Tagging those with dementia?

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here

I can see the pros and cons - part of me baulks and thinks "THEY ARE HUMAN BEINGS!!!" the other part remembers my g/dad wandering, if he hadn't lived in a close knit community he would have been much less likely to be returned home.

A friend of mine's dad (who has Alzheimers) managed to get lost whilst they were all in Rome, literally they turned their back for 5 seconds and he was gone. It was absolutely horrific, they really thought he had died. Was found two days later, very dehydrated, on a train to Naples, just awful. I think she'd definitely favour the tagging scheme but I can also see how you could view it as the thin end of the wedge, mental health situations etc as SantaBabyBeenAnAwfulGoodGirl says.

It's a shame though if something that would potentially save the lives of the most vulnerable people in a community isn't used because it might be extended too far. Ethical considerations are given great weight these days and I think it would be easy to ensure it wasn't misused.

I appreciate what you say yurt..think I've just clicked who u are

I find it a great dilemma truthfully...

agree yurt. tiredemma i'm very glad there are people like you who care about the people they look after. It is very easy to get fatigued in that line of work, and stop seeing the patients as individuals. I wish there was more money spent on staff's salaries and training, etc, for those working in dementia units.

I dunnno- when ds1 was in mainstream there were a lot of things that he wasn't allowed to do because 'it wouldn't be fair on the other children' (not sutff that would affect them btw- just stuff that would have allowed him to access various things differently). To me it seemed a bit like taking away say a wheelchair because 'it wouldn't be fair on the other children'.

Of course this is the sort of thing that would need to be thought through on an individual basis- but I don't think that needs to be all that difficult tbh- and I know that the sort of place that ds1 will end up in (because we won't allow him to go anywhere else) does see each person as an individual and everyone has their own needs met (so some people always have 2 members of staff for example, others may not have 1:1 all the time, all residents have their own bathrooms but not all residents are allowed free access to their bathroom etc). Really decent care environments will be used to treating people as individuals. Of course it costs to do that. The place we would like ds1 to go as an adult costs 300 quid a day- but that sort of environment will be able to take into account the balance of personal liberty vs safety. And that's the main aim of this sort of device surely- not to track people and find out what they get up to, but to keep people safe. I don't think its that hard for service providers to realise when they're going too far in the wrong direction.

We had to call the police helicopter out to find FIL last week so would be glad to have this facility. The care we receive is so poor anyway I cant imagine this making ti any worse. At least we would know where he was.

The services that operate panic alarms now have monitors that alert the call centre if someone gets out of bed in the middle of the night and doesn't return within a set period. The monitors provide low-level lighting so the resident can see their way to the loo and avoid tripping. If they don't get back into bed soon, the call centre gets in touch to check whether they are just making a cup of tea or if they may have fallen.

Doesn't seem too far removed from tagging, tbh. And it does apparently help people to stay in their own homes rather than going into residential care. I dunno, maybe the fact that it provides lighting makes it seem more 'this is practical help for you' rather than a scary surveillance thing?

Now you see I find that scarier and more intrusive and more of an ethical concern than tagging those with dementia or the ds1's of this world. The thing with tagging ds1 (and presumably dementia patients on a locked ward) is he doesn't go anywhere unless he's with someone so there's nothing to survey anyway. No secrets to be revealed etc.

My mother has no privacy. She can't , it is simply too dangerous.

Before she broke her hip, she had the freedom to wander the three wards. Since she broke her hip she has been largly limited to a chair. For her own safety she has a 'seat belt' to stop her wandering further, and breaking anything else.

Now I dare say that to some people this sounds horrific. My mother is essentially strapped in a chair. But what else can you do? Even with 100% 1 to 1 she would not be safe. And when she stands she is in a large amount of pain, but she can't remember this. Without the seat belt her day would be one of constant struggles and vast amounts of pain. With the seat belt she is mostly content. She can't really be happy any more, she doesn't have the ability Content is the best we can manage.

interesting points on here

once sadly like mbs mum then tagging is irrelevant as she is not able to wander now sadly

i can see yurts point for ds as he is physically more than able to run off and for him to live to his potential he will be in situations where he could disappear from supervision

but when the tag would be most useful is if it was on people who are on their own before they disappear or not under lock and key 24/7 or one to one supervision...so these are people who still have the ability tomake up their own minds in some respects and still have hopes wishes and desires and autonomy of some kind

it's the point at which that autonomy should be compromised in the interests of their safety or the wishes of their carers and be tagged that would be hard to decide and agree on

i've been in the position where i think i am able to make my own choices about my immediate whereabouts but other people have thought differently and i wouldn't want to wear a tag but i can see how it could be seen by opther people as a good idea because it would make things easier for them thats the area that concerns me

when it comes into the area of doing things for someones own good it isn't always for the good of the individual concerned but sometimes for the good of those who have taken the responsibility for that person upon themselves not always with that person's co operation

i find this hard to explain

sometimes family and professionals want to take decisions from individuals and those individuals don't want their autonomy taken away

family and professionals sincerely believe they are acting in individuals best interests as they themselves want peace of mind

i think there might be a time in dementia when it would be useful as it is a progressive illness

but i think it would open a door for use in mental health which would be far more questionable

I can see both sides of this really- my dad would be horrified and humiliated at the thought at the moment, but I can see that it's not something that could be ruled out in future, it might lessen anxiety all round. Zippi, I think you have hit the nail on the thread with the progressive nature of dementia- that's the key difference from BPD, say. I do think it could be a slippery slope if it started to be acceptable practice in mental health areas in general, but maybe if the times when it could be used were carefully defined it would be very useful. The thing is you can't define it as only in progressive illness because I can also completely see how useful it would be for yurt's ds, for example. I am not getting anywhere with this am I....

tiredemma, I do so hope that when my dad has to go into a home there will be people like you working there- you give me hope.

ah i think you can see where i am coming from tamum

I think that there is a case (obviously) for respecting the wishes of the patient.....my mother would have been horrified at the thought of being 'tagged'. But this has to be weighed against the utter horror that she would have had of being found wandering the streets in her night things. She would have (had she been in her right mind) been utterly shamed and distressed at this thought.

And while tagging would have upset her on one level, it would have saved her from humiliation and the family from a vast amount of stress and upset. And only by the grace of god was she not run down by a car or assaulted.

I can understand the worry that this presents to people with different mental illnesses. But the law already allowes a degree of 'control' of people in this situation. I can't see that the introduction of 'tagging' is so very much different to the fact that I have control over my mothers financial matters....we have an enduring power of attorney. there are legal controld over this that preotect the rights of the person, i don't see that the rights of tagging couldn't be controled in a similar way.

I think it is a good idea. In a hospital there will be 10-15 dementia patients who wander and fall and are impossible to re-orient. They cannot understand or remember directions. This one nurse will also have 10 other patients who are acutely ill, coming and going from theatre etc. These people should be given a one to one carer but no one wants to spend the money to do it. I think tagging is a good idea. One of our patients was found wandering in the streets and caused a car accident.

I asked my sister (a learning disability nurse) what the guidelines are for restraining patients with, e.g. lap belts. She said the decision to use restraint for someone who is incapable of consenting should be made by three health professionals from different disciplines, such as a nurse/doctor/physio.

it is only appropriate for patients who cannot weight bear i.e. cannot stand and walk unsupported. It is not recommended as a way of reducing risk such as the risk of someone falling - someone who might fall should have the care they need to prevent this happening. However, in the real world... she has a patient who has a lap belt because she cannot weight bear but will attempt to get out of bed or a chair when she is agitated. She is only agitated when she needs something i.e. food, drink, toileting. So the lap belt gives the staff the few moments they need to reach and assist the lady before she falls over.

Anyway, when they are supporting this patient to get out of bed or bathe, there should be three nurses at all times. But often there are only two of them so they have to do it anyway even though it is not really safe for them or the patient.

My sister works in an acute unit, attached to a hospital, for people with learning disability who have acute healthcare needs, btw. So the patients are not permanent residents, in theory, at least.

(that includes people with dementia, apparently.)

My mother constantly tries to stand, but because of her very frail state, and the pain in her hip following her broken hip of a few years ago, she cannot hold herself upright for more than a few seconds.

During that time, she will become even more disoriented with the pain, and will fall. Because she has no speech she cannot make her wishes known. And she is so demented, I'm not even fully sure that she has wishes any more

Because she has osteoporosis she would almost certainly break a bone.

I have no qualms that my mother is restrained. My only qualms are that I absolutely know she would not want to be living in her current state.

She is astonishingly well cared for by staff who see the needs of the patient as their most important duty. The staff are exceptional, and the facility is first rate. but my mother has no real 'life'. But the heart keeps beating.

Seeing her state against that of dh makes me rail about the unfairness of life, for both of them.

In that case, she can't weight bear, so restraint is appropriate. Very sad situation all round, do feel for you MB.

I thought about this tagging situation last night on a night shift at work, looking at each resident and seeing how they would benefit from it- there was 4 residents (3 males and 1 female ) who all walked around together last night until about 3am this morning trying different doors on the unit to get out ( trying to force fire doors etc)- had they managed to get out- and heaven forbid - get off the grounds, a tagging device would be a Godsend.

We also had the odd two or three last night who are unstable on their feet and constantly kept trying to get up and down out of chairs, one of them falling twice. I cant see where I work ever condoning the use of lap belts, we just have to make sure (when possible that we are in close range of those that are at most risk of hurting themselves.

On another note-I found out last night when I arrived for work that one of my most favourite residents- Jen- a 57 year old lady sadly died on Boxing Day after being transferred from our unit to a local hospital- she had a cardiac arrest. I was most pissed off to hear taht one of the staff nurses on the hospital ward phoned our unit complaining of Jens behaviour and asking if she normally swore and shouted etc ( she had dementia FFS). It upset me to think that she spent her last few days in hospital, probably being ignored or drugged up to the eyeballs as her 'behaviour' was not acceptable.
Her lovely elderly mother would pay £30 a day in taxi fare to come and visit her, I really felt awful for her when I heard this news last night.

This has turned into an essay hasnt it!? sorry- Dementia is cruel and awful- bloody truly awful.

We had a similar situation when my mother broke her hip and went to and orthopaedic ward.

the nurses just didn't 'get' the situation at all. they kept trying to get my mother to talk to me.....a total waste of time, since she hasn't recognised anyone for about 3/4 years. In the end I just had to say, 'Please leve her alone, she hasn't recognised me for years, she has dementia'

They looked horrified. I'm not quite sure if they were horrified at my mothers illness, or the blunt way we have come to deal with it.

My mother would never be safe with 'just' supervision. She tries to stand all the time that she is awake. She would need someone sitting with her 24/7.

It is (even taking into account dh's illness) the hardest thing that I have ever had to deal with. demetia is just such a vile thing. It kills the person and leaves you with a shell.

My grandmother had dementia- 'luckily' she became unable to move and spent the last few years of her life in bed. She wandered in the early stages but her 'descent' was quite rapid and I think it would have been ethically hard to tag her in the wandering stage as she would have been aware enough to know. On the other hand she spent the early stages scared quite a bit of the time- she was aware enough to know her mind was going- so maybe she would have chosen it. It is a truly vile condition.

in DS1's case it would probably only need to be used in certain circumstance. We have to stay in hotels for 2 nights over easter- I am going to use MB's earlier suggestion (already asked dh and he agreed). Although whether ds1 allows us to get any sleep anyway is another matter entirely

Check the panic button before you go, I think the wearer can press to set off the alarm. It might be best to sew it into the hem of ds's pjs if that is the case

• you sound like a wonderful, caring daughter MB. Sadly many in our home have no family (or what appears no family that cares about what is happening to them)

You are so right about 'the shell'- our residents have 'memory boxes' ( a perspex framed box) outside each of their rooms with family photos, their own wedding photos - photos of themselves as children etc. Absolutly gutwrenching when they have no clue that the person on the pic is themselves on their wedding day- or their child.

When I was on my General Nursing placement this year, each time we had a patient on the ward with dementia the nurses would say "here you go- heres one of yours- you can deal with them" Just because I was a Mental Health nursing student. I was so angry, just because you dont know who/where you are does not mean you deserve less care.

sadly there is nothing that can be done is there?

Very thought provoking thread.

me sew??? It probably is best 'hidden' in some way. ONe less thing to worry about on what is going to be the most horrendous 'break' I have ever been on- so thank you you star!