Apply Now
RSS Feed Print
Communication Skills for Caregivers
Stephanie Z
Posted: Monday, November 2, 2015 9:28 PM
Joined: 12/15/2011
Posts: 4217


This post is repeated several times a year for new members or caregivers who need to review the dementia communication guidelines

People with dementia often have problems with communication. They may not be able to let caregivers know exactly what they want or need. On the other hand, they also will not be able to understand what you are telling them, or what you want them to do. Adding to the frustration, is the PWDs inability to understand WHY.  This often leads to the PWD  feeling  threatened in some way and responding with anger, agitation, fear and combative behaviors.   

   There are, however, many things that can be done to reduce the negative response from the PWD.  Try the suggestions below:

  Approach the person with dementia from the front being careful not to startle them.

If possible, sit at eye level. Standing over someone is intimidating. However, do not "scoop down" in front of them. If they are frightened, they may kick out at you.

Monitor the body language of the person with dementia. THEIR body language can broadcast anger, fear, hostility, approachability, friendliness and a host of other emotions. If the body language is negative, do not approach. Give the person a little time if possible and return later.

Monitor your own body language. You may be giving mixed messages without realizing it.
Don't let your personal feelings show. Use positive facial expressions and tone of voice, especially if you are preparing to help with personal care.

Reintroduce yourself each time you approach the person if they are not sure who you are. They have short term memory loss and may not remember you.

Monitor the environment around you. Turn off the TV and avoid other noises that might frighten or distract the person. If there are, move to a quieter area.

Make sure the light is on your face so the person with dementia can see you and use visual clues to help them understand what you are saying.

Speak slowly and distinctly in short sentences. Avoid sharp voice or rapid speech.

Explain what it is you wish to do for or with the person in simple terms. This is extremely important to help avoid combative behaviors. (What we, as caregivers, may consider "combative behaviors" could be defensive in nature.

Avoid using pronouns such as he, she. Use the names and relationships such as "Jane, your daughter."

Allow extra time for a response.

Make sure the person is allowed to make choices as long as they are able. If choices become difficult (can't decide or changes mind frequently) use "guided choices". This means give your LO a choice between two good options, so there are no "wrong answers".  If they can't do this, offer one choice; "Mom would you like apple sauce?" Imagine how your quality of life would decline if all your decisions are made for you. To avoid a loss of independence and quality of life, encourage some choices as long as your LO is able.

 There will come a time when the person appears to no longer be able to do "complex tasks" such as brushing their teeth. This is because there are many steps to doing this and the person may not know how to start, or forgets some of the steps. Breaking the task down helps. Ex.  "I am going to help you brush your teeth. Lets take the cap off the toothpaste. Now turn on the cold water. Wet your toothbrush. Put the toothpaste on the brush"  etc. etc.  Trying this with tasks a person may see to have forgotten, can help them be more functional for longer periods of time.

Remember that once you start doing something for the person with dementia, they will loose any skills connected with the task. Putting toothpaste on their brush for example. Be patient and allow them to try. Don't take over unless you are convinced they can no longer do it. It may take longer for you, but it is a quality of life issue for them.

 Never say no or argue with the person who has dementia. Use Validation, "fiblets" if necessary, and distraction.  It is easy to forget that things which are simple and clear to us, may make sense to someone who can no longer reason things out.

Use validation to let the person with dementia know you understand their feelings. For instance, after asking about going home.  "I know how much you miss your house." Then use a fiblet. (example)"We can't take you home right now because there was a gas leak and the workers are trying to fix it" Then use distraction. "I just remembered, your favorite program is on now, lets watch it."  (Good reason to record a few programs which can be used over and over)

Distraction in the form of special treats can be used to change a mood, or as a reward for allowing you to provide care. For instance, if someone with dementia is agitated or angry about something, offer a treat that they like. A small piece of chocolate works well. I used to have my staff keep chocolate chip cookies and Hershey's kisses in their pockets to use when residents balked or became upset when they needed to be toileted or changed. A small treat can change their mood. It's hard to be angry with chocolate in your mouth. Remember that people with dementia can only focus on one thing at a time, and the pleasurable they get from one or two chocolate kisses or cookies will keep them occupied while you care for them.

If the person you are working with appears to be agitated and/or angry, (fists clenched, angry expression) leave them alone for a while and reapproach later.  Do not argue with or further upset them. If you feel you may be in danger at some point, remove all of the dangerous items from their reach (knives, scissors, guns, etc). Make sure you keep a cell phone with you at all times. You should have 1 room in your home where you can lock yourself in while you call 911 if you are physically threatened. Once they are called, responders should take the person to the ER for assessment and transfer to a psychiatric facility for treatment.

 

  What to do when the person with dementia asked about a LO who is deceased.

At times a reminder of the death is helpful to your LO as long as the news is not a shock leading to upset and grief.  Sometimes people with dementia will ask over and over about a LO who has passed on, crying and grieving as if they heard this news for the first time. Reminding them of the death each time they ask, can be cruel as the knowledge will upset them, but they will forget and ask again. It's better to say something like: "Susan is not here now." and then validate their feelings about the person. "I know you loved to have her come for a visit."  Distraction can be used by spinning the conversation in another direction. "Susan had a really cute dog. Did I tell you about the dog I saw outside the supermarket today? Oh, that reminds me, I bought some pie when I was there. Would you like some now?"

Lastly, don't forget to imagine yourself in the place of the person who has dementia. How would YOU feel in the same situation. How would YOU like to be approached and treated. Use common sense to figure out the best way to to handle each situation.  

Hoping this helps,

Stephanie Z

 


Stephanie Z
Posted: Thursday, June 9, 2016 9:16 PM
Joined: 12/15/2011
Posts: 4217


Hi Nadine,

     Many families opt to tell their LO one time that a family member has passed. If it is a close family member and the person with dementia grieves and cries, once is enough. They will soon forget and may ask about the person again and again and again. Telling them each time would put them through a lot of unnecessary pain. It's much better to simply say something like "he's not here right now. I miss him too." or use a fiblet:  "He's away right now. You'll see him soon." then change the subject to something that will take their mind off the person who has died.

Hope this helps,

Stephanie Z


KellyJ
Posted: Friday, June 10, 2016 9:19 AM
Joined: 5/7/2014
Posts: 270


Thank you, Stephanie that is very helpful.  I have learned so much from this group. 

 Nadine, My MIL constantly asks about her mother when we visit.  She feels she couldn't be dead because she doesn't remember the funeral. Her mother passed away over 35 years ago.  She doesn't get upset when we tell her gently that she is gone. Her mother was a smoker so then she talks about cancer and how bad smoking is for your health.  She didn't have a close relationship with her mother so maybe that helps.  She has been asking for her phone number too.  She seems to like to go over the details of where her mother lived at the time and that seems to bring back other memories and the subject kind of changes itself. 

Tears did come to her eyes when she asked about my husband's father, her ex-husband. They had been divorced for decades and both had remarried, and he has been gone for years. That day it was news to her.  In the future we will probably tell her that he is doing well.  She also has a son that passed away.  He was absent from the family for many years before he reappeared and shortly died thereafter. When she asks, we will probably say we haven't heard from him.  Both statements are true.  


Mare16
Posted: Monday, October 17, 2016 2:48 PM
Joined: 5/4/2016
Posts: 9


Dear Stephanie, 

You rock! I wish I could hire you to take care of my mom when she needs a nurse!

Keep posting, you are awesome!

Best Regards,

Miriam


birdy
Posted: Tuesday, November 1, 2016 5:57 AM
Joined: 12/15/2011
Posts: 181


perhaps agencies should train their people all what you said before allowing them in homes
Stephanie Z
Posted: Friday, February 17, 2017 10:38 AM
Joined: 12/15/2011
Posts: 4217


Sunshine,

     The difference between your grieving process and your mom's is that for you, the grief will subside over time. Your mom, however, having memory loss, will hear the news of his death as something new each time. Yes it may fade over time, but why put her through this. Simply telling her "he is not here right now" and allowing her to talk about him for a while is a good way for her to begin to distance from him and rely on her memories of their earlier life together.

   This is something I feel strongly about, and my hope is that you will change your mind about telling her over and over.

Stephanie Z


feudman
Posted: Friday, February 17, 2017 12:06 PM
Joined: 6/5/2014
Posts: 1590


Sunshine, Stephanie's advice was for a LO with memory loss. You had indicated your mom had memory loss, but not that it is evidently not the typical "last in, first out" variety most AD folks present. If she has dementia, it sounds as if it's not AD. 

My wife has final stage FTD, but most folks we encounter treat her as if she won't remember anything (because most people assume dementia = AD). Actually, her short term memory is still fine, but earlier memories are gone. Does that sound more like mom?


mimorris
Posted: Saturday, February 18, 2017 2:04 AM
Joined: 2/18/2017
Posts: 1


my grandmother has Alzheimer's and constantly asks about her mother,siblings and husband who are all deceased and have been for quite some time. at first we were telling her they had passed away, now we almost try to avoid that subject. also she lives with her son, but many times thinks he is her husband, and gets upset saying she thinks he has a girlfriend, and gets aggravated when he is doing stuff outside or with friends because she thinks its her husband and it is making it really hard for my uncle to care for her because of what seems to be resentment. please help.
feudman
Posted: Saturday, February 18, 2017 12:05 PM
Joined: 6/5/2014
Posts: 1590


Hello mimorris, and welcome. You will get more response if you start a new thread using the green box above. 

There is a lot of helpful advice here on dealing with these issues, and they are quite common. You might start by searching Naomi Feil and/or Teepa Snow links. You will learn how to validate and redirect, but also when to use "Fiblets." A basic rule is to never argue. Always strive to be calm and reassuring. There are some great books for dementia caregivers. "The 36 Hour Day" is a good one to start with. You have found a very helpful, supportive place, come often.


Mimi S.
Posted: Sunday, March 19, 2017 5:52 PM
Joined: 11/29/2011
Posts: 7027


Welcome to our world Mimorris,  We're so glad you found us.

Telling that someone died. Once there is minimal short term memory, tell once and then wing it with whatever works.It is cruel to put them in the grieving process more than once.

Especially if son looks like dad, the mistake is common.  From your library do ask for any book by Naomi Feil with the word Validation in the title.  As the disease progresses, the PWDs  concept of time retreats. So, when she sees her son, she assumes it's her husband at that time period. Feil gives you help on how to deal with it.


chrisp1653
Posted: Tuesday, April 25, 2017 1:39 PM
Joined: 1/23/2017
Posts: 1321


Stephanie, I particularly liked your statement about speaking slowly and distinctly using short sentences. It clicked with me because I remember using that technique when I was working as an automotive technician. We were , at that time, getting a large influx of immigrants from Russia, and these , along with the Hispanic population , caused a problem for me, because I needed to communicate with whoever it was that brought a car in for repairs.

What I discovered was that most people from other cultures have at least a smattering of English, and most of the time if I went slow and used simple sentences, we could understand each other.

I sense that for some PWD's, we need to understand that they speak a different language than we do, so often, using the same speaking techniques can allow us to communicate. At least, enough to that we can both understand.

This brings a smile to my day, and further educates me as I journey along the path of being ( I hope ) a good caregiver .

Thanks for the great advice.

 

Chris


Moment in time
Posted: Wednesday, April 26, 2017 1:46 PM
Joined: 4/25/2017
Posts: 1


Hi, If someone is not able to retain the information and keeps asking, it is like they are hearing it for the first time and may go through the grieving process each time. "Therapeutic fiblets"are used to help someone who's reality (their reality, not yours) may be causing them anxiety or agitation. It is hard to try and orientate someone if what they are believing is real to them. Just think if you really thought your mom was waiting for you and someone kept telling you "No, she is not, she passed away". You would not believe that person and may cause more anxiety, agitation and pain as you really believe your mom is waiting on you. A "therapeutic fiblet" would be something like, "Your mom called and she will see you another day" instead of, "Your mom passed away", "Don't you remember"! Therapeutic fiblets just decreases the worry of their reality for that moment in time and lets them know you are agreeing and validated their feelings and reassuring them that everything is okay, again, even if it is for that moment in time. It also really depends on the person and how much cognitive retention time there is. I find arguing and trying to orientate is not useful when the retention time is brief. Getting into the persons world and just going on journey with them and not creating anymore confusion by trying make them live in my reality is best.
punkie228
Posted: Sunday, October 29, 2017 10:45 PM
Joined: 10/22/2016
Posts: 81


Stephanie

I agree with most of your information but will add some thoughts on speaking of Los who have passed on.  My biggest learning over the last three years with my MOM on this journey has been I NEED TO LISTEN TO HER and READ HER BODY LANGUAGE  just like I did when my kids were young.. There are moments when my Mom asks about her Mom who has been dead for 35 years when redirecting is the best solution and there are moments when she  asks directly  Is my  Mother Dead? or Says my Mother is dead isn't she...in those times I am honest and answer her inquiry.  I know that an hour  from now she will not remember but  when I can give her the moment of respect and answer her inquiry honestly I do ....Her response in these honest times is usually ok that explains why she hasn't written me or I thought so but I can't remember her funeral  We then turn these moments into a conversation on everything she remembers about her Mom and her childhood.......

My Mom also can at times suffer from sever bouts of anger and in those moments she  will insist she is leaving  to go live with her MOM and no amount of distraction or redirection sways her from this insistence to call or go see her MOM..Her anger builds to the point of throwing things In those moments as hard as it is  I have told her  calmly that her MOM has passed on and have even gone as far as showing her the funeral books..this truth while making her sad for her switches her anger to sadness  ...the sadness allows us to comfort her , she reviews the names in the funeral book and begins to talk about the people and her memories.. My point is there is no one size fits all way for our Los, this journey is unique to each person and we as caregivers need to LISTEN TO OUR LO and use all the tools available to customize how we communicate always keeping their needs as the guide


Stephanie Z
Posted: Monday, October 30, 2017 12:52 PM
Joined: 12/15/2011
Posts: 4217


Punkie,

     You are right. I was not clear in what I was saying. I was speaking mostly about people in late stage 5 or stage 6. I have rewritten that part of the communication skills.

By the way, the communication skills are a compilation of  things I learned from my residents over the years, working as an RN doing dementia care,  and communication skills we selected to include in training materials when I worked with the Alzheimer's Association. I hope they are helpful, especially for new caregivers.

Thanks for the post.

Stephanie Z


Rockym
Posted: Monday, October 30, 2017 6:38 PM
Joined: 1/17/2016
Posts: 939


My mom asks about my dad, her brother and her sister.  Sometimes her parents too.  Like Nadine said, I am her memory.  Right now I tell her they passed and she asks when.  When she talks about her mother or father, I tell her to think about it since she is 85... how would that be possible for them to still be around.

It does not bother her and so I repeat to her the same stories.  If she got teary or upset, I would know it was time to fib.  When she asks, if I don't have the patience, I tell her straight up there is only you and I mom.  Everyone is going except us.  Let's not go through the dead person parade and then I change the subject.

I overheard a caregiver tell another resident her husband was dead and the look on her face was awful.  I am sure it felt like the first time to her.  I wanted to counsel the caregiver, but I didn't feel like it was my place.  It was sad.


annie789
Posted: Monday, October 30, 2017 6:51 PM
Joined: 11/19/2015
Posts: 1004


Thanks so much Stephanie for all the time you take to help all of us going through this horrible disease.  I have copy and pasted it into a doc so that I can save it.

Annie


gubblebumm
Posted: Saturday, September 22, 2018 12:38 PM
Joined: 7/12/2017
Posts: 1774


While I love the info these posts just make me feel like a failure, like crappy and guilty ALL the time, you weren't perfect in your communication so its your fault!  That's what these posts do for me.  I know that is not what is meant, but it implies that we humans who are tired, crabby, frustrated have to feel awful for not being perfect in each interaction.
Stephanie Z
Posted: Sunday, September 23, 2018 4:51 PM
Joined: 12/15/2011
Posts: 4217


gubblebum, I have moved your concerns to another post so others can offer some support and help.
Stephanie Z

jfkoc
Posted: Sunday, September 23, 2018 6:03 PM
Joined: 12/4/2011
Posts: 20765


I think we all feel that we have failed. Sometimes often, other times rarely but the fact remains constant. We are the ones left with the capacity to change through learning.

I am grateful that others have shared their lives with me. What they have learned so that their experience have the chance to help me What I learned enabled me to continue sometimes only to the next day.

 


jfkoc
Posted: Sunday, September 23, 2018 8:09 PM
Joined: 12/4/2011
Posts: 20765


The original post is from 2015. Until today the last reply was a year ago. What is going on?
Stephanie Z
Posted: Monday, September 24, 2018 10:11 AM
Joined: 12/15/2011
Posts: 4217


jfkoc,

     This post is part of "Caregiver Information for New Forum Members". When I joined the forum, I asked about becoming a peer volunteer. Because I am not a family member, but have been an RN with a lot of dementia care experience, and years of dementia training for the Alzheimer's Association, I was asked to help out with developing this type of information and researching articles, etc.

     Since dementia care communication skills are so important, I repost them several times a year. This is why the original post is 2015.  There are over 10,000 views which tells me that caregivers want this information and I hope it helps them.

Stephanie Z


jfkoc
Posted: Monday, September 24, 2018 1:47 PM
Joined: 12/4/2011
Posts: 20765


I do understand that there are posts that you bring forward. They are a  "staple" here and we are all the better for seeing this over and over again.

My question was how/why the negative reply to a thread that was dormant for a year. Maybe I am missing something. 

It really does not matter...just thought it odd.

 


Veterans kid
Posted: Monday, September 24, 2018 1:55 PM
Joined: 10/17/2014
Posts: 1239


Stephanie, thank you for posting this.   I remember reading it three years ago when you first posted it. It’s always good to bring these type of informational  threads to the top, because a lot of people don’t go back in the archives to search out posts or information.   I’m sure there are many that read but don’t post, and also new members, people may not realize you can archive. You and so many others were so very helpful and kind when I had questions. If I had questions, I knew I could ask,  that there were people on this board who would always be caring and mindful of other peoples feelings.

I have never seen you lash out or be mean to anyone,  your posts are always informational, educational, and written with compassion. 

 Thank you for continuing to be there for those that choose to try and become a better caregiver and learn as much as they can.  It’s such a scary journey, and the help from others, is beyond value!  I know personally, I never felt like you or anyone else were trying to hurt my feelings, or out to get me, or saying that I’m a horrible person and or caregiver.  There is no such thing as a perfect caregiver, or person for that matter.  We have in common, this hateful disease, and I’m grateful to you and others who continue to educate to help us become better and have a better understanding on way to try and help our LO.  

Thank you, Stephanie, for being YOU!  

Hugs and prayers, 

Julie

Always be VK 


citydock2000
Posted: Monday, September 24, 2018 1:57 PM
Joined: 9/7/2017
Posts: 794


I know there weren't any replies recently but Stephanie regularly bumps this up to the top (not sure how, technically) so new people see it.
jfkoc
Posted: Monday, September 24, 2018 2:22 PM
Joined: 12/4/2011
Posts: 20765


No, it show when a reply bumps a thread. Stepanie's posts always start out as new.

Someone dug back and started commenting. Someone far more adept at searching the archives than I and I have tried any number of times.


citydock2000
Posted: Monday, September 24, 2018 2:42 PM
Joined: 9/7/2017
Posts: 794


WEEEEIIIIIRD.
jfkoc
Posted: Monday, September 24, 2018 3:10 PM
Joined: 12/4/2011
Posts: 20765


Yeah....I can understand making the effort to find a helpful post but not to bring up a very old one that was upsetting to me.

 


Stephanie Z
Posted: Tuesday, September 25, 2018 11:51 AM
Joined: 12/15/2011
Posts: 4217


Anyone can bring up one of their OWN posts, but hitting "edit" which only shows on posts you have written. So Edit, then Post, will bring them forward.

Stephanie Z


jfkoc
Posted: Tuesday, September 25, 2018 12:32 PM
Joined: 12/4/2011
Posts: 20765


did not know that...I just remember seeing "ttt"

thanks


Ed1937
Posted: Sunday, April 7, 2019 4:48 PM
Joined: 4/2/2018
Posts: 5736


Thank you, Stephanie. I have been on the forums for a little over a year, rarely missing a day. Ninety percent of the time or more, I frequent the Spouse/Partner forum. If you don't mind, I'd like to copy and paste the original post to that forum, or maybe you would want to do that yourself. This is excellent information everyone should see!

My wife was also an RN, and was diagnosed last year with Vascular Dementia. The part of your post about allowing them to do what they can by themselves hit home with me. My wife has a terrible time with the remote, and I find myself just taking it from her to find what she wants to see on TV. That just now became a thing of the past unless she asks for help (which she will do). Again, thank you.


Ed1937
Posted: Wednesday, April 10, 2019 10:56 AM
Joined: 4/2/2018
Posts: 5736


Stephanie, I hope you don't mind that I copied your original post to post on the Spouse/Partner forum, while giving you credit for it. I thought it was an excellent resource for everyone, I didn't want them to miss it. This thread is probably buried pretty deep by the time you read it again, so I took the liberty to copy it. Hopefully you're OK with that.
Stephanie Z
Posted: Thursday, April 11, 2019 4:47 AM
Joined: 12/15/2011
Posts: 4217


Hi Ed, No problem, I put this together for everyone and try to remember to bring it to the top every now and then. Thanks for doing that.

Stephanie Z


Ed1937
Posted: Thursday, April 11, 2019 5:47 AM
Joined: 4/2/2018
Posts: 5736


Thank you for making it available for everyone. Many people can use it.
MinutebyMinute
Posted: Friday, July 19, 2019 10:16 AM
Joined: 6/11/2019
Posts: 516


I find this to be very helpful information, even if I can't always be successful at all of it. Doesn't make me feel like a failure (any more than I already do each day at some point) but instead encourages me to keep trying.

I don't always agree with some of it either but we all have to try to find what works for us since the disease affects people differently and no one knows our LOs better than we do. (Although what I'm learning is that my mother just isn't my mother in so many ways anymore. )


 
× Close Menu