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Communicating with a dementia patient
Hi there, I need some practical advise to assist my mom who is the primary caregiver to my dad with dementia. My dad is almost 91 and has dementia that is largely presenting as depression and paranoia. His memory is relatively good. The worst problem is that my dad accuses my mom of stealing his money and of trying to poison him. He has started making all kinds of hurtful accusations and my mother isn't handling it well at all. I've told her she has to remember he has a condition and that she has to stop taking things so personally. She said it's easier said than done. I told her she almost needs a script of responses when he starts ranting and raving about taking the money, saying she's a bad person. Does anyone have any books or suggestions for my mother as well as my sister and I when we have to encounter my dad saying all these things. We have other problems to deal with, but this is the most immediate to keep my mom from losing her mind or having a heart attack or stroke. Thanks!
@tp11043557 I’m so sorry to hear of your dad’s challenges. Do you have a diagnosis of a specific type of dementia? The reason I ask is because some types of dementia present with more symptoms like this - personality changes, anger, using language they wouldn’t normally use in the past etc.
In terms of behavior management, try to think of the behavior as anxiety. Everything in his world is changing and he can’t quite figure it out and he feels very insecure. For some types of dementia, paranoid thinking comes along with it also. Think about what he must be feeling and validate HIS feelings and thoughts rather than trying to correct him or “bring him back around to reality”. Naomi Feil wrote a book about Validation Therapy many years ago and I received training from her back in the 80’s when I worked in adult daycare and nursing homes. Basically, you try to join the person in his/her reality and validate their feelings or thoughts. Then try to divert there attention elsewhere.
So, for example, if he accuses someone of stealing, you might say, “I know your money is very precious. We wouldn’t want anyone to steal it for sure. I can imagine you’d feel very upset if someone stole your money. You worked hard for your money didn’t you?” Try to engage him in a conversation about money, work etc. or you might say, “Here’s your money” and keep a coin purse with coins in it that he can count (or dollar bills or you might even try fake money from a game). It’s important to try to keep him busy - folding towels, sorting things, etc - to occupy his mind and body.
Teepa Snow has a great website and lots of practical advise and videos about how to handle dementia behaviors in a positive way - check her site out!
Hope this is helpful. My Dad just died two months ago and he had Alzheimer’s for 12+ years. When he got anxious I did a lot of things to calm him - distracted him with music (he loved to sing), gave him a hand, neck, shoulder massage, diffused lavender essential oil etc. You might try some of those things - when is he the most relaxed?
Let us know how else we can help!
Amy Goyer, AARP’s Family & Caregiving Expert
Author, Juggling Life, Work and Caregiving
I learn from experience.I was 16year old first been caregivers to both of our parents. The first one I took was our mother she had asthma and diabetic. Our mother said me to take of her husband and I said ok .and our mother said to me .youare my little nurse.atfer that our mother pass away when I was 21 and I kept promise to take care of our father. Our mother pass away at age 59.I was 21 take care our father as he got older in 70 later years he have stoke .one day he call me Olivia that our mother name. I ask our father why you call me Olivia do you know who I'm .our father said I know who you is ,and I as our father what my name me Ree.and he said your mother name you Ree that my nickname and he was right .and ask him why you call me our mother name he told me you remind of your mother .you look like your mother.that's what last time he die that years pass way .when I was 39 year old .our father pass away at age 79. I'm so very very very happy it I was their caregiver for our parents
I learned at a seminar to wait for a response before asking another question or making another statment. In the late stages of dementia, the person said to carry a 90 second (seems forever) timer and literallly wait that long for a response.
Excellent advice. Wait, and repeat. One instruction at a time. "Put on your coat." "Go ahead and put on your coat." "Time to put on your coat." Instead of "Put on your coat and get into the car now, okay?"
Alzheimers kind of runs in my family. Have no contact with my mom's side which is fine but my dad's side has kind of stepped in. They will get my estate. When long term care comes around, I think it's a roll of the dice. I've made no provisions for that so I'll just have to take my chances on that end.
Hey there. I find the whole idea of advance care planning and financial management seriously intimidating, but that said.... since it sounds like you have an 'estate', you might want to be a wee bit more proactive than taking your chances and rolling dice? Just saying. An elderlaw attorney would be ideal, or a geriatric care manager in your area. you can find caremanagers on www.caremanager.org and elderlaw attorneys by googling in your town or area.
Just wanting to help you protect yourself...
1. Primary doctor
A psychiatrist can prescribe a good mood medication that can help with negative thoughts. Also, if the father is a veteran, there is a homemaker program through the VA that gives the primary caregiver through the primary doctor in home care service that can give your mom some free time to herself to recoup. Best Wishes!
I think you got a lot of good advice here. Wish I'd known about that book when my mom was going through her dementia. I guess the only thing I would add is that your mom needs to take care of her
self, both physically and emotionally. Any stress relief methods would be helpful to her - such as yoga, naps, getting out once in a while, good diet etc. I found with my mother that keeping a calm voice was helpful; otherwise, the issue would just escalate. Also, agreeing with everything she said. Just staying calm and saying things like "Yes," "I'm so sorry," "How sad," would calm her. Also, after a few years, she didn't know who I was - for a while she thought her grandaughter was me. It didn't help matters to constantly tell her who I was or tell her Lisa wasn't me. I just responded as if I was who she thought I was. It's a tough road, for sure. I'm sure your mom will appreciate any help you can give her.
Yes, it doesn't matter if a person calls you by the wrong name; just answer. My brother asked me once how I could stand it when my Dad repeated the questions. I said just answer - you get used to it. It's the easiest thing to do when caring for a dementia person.
You all have my sympathy. The years caring for my little mother were the best seven years of my life. Admittedly the first year or so was difficult, as I tried to learn how best to be with her, for I wanted to make her understand things, to help slow that slide into what I feared was oblivion. At a support group meeting, I learned something that helped more than any other advice: Don't disagree or argue or try to explain facts.
For several weeks, Mother worried in the afternoons, "Where are the children? I never let the children stay out after dark." My early attempts to convince her neither of us had any young children didn't work. So, though it hurt my heart to do it at first--to lie to my mother-- I would say, "Those little dickens came home when you weren't looking and they're in bed asleep." She would start playing with me then, saying, "Well, land of Goshen, how did they slip past me!" I'd say, "They're sneaky little kids, I guess." She might answer, "Those must be your children. My children would never act llke that." And we'd laugh.
Maybe when your father gets all upset thinking your mom is stealing his money, she could tell him how she's invested it, or put it away for safekeeping, or robbers took or anything that doesn't argue with him about it.
Mother went searching for the deed to her house. When I asked if I could her find something, she said she was worried that someone might be trying to take over her house. Tony and I were the likely candidates, since we lived with her. I sat down with her and I showed her that she was the only owner on the deed and there was nothing anyone could do to change that without her say so, she began to relax. Then I asked her where she'd like to keep the deed, somewhere she'd feel it was safe. She found a place to put it--in the Bible--and that was that last she worried about it.
I'd like to write more, but this is getting lengthy. Good luck. Laughter. Putting yourself on his side, saying something like "we'll figure this out." Make him laugh.
That was very helpful. My sisters and I are experiencing the same symptoms that many of you have mentioned with my mother and it’s been difficult adjusting. It’s only been a couple of years but I noticed the decline increases whenever there’s a change in routine. My sisters and I take turns caring for her in her home but I’m beginning to think that it would be best for one of us to either move in with her permanently or move her in with us. Stability seems to be what she needs more than anything since shes afraid and suspicious of everyone. Only problem is one sister lives with her but doesn’t feel that she should carry the hold load so she leaves. I live in another state and come back and forth because I take care of my disabled child as well. I wouldn’t mind taking my mother but that would mean another drastic change for her. Then the other sister still works full time which makes it impossible for her to do it. A care facility has been out the question until recently but emotionally very difficult to initiate. I’m at a lose. Just venting.
Vent away, SH
Whatever Amy G says is golden, so consider her advice.
I'm thinking about the family dynamics here. Various siblings have varioius burdens. More or less income. Physical distance from her. Job responsibilities. So, what if you all had a family meeting. Some weekend when you all can visit her, and have a discussion. If one of you has a lot more money than the others, how about if she contributes income to pay for an aide? How about taking turns? Some full time jobs have generous leave packages. All possibilities should be on the table. No excuses, just join in as a group of people who care about her.
Another thought: has she been given an anti psychotic like haloperidol? it's been around forever and it sometimes reduces that paranoia and suspiciousness that dimentia brings. At the least, her primary care provider should be assessing her mood and her paranoia. Better living through chemistry, I always say. We don't want to overmedicate her ever, but, it is worth the trial and error to find a medication that will make her less paranoid, and perhaps, less agitated anxious and depressed.
As for stability, yup that would be ideal. It might not be achievable, perfectly. But if all of you work as a team, and tell her, hi mom, this is the calendar, it says right here that it's my turn to spend the weekend, with you. So! What shall we do today? You can distract her from the changes with a cheery mood yourself, and orienting her gently.
If all of you decide she can't stay at home or anyone's home, check out "A Place for Mom" and see what they suggest. They are free on the phone advisers and they are really good at what they do. She might be eligible for some help, too. Does she have a fair amount of savings? And eldercare attorney will help you all plan for her care and cost out your/her options.
What do you think?
My father had dementia and I volunteer with people with dementia. I treat them as though they are fulllly aware of everything and know exactly what is going on. I believe they know who is there with them, who visits, etc. I just believe they are now at a different level of communication that we simply do not yet understand. They really are aware and know what is going on. We just don't understand it all yet.
Hi there, tp.
Oh paranoia. that is the hardest, i think, of all the symptoms of dementia, the absolute hardest. It is delusional thinking and its very hard to fight delusion with rationality.
I hope this doesn't sound flip or glib; i mean it with all seriousness. Please have your mother take him to see a psychiatrist. The USA needs more geriatric psychiatrists than we will ever have, and there might not be one in your area (or your parents' area) but even Joe Schmo MD shrink can be helpful. Here's why. There are anti psychotic medications that can help him. Like haloperidol, which worked one one of my clients who was so paranoid that she had the police come to her home dozen of times for thefts which never occurred. She'd misplace things; she'd assume she'd been robbed, and she'd call the police. Finally the police reported her to adult protective services and she was assigned a guardian who hired me. Hoo boy it took a while to establish rapport. I would talk to her through her door. (I'm a geriatric care manager. www.caremanager.org.) To make a long story short, we went to see a psychiatrist who told her he would give her something 'to reduce stress'. (This is a lot like ASTRAEA's story). And a few weeks later, she admitted that the voices in her head (she'd finally admitted to hearing them) were 'less intense.' I almost danced a happy dance.
Your mother does not need to take what is essentially verbal abuse. Yes he is sick, he wouldn't be saying this if he didn't have dementia. But she's working hard to care for him and this kind of attack is terrible for her to endure. I say, assess for medication. By anyone if you can't find a psychiatrist: his neurologist or his GP might help. Sooner rather than later.
Also relieve her isolation and burden, whether or not his paranoia lightens up. Type her zip code into www.eldercare.gov and call the intake social worker. Make her your new BFF. Find out what's available. Help your mother out.
And please keep sharing your story, and hers and his. We learn from each other.
I agree with the book the 36 hour day, one of the best I've read and easy to understand.
When someone with dementia gets an idea in their head, it often is nearly impossible to reason or get them to change their minds. Accusing someone of taking something is very common. They *know* they didn't misplace it so it *has* to be someone else. I like how it was explained here:
Breakdown: "That new caregiver you hired, she stole my purse"
Response: "I hear that your purse is missing, I'm so sorry that that happened. Could I look around one more time? I'd hate to find out it just got put somewhere to keep it safe..."
Explanation: If your loved one has dementia they might be prone to falsely accusing people (including their caregiver) of things like stealing, and abuse. This behavior is not only hurtful, but potentially incriminating.
In these situations, it's important to remember that your loved one is only saying these things because their brain is telling them that they are true. Your loved one's mind is trying to fill in the information gaps caused by their dementia. This can result in something called, confabulation, also known as "honest lying."
Confabulation can be so powerful that, according to Snow, people with dementia have passed lie detector tests while lying because they truly believe their story to be true.
Your mother may say that the home care worker you hired stole her purse because: 1.) Your mother currently can't find her purse, because she hid it in a "safe place," and now she cannot remember where she put it, and 2.) Your mother saw the care worker pick up her own purse and leave the house with it. In this instance, your mother's mind is making up a story using separate, but related pieces of information to help make sense of the fact that she can't find her purse.
In this scenario, you won't be able to convince your mother that she is wrong, so Snow says to avoid confronting her about it.
Instead, it's important to validate your mother's feelings and display empathy by saying that you're sorry her purse is missing. Asking your mother's permission to look for the purse will hopefully allow you to find it. Once you recover the purse you should just apologize again. You should also avoid saying the equivalent of, "I told you so," as it may make your mother defensive and less likely to trust you in the future.
Snow points out the unfortunate reality that elders will be more prone to accusing the people that are most involved in their care (caregivers, other family members) because those are the people that they see most often. This can be extremely hurtful, but she says that it's important to try and let it go and view these accusations as brain failures, rather than personal attacks.
This is just the type of situation I experienced today. My mother lashed out at some of her neighbors in her senior apartment complex. She said that she told them that she didn't care if they reported her to the office manager because she was eating in the lobby. I said, "Can you just go into the Community Room where they have tables?" She hangs up when I don't tell her what she wants to hear. I wonder if her behavior will cause her to have to move. There is a section in their lease that mentions something about being loud in the lobby.
Family members may become worried or disturbed when their loved one with dementia exhibits behaviors that are "embarrasing" or unlike their previous self.
If you senior loved one lives in a senior community that cares for individuals with dementia, most behaviors will not appear unusual or embarassing. It is very important to choose the correct community when looking for a home for a senior with dementia. If your loved one lives in such a community, you may still feel embarrassed. Try not to compare your loved one to their former self. An individual with dementia may exhibit behaviors that involve cursing, yelling, i removing their clothes, eating with their hands, repeating sentences, or acting childlike. In most cases, the staff will not be thinking about asking your loved one to move. Ask the staff for assistance and advice. Look around the senior community and you may see other individuals with dementia exhibiting similar behaviors. Continued success on your caregavirng journey
@sh7199670 Some forms of dementia progress very gradually, so you'll need to find services and support for your parent that will change over time as his/her needs change. My Dad had Alzheimer's for 12+ years and he was still quite independent in the early years, but started needing help managing finances. Eventually we asked him to stop driving. Later he had trouble figuring out how to make the coffee, then trouble with taking his medications. Eventually we had to pick out his clothes for him but he could dress himself. Eventually he needed help doing everything. So the help/support your loved ones needs kind of depends on where they are in the progression of dementia.
Safety is always a top priority, so you'll want to be aware of an risks for getting lost, leaving the stove on, taking the wrong medications etc.
A good place to start is AARP's new Community Resource Finder. AARP has partnered with the Alzheimer's Association to offer this free resource finder so you can connect with services, events, housing and more - all in your local community.
If you go to the Community Resource Finder and click on "Community Services", and then click on "area agency on aging" you can learn how to contact your local agency and they are also always a good place to start finding out what's available in your area.
Hope this helps! Please let us know if you have any further questions!
Amy Goyer, AARP's Caregiving Expert
Sounds like you're on the right track, with guidance for your Mother .. it isn't easy! A book I found to be helpful years back, was "The 36 Hour Day: a Family Guide .." . It's available at most large bookstores, and online. Apparently it's also available on Youtube: https://www.youtube.com/watch?v=HlF_mOrcd1Y
Has your father seen the doctor & been diagnosed? If your Mom and/or you & your sister are close to his doctor, you could speak to the doctor ahead of time, so he's able to ask the right questions .. without your Dad realizing he's "being evaluated", or the words "Dementia" or "Alzheimer's" actually being said. You may all have noticed that Dad is better certain times of the day, and worse at other times .. so you can save important discussions with him for when he's in better shape to communicate & more cooperative.
My Aunt who lived with me was 92, when she began occasionally seeing & saying things that didn't make sense. She thought she heard noise in the basement, but didn't want to go downstairs, and "upset the people living there" .. I had a single family house & there was no one in the basement. She had large mirrored closet doors, and if I were in her bedroom behind her & being reflected, she'd say she saw someone "beyond the closet in another room".
The worst part was her starting to get up in the middle of the night, insisting that it was morning, and starting to get washed in the bathroom. Even when I'd open the curtains to show her it was pitch black outside, she'd say it was a plot to keep her from getting up! She was normally a very gentile & soft-spoken woman, but would get very irate when I'd insist she had to go back to bed (at 2 am). Yet the next morning, when she was "back to normal", she'd remember what had happened & be upset that she'd been uncooperative!
She would have blown a gasket, at the suggestion of dementia, but I talked to the doctor about her symptoms; especially the getting up in the middle of the night. So when she saw the doctor, she freely admitted that she was having trouble sleeping, and was happy to start taking Aricept (for Alzheimer's) because the doctor told her it would help her sleep .. and it did!
Registered on Online Community since 2007!
I did an internship at a nursing home several years back and actually did quite well with several dementia patients. Of course when it's your loved one and you live with them...quite a different situation. Your poor Mom must feel like she's landed on another planet sometimes.
One thing I would suggest is looking into any kind of respite care available. If she could just look forward to a couple hours a week where your Dad is safely under someone elses care and she can have time to regroup. Also perhaps seeing if there might be support groups in her area. Sharing online is helpful certainly but having a group of other caregivers to talk to in person hugs and human touch and other people who know what she's going through would be a big help. Dementia is so very hard to deal with.
I'm a writer and avid reader so I have an easy time stretching my imagination. When I dealt with patients I let them be in whatever reality they were in. Several had conspiracy issues and safety concerns. It was about reassuring them repeatedly that whatever they were feeling could be resolved. Even if it was a long story of Mr. Rabbit Ears wiping out their whole family and now he was coming after them. Well you know the police are out there and there are really strong locks on the doors, if you hold my hand we're safe. Wherever they are let them be there. It's tempting to say "Oh don't be ridiculous Dad", but that doesn't work. Wishing you the best.
I thought I was replying to specific posts, but I think this goes to everyone. Thank you all for all of your suggestions thus far... I look forward to reading the book. My dad has been diagnosed and regularly sees a geriatric pyschiatrist through the UPMC (they live in Pittsburgh area). That's the one thing my sister and I seemed to do correctly. UPMC has a Senior Care Practice, which has primary care doctors, pyschiatrists, social workers etc. I think my dad is getting good care and I think they are staying on top of his medications, but he still has the paranoia. He has an appointment in two weeks, so I was certainly pass this information along to my mother. She is having a hard time with everything and is somewhat (not being disrespectful) stubborn about speaking with a professional psychiatrist about all of this. We keep encouraging to have someone other than family and friends to talk to. She is also stubborn about support groups. I have told her about this online community because for me the knowledge is so powerful. I truly believe we can all learn from each other. Just one other thing to share, my folks live in PA and my sister and I live in VA. It's truly a double-edged sword, but we are trying to get my folks to relocate here and stay with us. Pros and cons of each side, but my sister and I have to work and getting back to PA is difficult. Thanks again for your support and suggestions. I truly, truly appreciate it
... Thank you all for all of your suggestions thus far... I look forward to reading the book. My dad has been diagnosed and regularly sees a geriatric pyschiatrist through the UPMC (they live in Pittsburgh area). That's the one thing my sister and I seemed to do correctly. UPMC has a Senior Care Practice, which has primary care doctors, pyschiatrists, social workers etc. I think my dad is getting good care and I think they are staying on top of his medications, but he still has the paranoia. He has an appointment in two weeks, so I was certainly pass this information along to my mother. She is having a hard time with everything and is somewhat (not being disrespectful) stubborn about speaking with a professional psychiatrist about all of this. We keep encouraging to have someone other than family and friends to talk to. She is also stubborn about support groups. I have told her about this online community because for me the knowledge is so powerful. I truly believe we can all learn from each other. Just one other thing to share, my folks live in PA and my sister and I live in VA. It's truly a double-edged sword, but we are trying to get my folks to relocate here and stay with us. Pros and cons of each side, but my sister and I have to work and getting back to PA is difficult. Thanks again for your support and suggestions. I truly, truly appreciate it.
Thank you for letting us know more, tp. It helps us to learn. Pittsburgh is such a great place, a beautiful city. Glad he's getting such good multidisciplinary care. I wonder what medications he's on. In any case. your mother needs some support and coaching from the sound of it. She's in a tough place but she's also not reaching out for help. One does not DO that, one does not complain, or air dirty laundry. With coaching and support she might listen over time. "Mom, it sounds terrible, and it must hurt and also make you mad. Have you mentioned to the doctor/psychiatrist/social worker how mean he can be to you? It is not an inevitable part of his disease. And you don't have to just take it from him."
There are behavioral ways to reduce this behavior. I wish i knew more about it but basically what i understand is, reward the good behavior. if he says thank you, or notices something positive, give him a treat. Seriously. He loves M&Ms? He gets a handful every time he's nice. Reward the good behavior and he might produce some more of it. Worth a try. Sounds like he's a puppy in need of training, in a way. She can train him to be nicer.
Relocating is a trick. I'm helping a niece relocate her uncle from Florida up to Maryland. Doctors have to be located. Possessions downsized. A suitable place located. Not quick. However, it can be done and it certainly reduces your stress and your sister's. I can make some suggestions on steps to take, if you want to hear them.
Your mother deserves better. I hope she can begin to ask for it.
I thought I was replying to specific posts, but I think this goes to everyone. ..
I was certainly pass this information along to my mother. She is having a hard time with everything and is somewhat (not being disrespectful) stubborn about speaking with a professional psychiatrist about all of this. .. She is also stubborn about support groups. I have told her about this online community because for me the knowledge is so powerful. I truly believe we can all learn from each other. Just one other thing to share, my folks live in PA and my sister and I live in VA. It's truly a double-edged sword, but we are trying to get my folks to relocate here and stay with us. Pros and cons of each side, but my sister and I have to work and getting back to PA is difficult. Thanks again for your support and suggestions. I truly, truly appreciate it
Although you click "reply" on a specific post, what shows up doesn't display any connection to it, unless you use the "Quote" (red button on upper right by entry pane) feature. If you click "Quote", it will enter the entire post to which you're responding .. and then you can edit out whatever you don't need .. so you/everyone sees the connection. Then type your response BELOW that.
In a way, parents can be very controlling, in their own "helpless" way, by expecting their adult children to do/be everything for them, instead of shifting some of that need for support to professionals & support groups. Been there, done that!
Having nothing to do with dementia, my Mom would get very severe nose bleeds, and would call me at work, expecting me to rush out or go straight there from work, to take her to the hospital. It took me 75 minutes to get there from work, so after it happened twice within a couple of weeks, I told her to either call a friend or the volunteer ambulance squad .. which could get her there in 15 minutes!
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