Recommended thread Compassionate Communication with the Memory Impaired

Lady M

Registered User
Sep 15, 2018
292
Essex
The following piece was posted a while ago on TP and made a big impression on me. It is something I have referred to time after time and tried hard to follow.

We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if it had a Thread of it`s own.

It`s a tall order but an excellent guideline.


Compassionate Communication with the Memory Impaired

by Liz Ayres
A Volunteer of the Alzheimer's Association and Former Caregiver

DON'T
Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.



DO
Give short, one sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate 'but' from your vocabulary; substitute 'nevertheless.'
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something’s wrong (even if it’s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient and cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please.elevate your level of generosity and graciousness.



Remember

You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.

They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them ... always. For example: they don’t hide things; they protect them in safe places... And then forget. Don’t take ‘stealing’ accusations personally.

Their disability is memory loss. Asking them to remember is like asking a blind person to read. (“Did you take your pills?” “What did you do today?”) Don’t ask and don’t test memory! A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. (“You need a shower.” “Day care will be fun.” “You can’t live alone.”) Don’t try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. Don’t argue, correct, contradict, confront, blame, or insist.

Reminders are rarely kind. They tell the patient how disabled they are – over and over again. Reminders of the recent past imply, “I remember, I’m okay; you don’t, you’re not. ”Ouch! Refer to the present or the future. (If they’re hungry, don’t inform them they ate an hour ago, offer a snack or set a time to eat soon.) They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it’s the first time. Some days may seem normal, but they are not. They live in a different reality. Reminders won’t bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn’t work, be kind ... don’t remind.

Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness: 1) distract to another topic, or 2) start a fun activity, or 3) reminisce about their spouse, “I was just thinking about ______. How did you two meet?” You might even try, “He’s gone for a while. Let’s take our walk now.”

Open-ended questions (“Where shall we go?” “What do you want to eat/wear/do?”) are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice, “You look great in the red blouse.”

They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can’t remember your reassurances. Keep saying them.

Examples

Don’t reason

Patient What doctor’s appointment? There’s nothing wrong with me.”
Don’t (reason) “You’ve been seeing the doctor every three months for the last two years. It’s written on the calendar and I told you about it yesterday and this morning.”
DO (short explanation) “It’s just a regular check-up.”
(accept blame) “I’m sorry if I forgot to tell you.”

Don’t argue

Patient “I didn’t write this check for $500. Someone at the bank is forging my signature.”
Don’t (argue) “What? Don’t be silly! The bank wouldn’t be forging your signature.”
DO (respond to feelings) “That’s a scary thought.”
(reassure) “I’ll make sure they don’t do that.”
(distract) “Would you help me fold the towels?”

Don’t confront
Patient “Nobody’s going to make decisions for me. You can go now ... and don’t come back!”
Don’t (confront) I’m not going anywhere and you can’t remember enough to make your own decisions.”
DO (accept blame or respond to feelings) “I’m sorry this is a tough time.”
(reassure) “I love you and we’re going to get through this together.”
(distract) “You know what? Don has a new job. He’s really excited about it.


Don’t remind them they forget
Patient: “Joe hasn’t called for a long time. I hope he’s okay.”
Don’t (remind) “Joe called yesterday and you talked to him for 15 minutes.”
DO (reassure) “You really like talking to Joe, don’t you?”
(distract) “Let’s call him when we get back from our walk.”



Don’t question recent memory

Patient “Hello, Mary. I see you’ve brought a friend with you.”
Don’t (question memory) “Hi, Mom. You remember Eric, don’t you? What did you do today?”
DO (short explanation) “Hi, Mom. You look wonderful! This is Eric. We work together.”



Don’t take it personally!

Patient “Who are you? Where’s my husband?”
Don’t (take it personally) “What do you mean – who’s your husband? I am!”
DO (go with the flow, reassure) “He’ll be here for dinner.”
(distract) “How about some milk and cookies?” .. Would you like chocolate chip or oatmeal?



Do repeat exactly

Patient "I'm going to the store for a newspaper."
Don’t (repeat differently) "Please put you shoes on."
"You'll need to put your shoes on."
DO (repeat exactly) "Please put your shoes on."
"Please put your shoes on."



Do eliminate "but", substitute "nevertheless"
Patient "I'm not eating this. I hate chicken."
Don’t (say "but") "I know chicken's not your favorite food, but it's what we're having for dinner."
DO (say "nevertheless") "I know chicken's not your favorite food, (smile) nevertheless I'd appreciate it if you'd eat a little bit."

Used with permission from Ellen Warner at Ageless Design
__________________
__________________

As per requests from members: another source of this information is here

http://www.ocagingservicescollaborative.org/wp-content/uploads/2013/03/Compassionate-Communication-with-the-Memory-Impaired.pdf
 

Lady M

Registered User
Sep 15, 2018
292
Essex
@Grannie G just read your post about communication and the extract shown! I will print this and keep referring to it! I will learn the rules, I hope!!! Thanks
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,391
Kent
@Grannie G just read your post about communication and the extract shown! I will print this and keep referring to it! I will learn the rules, I hope!!! Thanks
Please don't put yourself under too much pressure @Lady M and please see Compassionate Communication as suggestions or guidelines rather than rules.

We cannot get it right all the time especially when under pressure, sleep deprived and really worried about the people we are caring for.

We can only do our best and if we do our best is good enough.
 

Phelippe

New member
Dec 21, 2018
3
This is superb and even in the early, pre-diagnosis stage that we are in, absolutely to the point! It’s clear that if (as?) my wife’s condition progresses, the challenge for me will be how to maintain and develop my resourcefulness. I hope I will be able to find my way back to this thread on ‘Compassionate Caring’ so as to refresh my understanding.

Thank you.

Thank you also to Alzheimer’s Society for providing such a responsive website.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,498
Yorkshire
hi @Phelippe
welcome to TP
to be able to find this thread again you can press the 'Bookmark' button at bottom right of your post
then, to find any bookmarked posts, go to the extreme top right of the whole page where the blue bar is - press on the round icon and there's a dropdown list, Bookmark is 3rd down on the righg
 

scullet

Registered User
Jan 10, 2019
11
Dear miss cool

Thank you for the compliment but I am not the author of Compassionate Communication, just the messenger. xx
Hi Im new to this . dad just diagnosed two days ago and mum is doing all dont's! its so hard for us to watch our lovely dad who now forgets things but really wants to learn too. Thank you for thread x
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,498
Yorkshire
hello @scullet
a warm welcome to TP
glad you found this thread - it helped me to begin to see things from my dad's perspective and so I started to respond to him differently - it takes time to adjust to how things are now, rather than how we want them to stay, your mum will find her way
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,507
Dundee
Hi Im new to this . dad just diagnosed two days ago and mum is doing all dont's! its so hard for us to watch our lovely dad who now forgets things but really wants to learn too. Thank you for thread x
Welcome from me too @scullet.

I'm glad you're finding the thread useful. Please have a look round the forum - I'm sure you'll find a wealth of useful information. If you feel it would be helpful you might want to begin your own thread - if you have a question to ask or concerns to share - or even just to get something off your chest. Just go to the

I Care for a Person With Dementia

area of the forum and click on new thread. Looking forward to seeing you around.
 

lilypat

Registered User
Mar 1, 2019
211
Yorkshire
@Grannie G
Just found your post and its going to be huge help to me .hopefully I have managed to save it to print off later. Just reading it made me understand how much I am doing wrong
Thanks again
 

Lladro

Registered User
May 1, 2019
119
Thank you so much. Really, really helpful information. Each scenario difficult to emulate of course, but not an excuse for trying harder! I will try harder.
 

Rach1985

Registered User
Jun 9, 2019
398
Thank you so much, feels a lot to take in on first read. Definitely something to read again and again.
Just so much to take in, he has lost his hat (my dad) we have searched and searched because he won’t stop looking for it. We don’t know where else to look. We think we’ve distracted him given him something else to do and an hour later it’s back to looking for the hat. Then all of a sudden a day later he’s like oh that it’s only a hat don’t worry about it
 

Juba

Registered User
Jul 27, 2019
27
Thanks Sylvia

Won't come up as hypertext - you'll have to cut & paste the linkto see the original

Ayres, Liz, (2001) Compassionate Communication with the Memory Impaired. Alzheimer's Daily News (2001) Summer, Volume 16.

Last accessed Today!

Thank you Liz Ayres where ever you are: volunteer with the US Alzheimer's Association and former caregiver
Thanks Liz - really helpful when things get on top!
 

annielou

Registered User
Sep 27, 2019
495
Yorkshire
I'm not very good at this, I am a big reason and logic type of girl and also hate people (especially my mum who is my person with memory problems) to think bad of me so I find this very hard to do. I am also finding I am really not a very patient person especially this last year or so when I think I am pre menopause :eek: I am trying some of the time to follow these suggestions/tips but sometimes, ok probably a lot of the time, I don't think of them until it's too late. Today I tried at times to use them, keeping saying things the same, not getting annoyed with the same questions, then I forgot a bit and corrected her, then tried to apologise and take blame even though wasn't to blame, but then I fell of the wagon again and tried to reason and explain, which I shouldn't have done, but in a way it worked for mum today as I think she seemed to take it more as reassurance that even though she thought I'd not done something in a way me telling her I had seemed to make her feel better.
Today I rang mum and told her I was going over to visit, after I'd done some housework and had lunch and I'd be there for half past two, First time I told her was when I rang her at 9.30 and again when I rang her at 10.44, I said it in the same way a few times and tried to keep it simple.
She rang me back at 10.48 and 10.54 to ask when going and why that time and whether I was having lunch and should she have hers. She seemed to have got it but then rang again at 11.50 and 12.05.Asking the same things and I tried to answer the same way. (I know thats very precise record of times but I can see the times on my call log and it's a bit of a thing with me at the moment looking at the pattern of her calls)
When I got there a little bit before half two I was greeted frostily, 'I wish you'd tell me when you're coming' I said 'I did I said I'd be here by half past two when we were on the phone this morning' 'No you didn't I didn't know when you were coming'. No I thought I'm not supposed to argue so I said 'Oh I'm sorry' but she wasn't happy with that and after a couple more minutes of the same thing and her disapointment in me, I gave in to temptation and said I'm sorry mum but I did tell you, and when she asked me when I told her? I actually quoted the times at her :oops: I said 'I rang you at - & - and you rang me at - & - & - & - and I told you each time I would come for half two after I had done some housework and had my lunch'.
I didn't say it nasty, I did keep my voice calm and quite light, I just wanted her to know I wouldn't do that, but I thought to myself after I finished, that wasn't very good, you're not supposed to try and explain and reason and put her right but actually she surprised me by saying.
'oh right that's ok then, I must not av took it in but as long as you told me and weren't not telling me thats ok. Do you want a cup of tea love?' And was happy as larry then. o_O
 

Trekgirl

New member
Jun 22, 2019
4
HI I have to rite almost everything down and stick it on the table with a piece of sticky tape then it doesn't get moved. Don't expect them to remember anything ITs a bonus if they do. They thing is they wont remember if you get agitated either lol XXX Lots of love
Find a structure that works for you ITs intolerably hard not being able to be as flexible and spontaneous But it will do a little for your sanity of you can.
Guilt and condemnation are your accusers Tell them to get stuffed. X Christine
 

Trekgirl

New member
Jun 22, 2019
4
I'm not very good at this, I am a big reason and logic type of girl and also hate people (especially my mum who is my person with memory problems) to think bad of me so I find this very hard to do. I am also finding I am really not a very patient person especially this last year or so when I think I am pre menopause :eek: I am trying some of the time to follow these suggestions/tips but sometimes, ok probably a lot of the time, I don't think of them until it's too late. Today I tried at times to use them, keeping saying things the same, not getting annoyed with the same questions, then I forgot a bit and corrected her, then tried to apologise and take blame even though wasn't to blame, but then I fell of the wagon again and tried to reason and explain, which I shouldn't have done, but in a way it worked for mum today as I think she seemed to take it more as reassurance that even though she thought I'd not done something in a way me telling her I had seemed to make her feel better.
Today I rang mum and told her I was going over to visit, after I'd done some housework and had lunch and I'd be there for half past two, First time I told her was when I rang her at 9.30 and again when I rang her at 10.44, I said it in the same way a few times and tried to keep it simple.
She rang me back at 10.48 and 10.54 to ask when going and why that time and whether I was having lunch and should she have hers. She seemed to have got it but then rang again at 11.50 and 12.05.Asking the same things and I tried to answer the same way. (I know thats very precise record of times but I can see the times on my call log and it's a bit of a thing with me at the moment looking at the pattern of her calls)
When I got there a little bit before half two I was greeted frostily, 'I wish you'd tell me when you're coming' I said 'I did I said I'd be here by half past two when we were on the phone this morning' 'No you didn't I didn't know when you were coming'. No I thought I'm not supposed to argue so I said 'Oh I'm sorry' but she wasn't happy with that and after a couple more minutes of the same thing and her disapointment in me, I gave in to temptation and said I'm sorry mum but I did tell you, and when she asked me when I told her? I actually quoted the times at her :oops: I said 'I rang you at - & - and you rang me at - & - & - & - and I told you each time I would come for half two after I had done some housework and had my lunch'.
I didn't say it nasty, I did keep my voice calm and quite light, I just wanted her to know I wouldn't do that, but I thought to myself after I finished, that wasn't very good, you're not supposed to try and explain and reason and put her right but actually she surprised me by saying.
'oh right that's ok then, I must not av took it in but as long as you told me and weren't not telling me thats ok. Do you want a cup of tea love?' And was happy as larry then. o_O
 

Grahamstown

Registered User
Jan 12, 2018
1,603
East of England
I'm not very good at this, I am a big reason and logic type of girl...
I am very much the same and I used to go crazy with my husband at first. It’s taken a long long time to get any sort of balance between what I want to tell him and he needs to know. I have reached the point where I only tell him what he needs to know at that moment and not much in advance otherwise he is like your mum getting confused and agitated. I don’t tell him anything that he doesn’t need to know and often my responses will be an um and an ah, which satisfies him but of course drives me crazy. I do slip up but it’s less and less although I know it takes a toll on me. ‘Dementia speak’ is hard even if you try to keep it as rational as possible.
 

Juba

Registered User
Jul 27, 2019
27
Hi. It think I'm with @Grahamstown on this too. Say nothing until you have to and despite meticulous planning - live a spontaneous life! I found that trying to tell my OH things in advance didn't help and I'd quite often be faced with anxiety and agitation along with the accusations of 'not telling him'. Now we just go out for coffee and end up in a whole variety of places - this seems to work fine for us at the moment...... It's horrible feeling like I'm keeping things from him but it seems to cause less anxiety this way.
Don't feel guilty about losing it - cant imagine anyone who doesn't when living with it so closely. Its such a massive learning thing having to rethink how you do everything to try to make things easier - then just when you think you've got the right tactic it all backfires!!
 

silver'lantern

Registered User
Apr 23, 2019
166
'Dementia speak' i like that @Grahamstown
and you are right is is hard.
Don't worry to much relax into it. Its whatever works for you. You will find your way, it doesn't come naturally at all. Even after 6 years I often 'forget' the dementia demon is in the room, especially if we have had a good day. I start talking about different things and soon realise he has glazed over. Or I will get cross over something or correct him and I know I shouldn't have. I think back over the day and cringe sometimes at whats been said/done. But we are human. We have feelings too and its hard. I walk away take a little moment before go back with a smile and 'shall I make a cup tea?' and its all forgotten.
We all find our own way through and what works best. We all have different issues linked to each other like a basket of wool and a kitten..... never ending twists and knots but the link is here.
 

Grahamstown

Registered User
Jan 12, 2018
1,603
East of England
We have feelings too and its hard.
Oh yes it’s terribly hard because essentially it becomes a lonely life with another person in the house, so abnormal as to be a different planet. I hate it, I have lost my companion of so many years with whom I used to talk about everything. It’s over now and the only way I can stop getting cross is to be almost monosyllabic. He is getting so much worse now that he can’t talk in conversation any more. He needs so much help to function that I need help now. I agree with you that we have to find our own way but if it causes you distress it might be worth modifying a bit. Good luck to you in the hard road of caring for someone who has dementia.