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Communicating with LO with Dementia
Stephanie Z
Posted: Thursday, June 7, 2012 12:17 PM
Joined: 12/15/2011
Posts: 4217


I'm posting this separately so we can just refer to it when new people need information on combative behaviors and communication.

 

Dementia Communication

The communication skills of the caregiver can often mean the difference between a person with dementia being cooperative or combative. Unfortunately many times family caregivers and even professionals find it difficult to practice good communication skills. I think this is especially difficult for family members who have known the person with dementia for all of their lives. They develop patterns of communication based on personalities and the roles people play in their lives (parent, sibling, child, friend etc) When someone has dementia, the roles change (a parent may now need to be supervised for example) and because of the dementia, the communication needs to change as well.

If we, as caregivers, are not careful, our body language (tone of voice, facial expression, the way we carry ourselves etc.) can send a stronger message than what we are verbally saying. So without meaning to, we can create fear, anger or embarrassment even though we may be saying the right things. For instance, a caregiver may be reacting to the thought of having to clean a dirty diaper and on some level may be angry she has to do it. It's hard to disguise this while communicating with the person who has dementia unless she makes an effort. These mixed messages lead to resistance to care and even combative behaviors. Anyone who works with dementia patients needs to monitor tone of voice, facial expression, body stance etc. Talking nicely with an expression of disgust or anger (and maybe not even realizing we are doing it) causes mixed messages. When this happens, the person with AD will go with the body language.

Good communication techniques include:

Approaching the person with dementia from the front.

Making sure the light is on our face so the person with dementia can clearly see us and use visual clues as well as what they hear, to understand what we need them to do.

It's helpful to sit next to the person at eye level. Standing above them is intimidating.

Speak slowly and clearly in short sentences. A sharp voice or fast speech is also intimidating.

Use treats to change moods (if someone is upset or anxious etc.) People with dementia rarely get treats. When we ourselves are upset, most of us have things we do to make us feel better (eating chocolate for example). but dementia patients cannot do this. So we should do it for them.

Treats can also be used as bribes to get them to do something. Ex: "Dad, I have some apple pie for us to eat right after you have your shower."

Treats may be helpful as distractions: EX: "Dad we don't need to worry about what's in that room right now.There is a football game on we can watch. lets go in the living room.

Learning how to communicate well and use distractions and treats will help make caregiving a lot easier and also help the person with dementia to have a higher quality of life with few or no combative episodes

 


bela
Posted: Thursday, June 7, 2012 12:35 PM
Joined: 12/15/2011
Posts: 4122


I love this and I believe I read it some time ago; I have been talking to my mom the way you describe and this just confirmed that what i have been doing has been right.  

I always face her, smile and am relaxed.  I did learn the treat thing however.  Never thought of it that way.  So now I have a smorgasboard, albeit small, of treats so she can pick.  although she's not really able to pick herself.  I sort of present the thing that isn't served for lunch at NH.  Ex; they served a banana cream pie the other day so i didn't offer the chocolate cream pie that i bought for her.

Thanks for reposting this.


MissScamper
Posted: Wednesday, June 20, 2012 5:01 PM
Joined: 12/14/2011
Posts: 237


ttt
DZ
Posted: Wednesday, June 20, 2012 5:04 PM
Joined: 12/7/2011
Posts: 1736


bela wrote:

I love this and I believe I read it some time ago; I have been talking to my mom the way you describe and this just confirmed that what i have been doing has been right.  

 

I always face her, smile and am relaxed.  I did learn the treat thing however.  Never thought of it that way.  So now I have a smorgasboard, albeit small, of treats so she can pick.  although she's not really able to pick herself.  I sort of present the thing that isn't served for lunch at NH.  Ex; they served a banana cream pie the other day so i didn't offer the chocolate cream pie that i bought for her.

 

Thanks for reposting this.

 



momtofour
Posted: Thursday, June 21, 2012 10:24 PM
Joined: 6/21/2012
Posts: 36


This is very helpful, thank you so much.

 

Any tips on how to calm a loved one on the phone when they can't see your facial expressions?

 

We moved my dad into assisted living a week ago.  He is agitated and upset at night, wanting to leave, packing his things.

 

The staff called me tonight to speak with him due to his extreme agitation.  He said his doctor is fired, he is leaving, not discussing it and that is final.  Very upset.

 

By the grace of God ( I do believe with all of my heart) his Pastor stopped by and distracted him from his rant. 

 

Will this get better?  Will he settle into his new home and be ok or will this be a fight from here on?????

 


bela
Posted: Thursday, June 21, 2012 11:28 PM
Joined: 12/15/2011
Posts: 4122


Thanks Step, I am a licensed mft (therapist) so i know how to be gentle and work with  people; i will copy and paste your tips because it is worth having reminders.  If i too approach mom from the back, which i sometimes have to do when she is headed for the alarmed door i take hold of the wheel chair and say hi mary then i touch her shoulder lightly and as i walk around to the front i am sliding my had down her arm till i reach her hand and i smile and tell her how much i love her.
Iris L.
Posted: Sunday, July 1, 2012 3:40 AM
Joined: 12/15/2011
Posts: 17932


ttt for the new members.

Iris L.


hercules
Posted: Thursday, July 12, 2012 7:52 AM
Joined: 12/19/2011
Posts: 146


Thanx for the reminder.  NEEDED IT ! ! ! !
rose2012
Posted: Thursday, July 26, 2012 6:45 PM
Joined: 7/26/2012
Posts: 20


Stephanie,

Thanks.  This is so helpful.  Especially what you said about the disconnect between words and body language and how the person with D will go with the body language.  I'm sure I've been guilty of that.

Rose (used to be Lily1972 but my logon got messed up)


Angela65
Posted: Thursday, July 26, 2012 7:21 PM
Joined: 12/20/2011
Posts: 276


Thanx 4 all your help Stephanie, my mom is in the mid6th stage of ALZ., and it is very important 2 watch your body language i have a habit of standing with my hand on my hip and lean against wall, counter etc. this we discovered irritates my mom it makes her mad, so habit i didnt ever really notice myself i have 2 be careful and trying 2 break that habit. at times if we say Hey Mom or addresse her as mom she will turn on us aggressively sometimes and tell us in not always very nice words that she isnt our mom. My sister is also a nurse trauma er nurse for 20yrs. so she was able to get us in a class on ALZ.n Dementia, it was helpful, unfortunately my mom does suffer from some psychosis,she definately has delusions and hallucinations this does make it scarey sometimes. but we want to keep her on the lowest doses of meds. she does still have some rreally good days we just addresse her by her 1st name thats a hard1, Im 47 and my whole life i have called her mom i still slip up and addesse her as mom but we both do . I try never 2 cry n front of her but my heart feels broke at times, i would get irritated with my sis to figure out how 2 fix it .But she said her world in nursing is totally different then if she had worked with elderly . so she also is learning. JUST WANTED 2 THANKYOU for being here for all of us.They say there are angels who walk among us i believe that now after being on this sight.
aschleppi22
Posted: Wednesday, August 15, 2012 6:27 PM
Joined: 8/15/2012
Posts: 11


Thanks this is very helpful. I have been in healthcare my whole life and still needed these suggestions/reminders.
ADandHFA
Posted: Wednesday, August 15, 2012 8:20 PM
Joined: 7/26/2012
Posts: 90


Momtofour,

 

Sounds like he's sun-downing.  My MIL has been doing that for years.  During the day, she's mostly happy with her ALF.  At night, she's agitated, paranoid, reorganizing, packing, unable to reason, calling us all to take her home . . .   

 

We call it Night Mom and Day Mom.  They are 2 very different people.  At night, she's restless, delusional, and extremely frustrated.  Daytimes are very different. 

 

Her ALF does not have a memory care unit, but they are well-versed in Alzheimer's disease, so they're pretty good at redirecting her at night, reminding her that all the other residents are sleeping, etc. . . .

 

We've had to make the tough decision to just not answer the phone when Night Mom calls.  We let it go to the answering machine.  If it's really important, we call her ALF and try to coach them through it.  Otherwise, we wait until daylight to speak to her, and often, by then, she's completely forgotten what upset her at night.  Her OTHER children take her calls at all hours, but we don't.  

 

Her doctor tried her on Benadryl at night, but it hyped her up.

Then, he tried Aricept, but it gave her hallucinations.

 

So, for now, she's just not sleeping at night.  We haven't found the answer yet.  But, at least we know why she does what she does when the sun sets.


Years of giving care
Posted: Wednesday, January 9, 2013 8:19 PM
Joined: 11/25/2012
Posts: 199


Yeah, let's put this up at the top of the board again...
Lorita
Posted: Wednesday, January 9, 2013 8:28 PM
Joined: 12/18/2011
Posts: 14070


Good evening, everyone, 

 

I usually don't post on this forum but was just reading about sundowning.  Does sundowning always occur late in the day and involve being unable to sleep? 

 

My husband, the last five days around 1 p.m. has gotten agitated and wanting to go somewhere.   This lasts until about 6 p.m.   Could this be a form of sundowning?  This happened today and he took off and walked over 1/4 mile.   I finally got him home and about 6 p.m. he calmed down and is now watching TV.   Just wondering. 


Years of giving care
Posted: Friday, January 11, 2013 7:03 PM
Joined: 11/25/2012
Posts: 199


I think maybe you should put this up as a new post so people will see your question.  Some who've read this leading message might not see your question.
SunnyCA
Posted: Sunday, January 13, 2013 10:13 AM
Joined: 2/14/2012
Posts: 1752


Hi, Lorita.  "Sundowning" can happen any time of day.  It is a period of agitation that occurs at the same time every day.  It is not a sleep disorder.

 

http://www.alzcompend.info/?p=268

 

"Studies that monitored agitated behaviors throughout the 24-hour day have repeatedly found that roughly the same number of patients exhibited cyclical agitated behavior in the early morning as those exhibiting it in the late afternoon/early evening. One conclusion was that disruptive behaviors which occur in the evening simply are noticed and reported much more frequently because they have a greater impact on caregivers. By the end of the day, the caregivers (whether at home or in a nursing facility) are too tired and irritated to cope with the loved one’s behaviors as easily and effectively as they could when they were fresh and rested, and are also likely to be distracted by shift changes, family returning home from work/school, and evening chores such as preparing/serving dinner." 


Scared
Posted: Sunday, January 13, 2013 2:51 PM
Joined: 1/1/2013
Posts: 1


I try to be as patient as I can, but my husband has had a sudden, dramatic change in his behavior, and I am not coping well.  I'm having anxiety attacks and have gone to the doctor for medication.  Every evening for the past several days, he starts talking about going back to the house we stayed at last night or last week or 2 weeks ago.  We moved into this home 9.5 mos ago from Knoxville, TN.  We sold that home to move here.  We haven't been to any other house since the move.  All our belongings are here.  There is no where to go and nothing to get. Last night he was really angry with me because (1) I started crying when he kept harping at me about the other house and especially when (2) I wouldn't (actually couldn't) write down the address of this house he's talking about.  I just don't know what to do.  I called the Alz Assoc hotline the other morning at 5am because I hadn't slept for hours and I had to talk to someone.  The counselor was very kind, gave me some advice, answered some questions.  Still, I have to face the same thing every day.  I know there are a lot of caregivers who are dealing with things like having to bathe, and shave and feed their loved ones, and at this point I don't.  He's capable of doing all this himself; it's getting him to shower and shave that's the problem.  This argumentative behavior is scary.  I have spoken to his neurologist when we were at the appointment last week, but he hasn't offered much of a solution.  He did prescribe some medicaiton to give my husband, but it doesn't stop the problem from starting.  I just don't know what to do next and I am scared.  I have no family here, and being so new to the area, I don't really have any friends I can call on. I don't know what the next steps are, and I'm just feeling overwhelmed.  If anyone has any suggestions, I'd sure appreciate your help.  Thank you.
SCH
Posted: Sunday, January 13, 2013 3:13 PM
Joined: 10/27/2012
Posts: 362


Dear Scared, 

Anytime there is a sudden change in behavior, you should eliminate physical causes. A UTI is one of the most common.  It can really throw them for a loop! When my mom had one, I had no idea.  When I took her to the doctor, he sort of fussed at me for not realizing she had one. Since I have never had one, nor was I educated on how it affects the dementia patient, I did not know what to look for. Boy oh boy, I do now!!!! 

 

Since I have been reading on these boards, I know more and I am able to trouble shoot problems that I have not encountered.  It really helps to feel a little more in control. You might want to repost your question on your own thread so that more people see it and respond. If your husband gets aggitated to the point of being angry, your doctor should be able to adjust or prescribe meds to help.  If he doesn't, get a second opinion.  Anger and aggitation can lead to behaviors that compromise safety.  

You are not alone.  We are here for you.

 


SunnyCA
Posted: Sunday, January 13, 2013 6:49 PM
Joined: 2/14/2012
Posts: 1752


Hi, Scared.

 

I second what SCH said ... take him to Urgent Care to check for a urinary tract infection (UTI) or some other infection.  And do feel free to start your own threads, so more people will see them and answer you.

Read the article on sundowning I referenced above -- agitation that is triggered in the evening can be caused by many things.  He may be having trouble seeing well in the evening and may not recognize your new home, and more light may help.  Alzheimer's patients typically have problems with vision, a symptom called "visual agnosia".  In fact, that is often the first symptom to develop, even before memory problems.  Shadows may be making your home look strange to him.  He may be reacting to reflections off glass windows (try closing all curtains before sundown), or mirrors.  

Since it's happening at roughly the same time every day, there might be another trigger.  For example, there may be some sort of noise that's bothering him -- traffic noises from neighbors coming home from work.  Or perhaps you've started watching a TV show that upsets him.  Maybe you are changing your clothes and look funny to him.  We have to become really good detectives.  See if you can't figure out what is actually bothering him.

His memory is no longer working the way yours does.  The memory of the house he stayed at "last night" or "last week" may be one he stayed at months or years ago, but the memory is fresh and real to him.  His mind can't tell him it's a very old memory.  He's probably doing what's called "confabulating".  See:
http://www.alzcompend.info/?p=293

Do not argue.  Not ever.  It's unproductive, it will upset your husband, it will upset you.  Instead, distract and redirect.

Ask him to tell you about the house -- what it looks like, which room is his favorite, etc.  Ask him why he wants to go there instead of being where the two of you are now.  Ask him who else stays there.  Use his answers to (a) help you figure out what house he's talking about and/or (b) guide the conversation to safer topics other than that house -- other rooms or houses or places he likes, things that the people he mentions have done that were funny or thoughtful, etc.  Come up with any sort of plausible explanation as to why the two of you can't go to that house -- the car is broken and you'll take him after it's fixed, the furnace at that house isn't working and it's too cold to stay there.  Tell him you're hungry and dinner's almost ready and the two of you should eat first, before you go there.  If he likes being in the car, take him for a drive and talk about anything you can think of to distract him, maybe treat him to a hot chocolate somewhere -- hopefully, he'll have forgotten about the house by the time you get home.

And try not to get upset.  Stay soft-spoken and loving, smile at him, give him a hug.  Something may be frightening him, and your love will help him feel safer.


Blue Hawaii
Posted: Monday, February 4, 2013 7:02 PM
Joined: 2/4/2013
Posts: 43


Thank you for posting this Stephanie Z.
1chibarb
Posted: Friday, February 15, 2013 6:24 PM
Joined: 12/26/2012
Posts: 52


Reading your story is like writing it myself.   Everything about personality change is so scary.   its like you walk on eggshells wondering what it will be that sets them off.
For me... its my Father... my gentle meek Dad that everyone has always loved... would do anything for anyone Dad... The same Dad that told me he wouldn't give me any trouble Dad.... The same man that only had to raise an eyebrow to scold me... 
The same man that now tells me he thinks I'm lying to him... He isn't as "bad" as they say Dad... The same man that has screamed at me and shook his fists because..."I can take care of and can stay by myself!" Dad...
I'm sorry for what you are going through... Please know... you aren't alone... Praying for you and your situation... 

one daughter
Posted: Saturday, February 16, 2013 12:53 PM
Joined: 1/30/2013
Posts: 1980


Wow 1Chibarb I think we have the same dad
worthington
Posted: Monday, February 25, 2013 4:46 PM
Joined: 1/7/2013
Posts: 71


Wow this has been very eye opening. My mom is a very soft hearted person, and wants to please everyone. Sometimes life gets so busy trying to get my son to school, going to work, doctors apt, ect. ya just  don't realize how ya come a crossed. I'm sure I have given wrong signals. This has very good info.  Thank so much.

 

Lori


BLONDE
Posted: Wednesday, October 23, 2013 12:43 PM
Joined: 10/9/2013
Posts: 169


OMG - I am a VERY facial expression person!  I can't help it.  If I am aggrevated at work it is really hard for me to control my facial expressions.  This might be part of the problem, but my father lives in a NH and has since 2012.  His combative behavior has just started up again in full force since he took a nasty fall and got a compressure facture in his back. 

 

The problem with any home is that there are 3 shifts and numerous nurses and aides and I am sure each one has a different way of handling the patients.  You think they would know how to handle dementia patients especially where he is now because he is in a locked dementia ward. 


PttySec1
Posted: Wednesday, October 14, 2015 1:12 PM
Joined: 10/12/2015
Posts: 1


Hi. I am brand new to this site. My father was extensively tested by a Psychologist that specializes in Senior Care and was found to have significant impairment in verbal recall skills, executive functioning, visual spatial organization, non-verbal reasoning, visual tracking, conceptualization skills and problem solving skills. She diagnosed him with progressive dementia syndrome, probably dementia of the Alzheimer type. But now I do not know what to do. This was a year ago. He has occasional mood swings and he thinks we steal things from him... Should I follow up with a neurologist? His family doctor is no help
ButterflyWings
Posted: Sunday, April 24, 2022 2:04 AM
Joined: 12/11/2018
Posts: 1024


ttt. For the new members.
emmamom
Posted: Sunday, April 24, 2022 2:52 PM
Joined: 4/24/2022
Posts: 8


This is very helpful, thank you so much really
Charlemagne
Posted: Monday, April 25, 2022 2:38 PM
Joined: 4/24/2022
Posts: 4


I’ve read Stephanie Z's Caregiver Information for New Forum Members. I’ve read Stephanie Z's Communication Skills for Caregivers. I’ve read Naomi Feil on Validation. In the past month, my wife has gone from not knowing my name to not knowing who I am. I say I’m your husband. She says not you’re not. I don’t know how to validate that. She woke up this morning and said: “I have nobody to talk to.” What do I do?
 
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