How Can You Help People Who Have Dementia and Don’t Realize it?
Funny senior lady looking at camera having a good time dressing up

Being a caregiver for someone who has a memory deficit can be extremely challenging. It becomes even more difficult when that person is unaware of their dementia or any other limitations associated with it. Dementia can directly impact a person’s ability to follow directions, can compromise their safety,  impedes problem solving and abstract reasoning. It can cause them to be impulsive or unrealistic about their abilities. There are things you can do and approaches you should avoid as a caregiver facing these parameters.  

From an emotional standpoint it can be extremely frustrating for a person with dementia to be told they should not be doing tasks they believe they are very competent to manage. Any caregiver trying to create a safer environment may be on the receiving end of angry outbursts and defensiveness from the person with dementia whom they are trying to keep safe and protect. Here are some suggestions about how caregivers can approach working with a person with dementia who is unaware of it:

Communicate in a calm manner.

Be as empathetic and supportive as you possibly can. Be aware of the tone of your voice and the message you are sending and how it is or is not being received. Also be aware of your body language and facial expressions and what they convey.

If you find yourself starting to get angry or stressed remove yourself or take a time out for your own sake rather than arguing.

Take a break from the conversation or task at hand. If it safe to remove yourself from the person you are watching give yourself a few minutes to take a deep breath, regroup your thoughts, and calm down.

Try to separate the person from the disease.

This is tricky but important. Remind yourself the person with dementia is not intentionally trying to be contrary. The disease is causing their memory loss or inability to do the things they used to. Sometimes recognizing why someone is behaving in a negative way helps you get to be in their shoes and makes you feel less attacked and more understanding.

Don’t engage in arguments about who is right or wrong.

That won’t help anyone. All that does is reinforce the deficits the people with dementia has causing them to dig in and not do what you need them to do. Does it really matter if they think it is Thursday and you know it is Friday? The best thing to do is to distract or disengage from that conversation and focus on something that is neutral or something you know they will enjoy. People with memory problems may confabulate, or make up answers to explain things that happen. Just let them say their version of events and then move on to something else.

Try to pick tasks you can do together and work as a team.

Everyone wants and needs to feel wanted and useful. Maybe they can help put laundry in the washing machine or put dirty dishes in the dishwasher. Even if they make a mistake you can always pull the dirty dish out later if the dishes were clean.

Try to create as positive a relationship as you can.

Be friendly and warm with the person you are caring for.  They will be more apt to work with you than against you if they sense you are on their side or feel friendly towards them. You can do this by trying to give them as much control as possible about things that need to be done, and when and how they should be done. This makes them feel better when they believe they are making these decisions.

Give them two choices that are both acceptable options.

For example, lay out a blue and red shirt ask them to pick the one they want to wear that day. Do you want chicken or tuna for lunch today?

Break down the task that need to be done in as few and simple steps as you possibly can.

Make it as easy as possible for them to do chores or tasks. Have the watering can out and put water in it and the flower on the counter.

Don’t infantilize the person.

Don’t talk around them or about them when they are in front of you as if they were not there. Talk directly at them using their name. It is important to continue to reinforce people and their names to enhance memory.

Don’t remind them what they can’t do and reinforce what they can do.

Nobody wants to hear all of the things they can’t do. It is human nature to crave approval from others. Maybe grandma can’t play guitar anymore but she still has a beautiful voice. Pick a song you know she can sing and ask her to sing it for you.

Validate their fears or concerns.

Try to express your understanding about any fears, frustrations or anxiety they discuss. Be as empathetic as possible and validate their feelings as best you can. If they express fear for example, tell them “I know you were scared by that loud noise, I would be too. I am going to see what I can do to make it stop or make the noise less loud.”

 

 

Written by Iris Waichler
Iris Waichler, MSW, LCSW is the author of Role Reversal How to Take Care of Yourself and Your Aging Parents. Role Reversal is the winner of 5 major book awards. Ms. Waichler has been a medical social worker and patient advocate for 40 years. She has done freelance writing, counseling, and workshops on patient advocacy and healthcare related issues for 17 years. Find out more at her website http://iriswaichler.wpengine.com

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35 Comments

  1. This article never said or implied that it was simple. And feeling “horrible” or “like a failure” when caregiving for someone with dementia is all part of it. Feeling sorry for yourself as a caregiver is part of the process too. But along the way, you learn about yourself. What you’re willing to do, and reconciling that with what you can do. Realizing that caregiving isn’t a decision made for you or to you but a choice you made for yourself. If you can’t do it, don’t judge yourself. If you can’t do it for an unknown number of years, don’t judge yourself. We all have limits. Know yours. Don’t use caregiving as an excuse to check out of your own life. Caregive yourself first. There’s no shame in putting your loved one in a facility. Just know you’ll still have to be involved to make sure they get good care.

    Reply
    • Wasn’t a choice for me..my only sibling refuses to help so I couldn’t say no…..hate it….I want to go back to being a daughter again. ….

      Reply
    • I have two sisters that refuse to be involved at all. And one lives two houses down the road from me. You can’t go back to being a daughter. Grieve that loss. Cry for that loss. Mourn and wail. And then wake up each morning, put one foot in front of the other and do what needs to be done. I know all too well what a huge loss it is.

      Reply
      • Grieve the loss. Yes. That is so important. I think that was how I got on top of handling when my father-in-law got senile dementia, with my mom’s brain tumor, and now with my adult son’s mental illness. I had to grieve for the loss of who they were. Then I had to find things to like and love in the new person. Grief is hard – it is ok to feel that.

  2. My mom has dementia and is at the level of she can’t do anything anymore she forgets how to dress herself Now and has many health issues Emphysema, CHF, Chrons disease and now her oxygen is at 79 and she refuses oxygen its been six yrs of care giving and pulling my hair out, at night she looks for her room forgets where she is at! I am burned out and can’t go back to work it’s so frustrating!!

    Reply
  3. I needed this. I am dead certain my mother is suffering from dementia; although she is a clever gal and can come across just fine at a 90 minute church service or a 15 minute doctors appointment. She wears dirty clothes and wears them backward or inside out. She is horribly forgetful. She says things that are totally inappropriate to the conversation. She repeats what I just said like it is a new thought. The list is endless. I have dealt with this a s a RN and given a mountain of advice and teaching…but this is mom. So hard….
    My dad passed almost 2 years ago after a lengthy illness at home and I basically lost mom that day too.

    Reply
    • I’m a nurse in a nursing home and somehow when my mom started showing symptoms I said well she’s getting older and forgetting more. It wasn’t until an acute illness she lost the last fragment of her memory and could no longer hide it from us. Now that she’s passed on the signs were clear. Whining we don’t take her anywhere but refusing to go.

      Reply
    • Yes, mom has always been meticulous about her appearance, and now, dirty clothing. I have to sneak it into the washer. She gets mad and says it’s not clean, then runs the washer all over again, a few things on a full load of water. So frustrating. Her hair has been a mess. As hard as I try to wash, blow dry and curl it, she just combs it back. I finally took her to a salon today and they cut most of it off. It looks beautiful now. I can’t bleach it for her anymore because she forgot what bleach was and how to wash her hair. She had to pay out of her meager Social Security money. She can easily pull it off that she is ok at church or doctor, too. She’s good at faking everyone out. Interesting. And the house used to be immaculate. I clean it, but not as beautifully as she used to. She was spotless.

      Reply
    • Yep…people spend 15 minutes with her and tell me she is fine. I want to say take her home with you for a week.

      Reply
    • This is exactly how my dad is and it seemed to accelerate when he had his stroke.

      Reply
    • And when my mom passed, his dementia hit ten fold, then the stroke.

      Reply
  4. It takes tremendous patience…there are people who enjoy caring for the elderly..I am one of them called to do so..but I suck at other things My suggestion is to find humor in everyday life…

    Reply
  5. No not denied, I just let her be and she was fine. I loved her just the way she was until her last breath. My Mom

    Reply
  6. I suck at it too, and repeatedly say this to my family member, who then assures me that I’m great. Fortunately mine is only a bit flakey and not full blown dementia. My solution is to read up on brain reversals – Norman Droidge books that describe the plasticity of the brain and the value of various activities and procedures. It helps me cope and will hopefully restore some sanity to our situation.

    Reply
  7. I need to vent. I suck at caregiving, and maybe it’s time mom goes to a home. Some people are good at this, and others just scrape by. I feel like a horrible person and try to do the suggestions you give. Just getting by to me isn’t enough. It’s bringing ME down. I’m not a Dementia patient nurse. Feeling bad today after reading this.

    Reply
    • I totally hear you, I’m there as well. On top of that, I’m in adrenal exhaustion, with totally crashed adrenals, which makes everything 100 x’s worse. What she’s talking about in this article is lovely and in a perfect world where there were no issues with a parent or spouse that you’re caring for, would be absolutely fabulous, however most of us are absolutely drained and don’t have the capacity any more to do it this way. So most would say, ‘put them in a home’ but unfortunately for most, that would be a worse option due to the level of patient neglect. So do the best you can and don’t beat yourself up about the rest. Do whatever you can to take care of yourself if at all possible.

      Reply
    • Guenthard Erin. I did all the article is describing with my Mommy for 20 years, the last 8 with dementia. This article made me laugh, it makes things seem so easy. Not true, I want to think that everything was perfect, but that’s the point dementia sucks. I thought many times I would have to put my Mommy in a memory care home. Home care might be the answer for you, just please be proactive in checking on your loved one..

      Reply
    • Don’t be so hard on yourself !!! You are doing it and that’s what’s important !!! If and when you need to place your mom in a home PLEASE don’t feel guilty …. remember you’re doing what’s best for your mom !!! I took care of my aunt for 15 yrs and it’s not always easy !! Good luck ..

      Reply
    • Don’t feel bad i go threw same thoughts! This article is Not what goes on with full blown Dementia it’s Not That Simple!!

      Reply
    • When they reach a point where they need care 24/7, where they’re incontinent and spend their days shuffling from a chair in front of the tv to the bathroom for someone to change their diaper, even before that – I say, your job is done and it’s indeed time to ‘put them in a home’ where they can get care they need. And give you your life back. My mother went into a nursing home long after she should have, she didn’t know where she was, but she was always happy to see me and she was always engaged in something there, chatting away to her ‘new friends’. She was happy enough there for 3 years before she died. (I realize I was probably lucky in that she never made a ruckus about it, but she was more than ready for the nursing home.) ….Think of it this way – if YOU die, and there are no other caregivers on the horizon willing to step up and take over (HA HA) – she would have to go ‘into a home’ anyway. None of us are dementia nurses and we can’t do it all, forever, we know when we’ve reached the breakoing point. Start looking into placement and when you do, you will feel as if an elephant has gotten off of your chest. And your mother will be as well off there as anywhere.

      Reply
    • Thank you all for sharing your stories. It really helps. I appreciate all of you.
      Exactly, I am worn out, ended up in ER a couple months ago…had a meltdown, exhausted for her. And she doesn’t even know why I was at the hospital that night. They put her in the ambulance with me because no one to stay at home with her. She didn’t understand why we were there. When they released me at 2 am, she asked me “How is your leg”. I said “My leg? I am having a nervous breakdown.”. What a mess. Yes, I agree you have to research the homes because I’ve been to many to visit her friends with her. There are folks there just curled up in a ball on their bed. They look so terrible lonely and sad and depressed. But I think there are many good homes that aren’t like that. She probably should have gone about 2 years ago into a memory care home.
      I am using the Al-Anon program tools to get through this until further decisions are made. “One day at a time”. and “this too shall pass” and things like that. Just need some respite care and some days off.

      Reply
    • You’re not alone. We all struggle, it is not easy that’s for sure. Don’t feel bad for admitting you need help. This is your life too x

      Reply
    • My loved one has huntingtons disease, it’s got symptoms like dementia but accompanied with severe movement disorder and will become totally bed bound, the toll it’s taking is huge, it’s genetic, so my husband is at risk, I have to battle with the thought of finishing up caring for my father in law only to take on a role to care for my husband, and perhaps my daughter…. Do I get a life at all between them? You have to weigh up what’s best for everyone. We get one shot at this. Do whatever you need to do.bx

      Reply
    • I’m so sorry. I hope you are able to keep your back in shape. I know how hard it is to keep my back in good shape. have to work out and have good posture and do my physical therapy exercises. It’s hard when I’m tired and not motivated.

      Reply
    • The problem I’m having is The cost of Memory care homes can’t afford it for my mom.

      Reply

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