own road and own house at times.

    I used to look after my mum in evenings and at weekends with the day centre coming and collecting her in the morning.

    I had to leave her for 1/2 hour or so in the morning to go to work before the day centre would collect her.

    I remember getting phone calls at work from the social worker saying that mum was missing, then having to rush away from work to try and look for her.

    A lot of people probably don't realise what it's like to be looking after a wanderer, or how Alzheimer's develops.

    It is not just a question of wondering if somebody might have popped out to the shops. It can be a question of somebody leaving home and trying to find "home". Stopping cars in the street and asking total strangers to take them "home". In these cases I do not think even the most extreme Civil Libeterian could raise any objections.

    People with Alzheimer's will end up not being able to make an informed decision and as such would have to have a decision made for them.

    The tag would hopefully be discreet, but have to have a key to remove it.
     
  13. cath b

    cath b Registered User

    Apr 19, 2007
    3
    Leeds
    My father, who had dementia and died four years ago, got lost several times when out walking - once when he was visiting me, and several times after moving into a residential home and escaping (despite being very happy there).
    His first absence was for over 24 hours; he was found about ten miles away, having probably walked much further than this to get there. The longest length of time he was missing was three days; he was eventually found unconscious.
    I'm sure you can imagine going to bed at night (and the next night ... and the night after that ...) not knowing where the person you love is, or whether they are safe or even still alive. Rushing to the phone every time it rings, wondering if it will be bad news.
    Another elderly gentleman who walked out of a residential home in the same city as my dad, on the same day, was not so lucky - he was found dead the next day.
    Tagging may have shortened my dad's ordeal, and may have saved the second gentleman. So yes - I'm in favour! (respecting the fact that in some circumstances it may not be desirable)
     
  14. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    #14 jenniferpa, Apr 19, 2007
    Last edited: Apr 19, 2007
    Am I right in thinking that the Torbay trial isn't electronic tagging, but simply a bracelet with an ID code and a phone number? Similar to a medic alert bracelet? So. in effect, it relies on a well-disposed stranger to a) find the person b)realise they have dementia and c) call the number on the tag. All well and good in it's way, I suppose, but I can't see why anyone couldn't do this: have a bracelet engraved with the carers number. Although I can see this type of lo-tech solution as casuing a lot of problems: there are going to be a fair number of dementia sufferers who are going to resist having their arms examined for a bracelet by a stranger, because you know they're not going to remember that they are wearing it and why. And that's always presupposing that people think to look which is a pretty big supposition.

    Anyway, my views on tagging are as follows: it has to be lightwieight, comfortable, waterproof and not easily removable. As for consent, I think that a lot of dementia sufferers are competant enought to consent. The issue is since they may not remember that they have consented or why they're wearing it, it needs to be something sufficiently unobtrusive that it can be placed on the wrist and then forgotton about: I wear my watch all the time, in and out of the shower, and don't think about it unless I want to tell the time, and that's what the technology needs to aim for. I see no reason why it shouldn't be that small. In the US ( and maybe in the UK) you can get a cell phone for your child that has both GPS and a perimeter setting: the phone will text or call you on the "parent" phone if it leaves the perimeter, and you can track its location via a website. I personally would want this information going to the designated carer though, not some 24 hour call centre, because I don't have a great deal of confidence in someone else's ability to monitor my loved one.
     
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,879
    Kent
    Ideally, I would like my husband`s permission to use a tag and would only agree to it against his will if he became a wanderer and was at risk.
    I agree `tag` isn`t an acceptable term, as it is associated with ASBOs etc.
    Perhaps we should begin a new thread to think of a name ;)
     
  16. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Well my dog has an AVID microchip in her, and they're always referred to as AVID, even if it's made by a different company, so maybe it should be given whatever the name of the first company to develop an effective system.

    Alternatively, what about electronic ID (EID) for short?
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,879
    Kent
    We`d be having people fasting from surise to sunset with a name like that. ;)
     
  18. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    All right - I'll confess: I'm stupid! What???

    Jennifer
    PS. What about Locator?
     
  19. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    I have very mixed feelings on tagging.
    I wonder how it would affected by the new mental health act?
    It will also be interesting to see what comes out of the CSCI survey on restraint.
    All very complicated I think.
    Norman
     
  20. KenC

    KenC Registered User

    Mar 24, 2006
    913
    Co Durham
    Hi all,

    When this has been discussed at some events it was called assistive technology, and the term tagging was dropped as it infered someone who was being monitored by the Police.
    It was suggested however that people in the early and mid stages should be asked about whether they would object to wearing these things. The reason being that:-

    A) They should understand what the devises are for and who is monitoring them and why.

    B) If its worn early enough the person will get used to it and not try to remove it as they would in the later stages.

    But it was felt that it was up to the person with Dementia to say whether they would or would not wear it. But as with everything else it has to be monitored by a reliable and responsible body and not a profit making organisation.

    Best wishes

    Ken
     

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