Compassionate Communication with the Memory Impaired

[SeaSwallow]

This is really very helpful, spotted a couple of things I can try. Assured me I am starting on the right track.

It’s not always easy to follow to the letter but it does help. I printed it off and still refer back at times.

 

[Kristatos]

This is all very well, but easier said than done. Carers are only human, we get angry, we get worn down by having to answer the same questions over and over again, and so on. Lists like this feel like scolding for not living up to some impossible ideal.

 

[Grannie G]

Lists like this feel like scolding for not living up to some impossible ideal.

Only if you read it that way.

It`s just an idea, a guideline.

It`s often too much to ask any full time carer to follow it to the letter but we as carers have the ability to make changes whereas many people with dementia do not.

It certainly is not meant to be critical or scolding. It`s here to help.

I`m sorry if it upset you @Kristatos

 

[StacyM]

Thanks for re-posting this. I’m new to this site and this whole situation. My husband was diagnosed a few months ago but is in complete denial and gets angry whenever I mention it. I’ll be printing this for myself and his family.

 

[SeaSwallow]

Thanks for re-posting this. I’m new to this site and this whole situation. My husband was diagnosed a few months ago but is in complete denial and gets angry whenever I mention it. I’ll be printing this for myself and his family.

Hello @StacyM and welcome to Talking Point. I also printed this off and still refer to it now and again. It is hard to follow at times but does help.
Anger and denial are quite common after diagnosis and are partly brought on by fear which is understandable.
You might find it useful to start your own thread in the ‘I have a partner with dementia’ forum. There you can ask questions, seek advice or just express how you feel. It’s not just your husband who has to get used to this diagnosis but you and the wider family.

 

[StacyM]

Hello @StacyM and welcome to Talking Point. I also printed this off and still refer to it now and again. It is hard to follow at times but does help.
Anger and denial are quite common after diagnosis and are partly brought on by fear which is understandable.
You might find it useful to start your own thread in the ‘I have a partner with dementia’ forum. There you can ask questions, seek advice or just express how you feel. It’s not just your husband who has to get used to this diagnosis but you and the wider family.

Thanks. I’ve already shared some of this info with my stepson. 😊

 

[tonebear]

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

http://www.ocagingservicescollabora...te-Communication-with-the-Memory-Impaired.pdf

Thank you, have not seen that before, very very useful. Had figured out some of it.

 

[Rachael03]

Also found this very helpful. I had come across some of the tips and advice separately but I do think it's a useful guide and even gives a reminder of what it must be like as the pwd, important to consider life from their perspective in my opinion..it certainly has made it easier for me to understand certain behaviour.

 

[Clodo]

Thank you I had seen this already and it was very helpful.
I know I’m finding things difficult atm I was hoping to start a conversation with someone in a similar position. 🤞

 

[tonebear]

Thanks for re-posting this. I’m new to this site and this whole situation. My husband was diagnosed a few months ago but is in complete denial and gets angry whenever I mention it. I’ll be printing this for myself and his family.

Regarding your husbands denial. My wife is , to a degree, the same or was. I started mentioning dementia when talking to visitors over time more and more and eventually she began to not react and now I can say to a visitor that she has dementia in front of my wife and she does not react at all. Although I do try to put it into second or third place as she has macular and AF. But it's taken a year or so, she was diagnosed in August 2022.

 

[KatFox]

Such an excellent article - thank you so much for sharing

 

[Shelley35]

Wow this is beautiful .
And so helpful all the different situations
And traps that I see myself falling into .
I’ll keep reading it each time I visit and after . Thanks sooo much

 

[reef]

Good to see it in print . It's so helpful to have it exsplsained .I do most of these but sometime get it wrong and then spend a hour trying to calm things down.

Sorry can someone send me the link, I can only see replys ....I'm useless at this

 

[Izzy]

The first post on this thread gives the information -

Thread 'Compassionate Communication with the Memory Impaired'
https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

 

[Grahamstown]

It’s quite a while since I have visited the website and I searched for the information I needed and here it is. Such a wonderful website. I had forgotten all about compassionate communication but really needed it yesterday when my patience with a friend with memory loss was severely tested. I really didn’t know what to do because although she realises that she has lost her memory, frequently can’t recall names of her own grandchildren, words to use in conversation and refers to the fact that she does still have a brain inside her head for example, I don’t think she realises the full picture. So I did the wrong thing and it has been on my mind ever since. It’s a complicated picture which makes me feel even more uneasy because that’s a classic sign of recognising that someone has early dementia symptoms. The problem is that it happens over a FaceTime chat which involves four of us once a week and she simply can’t remember the protocol we had and then a muddle ensues and I have to sort it out because I am the one who knows what to do. This happens nearly every week and I got very irritated yesterday and asked her questions about what to do which clearly rattled her. So she can manage her iPad enough but not when she’s required to do something more complicated. This is very common in people our age but the problem is that she forgets how to get everybody in and every week I spend time troubleshooting. It all sounds so stupid when you try to explain it but I really think that’s dementia for you and I am very depressed about it. As usual writing is a big relief and I shall go back and re-read the article.

 

[SeaSwallow]

Hello @Grahamstown and welcome back to the forum. I am so pleased that the compassionate communication wording has helped you. Don’t feel too bad about being impatient yesterday, we all feel like that sometimes as we are only human. Your friend is lucky to have you keep in contact with her.

 

[Grannie G]

Hello @Grahamstown

Sometimes a group of four face to face is too much for a person with severe memory loss to manage so how they can be on a group face time may be too big a challenge

I hope you will be able to find a way round this. I doubt it will get easier for her

 

[Grahamstown]

Hello @Grahamstown and welcome back to the forum. I am so pleased that the compassionate communication wording has helped you. Don’t feel too bad about being impatient yesterday, we all feel like that sometimes as we are only human. Your friend is lucky to have you keep in contact with her.

I am so happy to see a reply because I didn’t expect it, silly me. Having read the information again I just have to bear with it and sort out the muddle every week as necessary. If only she could remember that I have suggested that I start the session every week it would not be a problem but she can’t and seems to have an impulsion or need to initiate the chat but doesn’t know how to include all four of us. When I can’t be there I still get called although fortunately I know what to do to ignore it and my phone is on silent so it doesn’t disturb whatever I am doing. I can’t talk to the other two people involved because they are in denial in spite of one having lost her husband to dementia and the other with her own health issues. It’s just too hard. I just have to carry on.
@Grannie G she really values the weekly chat having lost her husband with dementia two years ago. It’s up to me to keep it all going because we are a group of friends of 40 years now scattered across the country so it means a lot. Another problem is that to all intents and purposes she is fine and that’s confusing for the onlooker. Her memory loss is very selective but it is becoming more obvious with the same information being repeated week in and week out as well as the other things I mentioned above. I sometimes think it’s just me because the others don’t or more likely can’t mention it. I felt like quitting but that would be painful and pointless for us all. I am recognising the old feelings of frustration and annoyance and just felt helpless, now I feel like I have a handle on the situation.

I also am feeling very sad and realising that I have to follow the advice in the article which confirms my fears about the memory loss being quite severe and not going to improve. Oh dear.

 

[Grannie G]

Hello again @Grahamstown

Does your friend have family or a neighbour who can help her?

 

[Fabian]

Thank you G for posting this guide to a compassionate communication. I will find it soooo useful!