Electronic Tagging

[jimbob]

Hi

Hi everyone I am recently joined, the reason I joined was that yesterday i saw a report on television re the use of tagging for people with memory loss, this struck a particular chord with me when ethical issues were mentioned, I am a professional in social care and have had the great pleasure of working with assistive technology for several years now, particularly with those with memory loss, the use of any technology including tagging (if thats what you want to call it)with any individual should be based on the individual circumstances of that person,that is that it (technology) is not a cure all for everyone and will not suit all situations.However I have seen many types of technology used to great effect particularly for individuals with memory loss and it has really helped the families. To my knowledge technology has and is being used in many different ways across the country including location services (these enable those who may be at risk of getting lost when out walking to be located by electronic means)but I would be interested in how many carers have come into contact with assistive technology and what the general feeling is about it, I must stress this for purely my personal interest.

 

[jimbob]

tagging

was pleased to read experiences of those who have used some kind of tagging device, the service i`m developing in my area includes a location service, it is very simple and cheap, all you need is a simple mobile phone, (we use £20 nokia ones) the phone is then registered via the internet with a commercial location service(these services of which there are several were initially aimed at parents of children for obvious reasons) once registered providing the person carries the phone with them (charged and switched on)you will be able to track them via the website, in my area we have set up a central point for carers to ring for a location as we realise that everyone does not have access to the internet or may not want to bother with it. Of course i realise that this is not going to work for everyone at risk, as with anything there is no one size fits all but we are finding it a valuable service for quite a lot of people. When i first started the service in my previous post and also in my present one there was lots of talk of ethics and isn`t it a bit big brotherish? my answer to those people is always the same, what is more controlling locking someone in their home, or a residential facility or allowing them to be as independant as possible while managing as many risks as possible? i know which i would prefer, there is lots of technology out there that can be used to manage risks, in 2006 every local authority was given a grant (Preventative Technology Grant) to help them introduce the above type of service along with other technology to help individuals and their carers, if its not happening in your area you need to ask why not?
Happy New year to all jimbob

 

[gigi]

There's a very good article in The Daily Telegraph today by Barbara Pointon..."Tagging means freedom-not the end of it"-if anyone's interested

 

[noelphobic]

here's a link to that article

http://www.telegraph.co.uk/global/m...V0?xml=/global/2007/12/31/noindex/htag131.xml

 

[gigi]

Thanks Brenda!
I knew someone would come up with a link!!!
Don't know how you do it!
Love Gigi x

 

[Tender Face]

Hi jimbob - I posted on this 'debate' way back when ..... and whilst always trying to remain open-minded about any means of 'assistance' to preserve as much as I can of my mother's independence (living alone)and seeing this type of technology as a possible means to achieving that, my reservations remain much the same.....

and it has really helped the families.

Is this the right focus? The purpose should surely be solely in the interests of the person who needs the assistance (I believe we are a long way yet from the type of thinking in the Children's Act that the 'child's interests' should always come first - and carers are a secondary consideration).

providing the person carries the phone with them

And herein lies to me the crux of the 'ethics' or the practicalities ..... how can you rely on a 'device' if the person needing it cannot be expected to remember to carry it with them - let alone where they might have left it last or even what it is for? The only way to ensure they are at all times in 'possession' is to 'tag' (ugh sorry - hate that phrase) ... they have no freedom of choice ...... or what ability to change their minds in more lucid moments? Are we not then denying them their rights to apply choice when they are able?

I have removed what 'assisted technology' mum had in her home as she failed to understand the purpose - it had been installed pre-dementia diagnosis (a 'Care on Call system' to deal with falls due to osteo-arthritis and a first hip replacement). Once dementia was clearly in play - she was frustrated the 'gadget' didn't ring her up to check how she was, refused to wear the necklace she needed to activate the alarm or generally hid it or misplaced it .... it caused far more anxiety than it could ever do good .....

Just my experience ..... and yes, I am trying to keep an open mind ........ I feel bad enough she carries a note of my contact details in her bag in case she gets lost on the rare occassions she feels able to wander further than the corner shop ... and has her house key (willingly) on a ribbon around her neck ..... it may be promoting independence but I can't help but feel it is demeaning to any self-confidence ...

When someone can convince me that tagging is not a substitute for adequate care and supervision (and I am not suggesting that is only provided by the primary carer but with support of professional services and a society which understands and meets the unique needs of dementia sufferers) I might sleep easier on the issue ...

Just my personal view but in so many walks of life we are keen to use technology simply because it is available - it does not necessarily mean because it is there it is the best solution. I'm an old-fashioned humanitarian techno-phobe at heart, I guess.

Karen

 

[noelphobic]

Thanks Brenda!
I knew someone would come up with a link!!!
Don't know how you do it!
Love Gigi x

it's easy when you know how!

Type 'Daily Telegraph' into your search engine of choice. The newspaper's website will probably be your first 'hit'. Click on the newspaper's website link and then when you get there key 'Barbara Pointon' (or whatever you are looking for) into the newspaper's own search engine. Et voila!

 

[gigi]

Phew!!!
I've got a lot to learn!!!!

 

[Nell]

Hi jimbob - I posted on this 'debate' way back when ..... and whilst always trying to remain open-minded about any means of 'assistance' to preserve as much as I can of my mother's independence (living alone)and seeing this type of technology as a possible means to achieving that, my reservations remain much the same.....



Is this the right focus? The purpose should surely be solely in the interests of the person who needs the assistance (I believe we are a long way yet from the type of thinking in the Children's Act that the 'child's interests' should always come first - and carers are a secondary consideration).



And herein lies to me the crux of the 'ethics' or the practicalities ..... how can you rely on a 'device' if the person needing it cannot be expected to remember to carry it with them - let alone where they might have left it last or even what it is for? The only way to ensure they are at all times in 'possession' is to 'tag' (ugh sorry - hate that phrase) ... they have no freedom of choice ...... or what ability to change their minds in more lucid moments? Are we not then denying them their rights to apply choice when they are able?

I have removed what 'assisted technology' mum had in her home as she failed to understand the purpose - it had been installed pre-dementia diagnosis (a 'Care on Call system' to deal with falls due to osteo-arthritis and a first hip replacement). Once dementia was clearly in play - she was frustrated the 'gadget' didn't ring her up to check how she was, refused to wear the necklace she needed to activate the alarm or generally hid it or misplaced it .... it caused far more anxiety than it could ever do good .....

Just my experience ..... and yes, I am trying to keep an open mind ........ I feel bad enough she carries a note of my contact details in her bag in case she gets lost on the rare occassions she feels able to wander further than the corner shop ... and has her house key (willingly) on a ribbon around her neck ..... it may be promoting independence but I can't help but feel it is demeaning to any self-confidence ...

When someone can convince me that tagging is not a substitute for adequate care and supervision (and I am not suggesting that is only provided by the primary carer but with support of professional services and a society which understands and meets the unique needs of dementia sufferers) I might sleep easier on the issue ...

Just my personal view but in so many walks of life we are keen to use technology simply because it is available - it does not necessarily mean because it is there it is the best solution. I'm an old-fashioned humanitarian techno-phobe at heart, I guess.

Karen

Dear Karen,

As you know, I mostly agree with all you say! On this issue though, I do differ. Whilst totally agreeing that there are some (possibly many??) dementia sufferers for whom the technology would be too advanced, it may well be that there are others for whom it is a very useful tool.

I don't think you could rely on a person with dementia living alone to remember to keep their phone charged and turned on. (Heavens! I can't get hubby to remember and he doesn't have dementia!) So for those people it may be no help.

But where there is a Carer at home who can see to that part, it only takes insisting the person always has it with them. (I can see you asking "how do you do that?" ) Agreed! It would not be possible to ensure it, but Carers have great ways of getting around problems creatively and some may be able to do this - perhaps by putting it in the person's coat or handbag at all times, in the knowledge that they will automatically take that with them . . . . ???

As for supporting Carers, I see this as a natural by-product of the process. If the person is "safe" then the Carer is reassured. My main reservation is that it may lead Carers to be TOO confident that all is well. After all, a person can leave a mobile phone anywhere - or take off the coat it is in. Once the person is separated from the phone, it becomes a useless tool.

Despite the obvious limitations of the system, I think it is worth while and I congratulate Jimbob on his efforts. If his organisation takes on board the comments and criticisms of the system, they will be able (hopefully) to continually improve it.

You have my total sympathy on feeling unhappy about the reduction of personal dignity that any devices (even your note in your Mum's bag) bring about for the person you love who has dementia. The dignity issue is one that is close to my heart and brings me a great deal of sadness. I HATED to see my Dad lose all his dignity in his final days, and with Mum, it is the slow but inexorable loss of personal dignity that breaks my heart.

 

[Margaret W]

Noelphobic, what I was trying to say was that if criminals are thought to be worth tracking then vulnerable and valuable members of society are worth the same care - or better.

I suppose it came to mind cos the builder who was doing some work on our house in the summer was tagged as a result of thumping someone down at the pub (which of course he denied),and had to wear an ankle strap for 3 months cos he was not allowed away from home after 8 p.m.

Sorry if I gave you the impression that I was grouping our vulnerable friends and relatives in the same category as criminals.

Hope I am forgiven, I do tend to be a bit thoughtless in my comments when something gets to me. Apologies.

Margaret

 

[Tender Face]

Actually Nell, you have articulated far better than I did - some of my reservations .... methinks we are not too different in our thinking? - but so what if we are? - hooray for democracy!!!!

I worry that my own thinking might prejudice my mother's needs ..... so ..... looking at this issue on a practical level ..... and open to other ways of looking at this ......

"Mum, you remember that time you went AWOL and had managed to go to the hairdressers (5 minutes away) without telling anyone?"
"Did I?"
"Yes, but you were gone four hours .... and no-one knew where you were ........ "
"Oh yes, I got talking and then someone offered me a lift home if I had another coffee."
"But in the meantime we had X,Y and Z and looking for you"
"Oh really? But I had such a nice time."
"Lovely, but would you mind wearing a tracking device so that if you do it again I don't have to send out the search parties?"

Absolutely not decrying jimbob on his efforts - even in the small illustration I have given - many people must think I am mad not to be looking up and taking up this type of option ..... it seems a solution to my anxiety about mum's safety ..????

Why doesn't if fit? Because it is about MY anxiety - not mum's self esteem? How do you even broach the topic of consent????? - I thought EPA was bad enough? "Sorry, mum, but I don't believe you are capable any longer....... ' How much more do I throw in her face?

Karen, x

 

[noelphobic]

Noelphobic, what I was trying to say was that if criminals are thought to be worth tracking then vulnerable and valuable members of society are worth the same care - or better.

I suppose it came to mind cos the builder who was doing some work on our house in the summer was tagged as a result of thumping someone down at the pub (which of course he denied),and had to wear an ankle strap for 3 months cos he was not allowed away from home after 8 p.m.

Sorry if I gave you the impression that I was grouping our vulnerable friends and relatives in the same category as criminals.

Hope I am forgiven, I do tend to be a bit thoughtless in my comments when something gets to me. Apologies.

Margaret

no apologies or explanations were called for here Margaret. We are singing from the same hymn book - sometimes we are on a different page but otherwise we are all in tune!

take care

 

[noelphobic]

How much more do I throw in her face?
Karen, x

That's a tough one Karen BUT sadly, sometimes circumtances conspire to force you to throw a lot in your loved ones face.

Not what you wanted to hear, but sometimes sadly true nevertheless

 

[Lucille]

Hello all

I've read all the posts with interests and can see both sides of to tag or not to tag (Karen, I hate the phrase too, but I'll use it for consistency here!).

Elaine's experience with her dad shows a valuable example of how it can work and for me, with my mum, who has gone 'missing' several times whilst I have had to marshal support from a distance, the GPS device sounds ideal. Elaine, can you PM me all the details, please?

Like Karen, I have reservations about whose interests the tagging would be protecting. Mum's or mine. On the face of it, it would be mine, because it is only me that is worrying about her being out until midnight. However, mum has lost her reasoning ability and has dementia so is it not her wellbeing I am trying to protect?

I have gone through the various scenarios of a mobile phone for mum (but she would forget it, not charge it up, lose it, be targeted by some opportunistic lout). A phone card, so she could call from a public payphone to at least tell someone where she was - but as she doesn't think it's unreasonable to be out 'shopping' at 11.00pm, then why should she call?

As Brenda said, unfortunately we do have to throw things in the face of our loved ones, it's a sad fact of dementia. If I hadn't for the want of a better phrase, 'thrown in the face' of my mum that she had 'memory problems', then she would not have any support at all because as far as she's concerned 'it was a stroke that she's now fully recovered from'. (If only!)

In an ideal world, dementia sufferers would have all the care and support they needed (and so would their carers) but as we know, elderly and dementia care in this country is not what it should be. Until it is, then each of us has to look at our own situation and make a decision based on what our loved (and not so loved) ones need. There's no right or wrong answer.

Gosh! All very profound from me on this new year's night.

 

[Nell]

Dear Karen,
You are right! I think we are pretty close on our thinking about this one. I hadn't really considered the aspect of getting our loved ones to agree .

I know that it is exceedingly difficult to get elderly folk (even without dementia) to wear their alarm calls. The stories of these being tucked away in bedside table drawers when the person collapses in the kitchen or the garden are myriad!! And the stigma of wearing an alarm is MUCH less than that of the dreaded tag!

As others have said, it is a vexed question and one each person (family) must decide for their own loved one.

However, it is great to see organisations giving thought to this and "putting their money where their mouth is"!! Well done to those trying to solve some of the problems.

 

[jenniferpa]

! And the stigma of wearing an alarm is MUCH less than that of the dreaded tag!

Although I'm sure some people won't wear alarms because of some perceived stigma, I think 90% of the people who have them and don't wear them are because they forget to put them on. I suppose there might be people who obtain these for relatives without consultation and then those relatives refuse to wear them, but most people have, at some point, agreed to them but don't remember to put them on.

That's going to be a problem with any of this sort of technology - if it can be taken off, it will be taken off, and as for remembering to put it back on...

 

[ElaineMaul]

Hi Lucille,
I have sent you the information via a PM.
I actually agree with so many of the comments that others have made. It is difficult, that's all I can say!
At the moment, Dad is very mobile and fit for his age. I often think that when he gets lost, what happens is that he's been on a bus and, especially if it's dark, he doesn't know where the bus is because it's difficult to look out through the windows (and I'm sure lots of us have been there!) and he gets off where he thinks is the right place..... but it isn't. He then walks around trying to 'fix' on somewhere he recognises. And, of course, his memory problems make that difficult for him.
Although I suppose someone should always be with him..... frankly, he wouldn't want that! If 'we' (and I guess I just mean my Mum as primary carer) tried to limit his movements, I know it would agravate things and would provoke an argumentative/agressive episode.
As with all things with this dreadful disease, it will be a suck-it-and-see thing. More than likely, after an unknown period of time, it will become obvious that he CAN'T be let out on his own..... we will cross that bridge when we get there. At the moment ..... yes, it stops me (and my Mum) worrying too much. It makes me feel better because it's a concrete way I can support my Mum and it keeps my Dad independant for a little bit longer.

At the moment, it's in the inside pocket of his winter coat. I can anticipate problems as the weather starts to improve if he goes out and decides to go out with another coat, without my Mum noticing. I'm not sure how we tackle that one; perhaps a big sign on the front door saying 'Is Elaine's device in your pocket Dad?' ..... Oh Boy .... where do I apply for a job with Nato

In addition, I'm unsure about the system jimbob has described. Locating a mobile phone itself via the mobile phone network is not as accurate as the GPS system, even if it is cheaper. I spent a fair bit of time researching the different approaches and didn't feel very happy that the mobile phone tracking mechanism would give me the peace of mind I was after. GPS devices are more expensive; luckily we have the private resources to cover it which I know not everyone will have.

Elaine

 

[shauny]

Hi All, a useful & interesting debate. I attended a conference recently on this subject and my employer now has a contract with a specialist company. The technology they provide is a sensor for each room in a clients house. These sensors are linked to the company and the internet. The sensors apparently work 24 hours a day and they can show where a client is in there house at any given time. I have a slight ethical problem with this and i have yet to order a package. I did ask is video technology on its way so some person in a control room can sit and watch a person with alzheimers all day/night. The company rep said there was no plans. As a very cynical social worker i predict in a few decades possibly every older person will have there own personal robot/cyborg to look after them. What the robot or cyborg will thibk of dementia is another question. My personal belief is that all the technology in the world cannot replace human contact. Shauny

 

[Lucille]

My personal belief is that all the technology in the world cannot replace human contact. Shauny

How true! In terms of cyborgs/robots, well, it's the stuff of nightmares. For sure, humans don't understand dementia so how can a robot be programmed?!

 

[tonyshuie@yahoo]

TR 101 Device

Hi,
It was strange coincidence that these GPS tracking devices were in the news today ..... and that the one I bought for my Dad was able to prove its worth for the first time today as well.

I posted a request some time ago about other people's experiences with these and someone (name escapes me) posted a useful link about a TR101 device. This was the cheapest option I could find for a GPS device (and also the manufacturer's website gave access to documents explaining exactly how it would work and what was required which I liked), although it does require you to have a person at home base to take the latitude and longtitude values that the device sends to you in a text message and input them into Google maps in order to be able to work out where the position of the device actually is.

However ...... back history first! I wasn't sure initially how Dad would take to having this thing on him...... it's not as small as I would have liked..... just slightly bigger than a mobile phone. However, I put it in a little snap-top plastic bag with a message from me to say that Dad was to keep it in his pocket so that I wouldn't worry about him ...... you see, initially he was very indignant about it ..... 'I don't get lost!'

So .... this evening..... Mum phones because Dad has been out a lot longer than she was expecting. They live in Enfield, but from 2 messages we sent to it, we could see that he was in Edmonton and going south...... the opposite direction. So.... left husband at home to do the tracking and I and my son went out in the car. Husband sent some more messages as we got closer to Edmonton...... he seemed to be travelling rather fast..... must be on a bus! Oh Dear..... this could be tricky. I had visions of stalking a bus and hijacking it to find my Dad (I can see the headlines now!). However, as we then got closer, he was moving slower so we guessed he had got off the bus. However, trying to drive slowly and look for someone is not easy, so we parked and walked along based on what my husband was telling me over my son's phone. And..... it worked a treat, found him within about 5 minutes. He was glad to see us; he does realise he's not sure where he is. However, he does like to go out for long walks and, to be honest, my Mum can't keep up with him. Infact ...... I'm not sure I could either! Just before Christmas, we took him over Bluewater and spend all day walking round. The next day, my legs ached terribly ...... but my 76 year old Dad was perfectly fine!
So, is carrying this device an infringement of his liberties? I don't think so. What else would we do? Drug him to stop him going out in the first place? That would be a more worse infringement surely?
Anyhow...... from initial phone call to us in Cheshunt at 6.10pm to finding him, taking him home and coming home ourselves at about 7pm or thereabouts, I think the device is brilliant! Mum doesn't have to worry too much and we can find him easily.

Believe me, the last time Mum thought he was out longer than expected, I started to go out in the car with the intention of looking round the streets closer to his home...... but realistically where would you start? And if he was where he was today, I would never have found him!
So..... the articles in the paper today were trying slightly to be alarmist ..... but I think these devices are great!
Elaine

The infomation on the TR101 Device sounds great . My father is suffering from Dementia. This tagging sounds a good idea. He went missing earley today 5 of us were out looking for him he ended up at a police station saying he was lost. Please were can i get one. He was missing for about 3.5 Hrs.