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Recording someone with dementia

ronsalk

Registered User
I was thinking about recording my Mom when she is having an episode and playing it back later when she is in a better frame of mind so she understands that she needs help. Her Dr. wants her to see a neurologist but she says that I am the one with the problem and refuses to go. Would this be a good idea? What do you all think?
 

Cat27

Volunteer Moderator
Feb 27, 2015
10,955
Merseyside
Welcome to TP :)

Personally I think it would be cruel to cause her unnecessary upset. Her brain isn't working properly & she can't help what she does.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,695
Kent
I think it`s a bit mean. I don`t know why I do. It might get your mum to the doctors, but on the other hand, if she has no control over her behaviour, it could really shock and upset her.

I worked with a little boy who had behavioural problems and was always scowling. I held a mirror to his face and he covered his eyes with his hands. It made me feel mean then.
 

Spamar

Registered User
Oct 5, 2013
7,069
Suffolk
She won't believe it's her, anyway. Why get into an argument about something over which she has no control?
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
I think this would be cruel thing to do. Why heap more distress on someone who is already suffering from this horrible illness. I also doubt that it would result in the outcome you hope for as a loss of logic is a symptom of dementia - as are probably the episodes you are referring to. I think my husband would have cried if I did this to him.
 

Angie1996

Registered User
May 15, 2016
515
Somerset
I used to take photos of my dads hair when he shaved it all off on the sides and record the messages he used to leave on my phone of him ranting and swearing at me down the phone etc, I used to show him the pictures and messages etc, I quickly learnt it was pointless! he would be shocked at the time, and within minutes he would forget.

It never upset him, but I gained nothing from it as he forgot!!

He never understood he was ill.

I used this evidence to help me later on though to get the help he needed, so it did come to some use in the end.
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
Used as evidence of aggression to validate claims of behavioural problems to the professionals is quite acceptable in my book but to use it against someone already suffering (even if they won't admit it) just to get a point across is, to me, both unkind and pointless.
 

Angie1996

Registered User
May 15, 2016
515
Somerset
Used as evidence of aggression to validate claims of behavioural problems to the professionals is quite acceptable in my book but to use it against someone already suffering (even if they won't admit it) just to get a point across is, to me, both unkind and pointless.
Each to their own Saffie, everyone deals with their loved one in different ways, we can all share our stories to help others.

No one is trained to deal with someone with this illness and learn as they go along in the months ahead.

I think "cruel" is a harsh word to use, its not cruel, it's trying whatever you can to help cope with the situation at the time for you as the carer and the person that is ill.

None of us are professionals.
 

LYN T

Registered User
Aug 30, 2012
6,960
Brixham Devon
The OP asked 'what do you all think?' and, in my opinion, Saffie was addressing the question. When my late Husband had pockets of awareness he would have been distraught being shown how he acted. Although Pete would have forgotten what he had been shown, he would still feel the emotional fallout of such action.

I do agree that showing the recordings to professional is a good idea
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,087
Nottinghamshire
I think it might be worth the upset if it gets her the treatment she needs. As we all know it's not just the person with dementia who suffers with this disease and showing the recording to the relevant professionals will help them to see exactly what's happening.

Cruel to be kind? Maybe.

Just my opinion. Good luck


Sent from my iPad using Talking Point
 

LynneMcV

Volunteer Moderator
May 9, 2012
3,857
south-east London
Doing our best as carers is an emotional subject at the best of times isn't it?

ronsalk is obviously in a quandary about the best way forward in this situation and using other TPers as a sounding board about how a particular proposed approach might be viewed.

We have seen honest opinions given in a supportive and totally non-judgemental way but I can understand why it feels so sharp and close to the bone for some as we are all so deeply involved in doing what is best and what is right for our loved ones.

Nobody is accusing anyone of deliberate unkindness, cruelty or meanness. This is just a hypothetical situation needing feedback in order to help the OP.

Personally, I don't feel there is anything beneficial to be gained from showing mom what she is like at her worst. I feel such a move will scare her and make her feel trapped - and when we feel scared and trapped things go from bad to worse. Far better in my opinion to work slowly and compassionately towards a point where mom is ready to take that step.

In the early days I found that leaving leaflets around the house about memory issues helped. My husband would pick them up and browse when he wanted to, rather than having me telling him all about it. He asked questions when he was ready. By that time he already had a more positive outlook about dementia because he knew from the leaflets that there was help available.
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
I think it might be worth the upset if it gets her the treatment she needs. As we all know it's not just the person with dementia who suffers with this disease and showing the recording to the relevant professionals will help them to see exactly what's happening.

Cruel to be kind? Maybe.

Just my opinion. Good luck


Sent from my iPad using Talking Point
As I said, recording in order to obtain help and support from professionals who would otherwise not be aware of the extent of the problems is justified. However, I doubt if showing a recording to a dementia sufferer would bring any such response. It would probably cause further distress and would be forgotten about very quickly. Therefore what would be the point?

Angie, you are right, none of us are professionals. All we can do is to do the best we can for those we love and care for which, to me, means trying not to add any unnecessary distress to an already distressful situation. What would be the point?
Far better to use gentle persuasion and the chance of possible medication to help with the way one feels so that the sense of fear and hopelessness can be alleviated.
 
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Spamar

Registered User
Oct 5, 2013
7,069
Suffolk
The question was, would it be OK for the pwd to be recorded and it played back to her so that she would go for treatment.
Short answer, in my book, no.
There is no indication of competence. She won't believe it, so there's nothing wrong,, so why should she go? If she's not competent to judge, just how is one going to make her go. Heaven knows, many of us has had problems with things like that!
If you want to record behaviour for a professional to view, well, OK, but don't show the doc with the pwd present! I can imagine the scenario.
I'm not qualified to judge the ethics, though I would guess the end justifies the means! However, the question remains, how to get pwd to the specialist?
 

cragmaid

Registered User
Oct 18, 2010
7,941
North East England
So... one makes a recording and shows it to the person causing the distress.......
1) They get disturbed and upset.
2) They deny it's validity.
3) They become angry and accuse people of abuse.
4) They forget it's existence.
None of this actually achieves anything positive.

You make a recording and make it available to a medical professional at a time when the recorded person is not able to see it..... it provides an audible or verbal or pictoral demonstration of one's concerns, thus providing useful evidence.

One then asks the Medical Professional to visit the patient or to make an appointment for the patient to visit under a general " Well Person Clinic" ruse.
 
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Bod

Registered User
Aug 30, 2013
1,219
The question was, would it be OK for the pwd to be recorded and it played back to her so that she would go for treatment.
Short answer, in my book, no.
There is no indication of competence. She won't believe it, so there's nothing wrong,, so why should she go? If she's not competent to judge, just how is one going to make her go. Heaven knows, many of us has had problems with things like that!
If you want to record behaviour for a professional to view, well, OK, but don't show the doc with the pwd present! I can imagine the scenario.
I'm not qualified to judge the ethics, though I would guess the end justifies the means! However, the question remains, how to get pwd to the specialist?
The pwd goes to the specialist to show just how good they really are.
It's in the pwd interest to go, as this proves just who has the problem!

Bod
 

Suzanna1969

Registered User
Mar 28, 2015
346
Essex
I'd agree it would serve no useful purpose. Even if your Mom watched it and agreed she should go to the doctor, by the time you got her there she wouldn't be able to remember why she was there or what she had seen on the video. Better to get her to the doc on some other pretext, maybe emailing the footage to the doctor to a confidential email address beforehand so he/she can see what you sometimes have to cope with.

I had considered recording my Mum when she had her UTI and was hysterical in case health professionals didn't believe me. Mum was so compliant and docile in between times. However that turned out not to be necessary, thank goodness. I might do so if circumstances dictate in the future but I am pretty sure I would find the footage distressing enough to watch myself and would never let Mum see it.

Dementia is, I've found, all about the 'here and now'. It can all turn on a sixpence and how she was and what state she was in 5 minutes ago has no bearing on the immediate present. Oh and Dementia has no truck with logic or reasoning! Once you get a handle on that it makes things easier, in a way.
 

TrixieB

Registered User
Jul 2, 2015
20
I was thinking about recording my Mom when she is having an episode and playing it back later when she is in a better frame of mind so she understands that she needs help. Her Dr. wants her to see a neurologist but she says that I am the one with the problem and refuses to go. Would this be a good idea? What do you all think?
Hi there
Before my mum and dad were formally diagnosed and they spoke harshly to me or others, I would pick them up on it, all to no avail. At that time I couldn't understand, why THEY couldn't understand what they were doing. Over time and with more knowledge of dementia I learned just to let it go as (a) they don't realise that they're doing it, and (b) will promptly forget that they've done it in the first place.
Now, when dad tells me that mum's going to punch me in the face if I don't take her home, I just ignore it and humor him. It's difficult I know, but you just have to keep plodding on until you can get a result.
Recording her would be a good idea but only to highlight to professionals what her true behaviour is like.
Is it possible to arrange for the psychiatrist to visit your mum at home? Our community consultant psychiatrist came out to assess both my parents at home which made things so much easier. If you can be there too you can keep him right on her true behaviour (when she's out of the room!)
Hope this helps.


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saskia

Registered User
Aug 10, 2015
124
North Essex
Doesn't work I'm afraid....

I have countless messages left, nasty, ranting, swearing etc, I did play back to mum during a particular difficult moment...She denied it was her!

Sorry.......I know you are looking for answers to help....I sit here awaiting my 27th call of the day asking where dad is ( died) dog ( died) & nothing works.

Thinking of u

Sas x
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
Ronsalk, hello and welcome to Talking Point.

I've not read all the responses, so apologies if I repeat something.

In my opinion, this will likely not achieve the result you want. You state that you want your mother to understand she needs help.

If your mother has dementia, then you, in all probability, cannot get her to understand she needs help. The logic and reasoning part of her brain no longer functions correctly and no amount of proof, reasoning, or discussion will change that. To be blunt, her brain is broken. Just as you would not expect a person with a broken leg to be able to walk on it, you cannot expect a person with dementia (PWD) to be able to function in a logical and reasonable manner.

Does she sometimes have clarity and understanding? Quite possibly. She may also sound very lucid, or actually have a lucid moment when her memory and understanding are okay. But higher functioning reasoning is usually very impaired.

Of course, everyone with dementia is different, and presents differently, and different types of dementia damage the brain differently.

However, many people with dementia do not have the ability (again, due to the damage to their brains) to understand there is anything wrong with them, so they will deny they have a problem, in the face of overwhelming evidence to the contrary. This is called anosognosia.

You might find a different approach brings the results you want: Mum, I know you don't want to go to this other doctor, but your GP said you needed to go, so we will just go and get it over with. I know there's nothing wrong with you, and you know there's nothing wrong with you, so not to worry. I know you don't want to go; however, the GP/NHS says you have to.

Always blame things on someone else, a figure of authority is a good choice. I blame the doctor for a lot of things! (I know you don't like taking so much medicine, Mum, but the doctor says you have to. I know you hate the compression stockings/TEDS hose/JOBST stockings, Mum, but the doctor wants you to wear them. Et cetera.)

The UK Alzheimer's website has lots of good information about dementia. This might get you started: https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200120

Wishing you all the best.
 

ronsalk

Registered User
Thank You All

I appreciate the feedback and have nixed the idea. I am still faced with the challenge of getting her in to see the neurologist. She has agreed once and I made the appointment but when the day came she refused to go so I had to cancel. Does anyone have any ideas that might be of help? it will take a couple days from the time the appointment is made 'till the actual appointment.