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Understanding Dementia Behaviors ~ Dementia and the Big Apple?

Last updated on May 22, 2021

In the early 1980’s, as a very young and inexperienced nurse’s aide, I had to learn how to react and respond to common dementia behaviors.  

Unfortunately, caregivers didn’t have the luxury of time or resources for help like they do today. There was no internet. There was no CNA program and certification yet. You didn’t even need experience with older adults to land a job.

Learning how to recognize and appropriately handle dangerous or aggressive behaviors such as yelling, hitting, kicking, throwing objects, and wandering out in the street was a skill that came with on the job experience. 

We weren’t always right, but did our best.

Common Behaviors in People Living with Dementia

An older adult living with dementia may experience any or all of the challenging behaviors associated with their disease: Anger, aggression, disinterest, paranoia, mood swings, wandering, pacing, restlessness, verbal abuse, and communication problems. Understanding that these are common behaviors of dementia can better prepare and help caregivers cope. Better yet, understanding why someone living with dementia has such behaviors is the first step to overcoming issues. 

Behaviors usually seem to come out of nowhere. You might be folding laundry or watching TV when suddenly you have a finger in your face while being called names and accused of stealing a purse. 

 

 

 

 

 

 

 

 

 

 

Common  Behaviors

  • Anxiety
  • Depression
  • Rummaging, rearranging
  • Paranoia, suspicion
  • Wandering, pacing
  • Hoarding
  • Poor grooming, dressing, hygiene
  • Repetitive behaviors such as tapping, tearing and words
  • Outbursts-emotional, verbal, physical, aggression
  • Refusal to eat
  • Isolation
  • Eating non-food items
  • Inappropriate social behaviors such as undressing in public, inappropriate conversation with others
  • Sexually inappropriate behaviors

What is going on?

Any behavior has been triggered by something very real to the person; try not to take offense at the things he or she says or does. Your role is to identify the cause of a behavior and then deal appropriately, respectfully, and kindly. 

I trust my instincts and think about the possible reasons why the person feels agitated—he/she could be hungry, thirsty, tired, afraid, cold, in pain, bored. He/she may need to use the toilet or want his/her shoes off or wish to go for a walk.  Considering all possible options helps me take the next step in solving the problem.  

Detective Work

 

 

 

 

 

 

 

 

 

A great caregiver needs to be a detective and a quick problem-solver. You must read the verbal and physical signs being used, then meet the person in their reality to successfully redirect them and defuse a potentially worse situation.

I train my care staff to always stand ready to react to a situation with positive attitude and non defensive words and actions; to be alert and aware of the environment. Know where other people, furniture, pets, and doors are located to prevent the person from hurting themselves, you or others. If necessary–step back so you don’t get spit on or remove an object so it can’t be used to injure anyone. And to have each other’s back–don’t gang up on a resident, but to allow one person to do a one-on-one intervention. 

Take a deep breath, look the person directly in the eyes and speak calmly. Don’t  argue with them. Don’t talk in a condescending tone. Validate his/her feelings by allowing him/her to talk. Listen to what the person is saying and respond with understanding and respect. This might be all they needed–to be listened to. 

Being quiet and calm works best. You can redirect the person by using the solution you’ve come up with–while listening to them–turning on their favorite music, getting them a drink or snack, removing their shoes, going for a walk, or whatever it is they need you to take care of. 

 

 

 

 

 

 

Situation handled!

To Tell the Truth or Not?

From the time we learn to walk and talk, we are taught to tell the truth. But in order to redirect attention or stop a possible argument in a person living with dementia, it may be necessary, at times to use therapeutic fibbing. In other words you tell a white lie to avoid making the agitation, paranoia, fear, or depression much worse than it already is. 

For example, Ruth has been waiting all day for her daughter to call. She is concerned about the time of an appointment. She hasn’t participated in activities all morning and has just refused lunch until she hears from her daughter. You already know what time her appointment is because the daughter told you and Ruth their plans a few days ago. Ruth cannot remember the conversation. So, I tell Ruth her daughter called a only a few minutes ago, when she was using the toilet, to say she would pick Ruth up at 10:30 tomorrow. to bring her jacket, and they’ll go to lunch afterwards. I write this down and hand the message to Ruth. She can read it, keep it. And now comes to lunch.

I lied about the daughter calling, but the information about time and plans was true.

This is not a “go to” solution. Be honest as much as possible.

Elsie and the Big Apple

In 1981, on my first day on the job, my trainer and I were getting residents up for breakfast. I had to stand in the doorway for a couple of minutes for my eyes to adjust to the total darkness in a room at the end of the hall. A tiny woman was propped up in bed. She was squinting and pointing at me and yelling, “Get out! Get out! What the hell are you?! Lieutenant Colonel Ralph’s coming to get you!” She kept screaming “I hate you!” and “Help! Help! Ralph, Help!”

Wow, and a good morning to you my fine lady.  

Okay, she wanted me to leave. She put me down. And hated me. For a split second, I thought of a few choice comebacks. It’s human nature to feel defensive when someone is offensive, right? But I simply said, “Elsie, don’t you recognize me?” 

She leaned forward and squinted some more. I held my ground, waiting, not even sure where the question had come from or why I had asked it. I was out on a limb, but didn’t know what else to do. 

My trainer turned on the light and was in the closet getting Elsie’s clothes. I stood in the doorway waiting.

After a long string of rude names and threats, Elsie finally shook her head, “Is it really you?”

“Yes, it’s me!” I smiled and walked closer. 

At this point, I wasn’t sure what would come next. But suddenly she giggled and clapped her hands, pronouncing: “My long-lost cousin from the Big Apple!”

“Yep!” I answered without even thinking. Well, I was in it now. 

My trainer guffawed. And I almost did too. Instead I gave Elsie hugs and kisses.

From then on, we were fabulous friends–the hellian duo! I cared for Elsie until she died 2 years later. 

Why I lied…

Elsie’s behaviors were difficult to say the least. She fought whenever she needed a shower, shampoo, or to use the toilet. She threw objects, spit out her food, used foul language, scratched, bit, kicked, and accused people of torturing her. 

I know it’s because she hated depending on others to do her intimate cares. Elsie was very lonely and scared. She also had continual pain in the leg she’d broken as a teenager while skating on Lake Erie with Sonia Henie the Norwegian Olympic winner and film star. (Actually, she had a bike accident in Idaho, but I never corrected her about those little details :D). 

Elsie complained about the “pig slop” (food) and many other things when I helped her.  But I could get her to laugh and reminisce about “the swell times we had together in the Big Apple”. 

Elsie told anyone who would listen that I was her cousin. She was actually quite proud of me! 😀

Lieutenant Colonel Ralph was the son Elsie adored and threatened all staff with. None of us had ever seen or spoken to a Ralph, so assumed he was as fake as the Sonia Henie story. We’d simply nod or say okay when she yelled “he’ll throw you in the brig!” 

But the day a 6’4″ tall man came to visit Elsie more than a few jaws dropped to the floor. He was middle-aged, bald, and stern-looking. And was dressed in an immaculate Lieutenant Colonel uniform!

As Elsie beamed, I realized the jig was up. Either I was gonna get fired or sent to the brig or both for letting her think I was her cousin, but for Elsie’s sake–because I didn’t want her to feel tricked or lied to–I had to talk to “cousin Ralph” so he wouldn’t blow it.

I quietly explained that Elsie would let me help her with showers and toileting and eating because I was her long-lost cousin from the Big Apple. Lucky for me, the guy had a wonderful sense of humor and could see how excited his mom was to tell him I’d come home. He was awesome–welcomed me back from NYC with a big bear hug! 

Take Home

Was I dishonest with Elsie? Yes. But did I fib to hurt her? No. I calmed her and made her laugh, I went to her reality. We connected and bonded. She never knew my name, but recognized me as a safe person. And I truly loved her. She felt that. 

Elsie seemed happy when we were together despite her discomfort, depression, anger, confusion, and paranoia. I have to believe I did what was best at the time. I’ll never know for sure. But the words that came out of my mouth that morning worked for us. 

Thankfully, in recent years, the internet and specialized training have improved the information we receive about dementia. Caregivers don’t have to guess as much, although there is no playbook or cure-all. Each person has a unique personality, memories, interests, preferences, and perspectives. But resources, services and supports that are available to help each of us provide kind and respectful care have made our jobs much easier. And very rewarding. 

 

 

 

 

 

 

 

 

 

 

 

Please leave comments, questions, suggestions, requests, experiences below. I’d love to hear your stories…

Good luck in your journey!

All my Best,

Tamara

 

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9 Comments

  1. MrBiizyMrBiizy

    Oh myyy… I had an awesome experience reading through this piece on dementia behaviours with big smile on my face as read through and especially your encounter with Elsie. I’d say you are such a genius to have been able to play along and cope with her and even brought some kinda peace in her life plus her son has a good sense of humour.

    These dementia behaviours could cause damages and hurts (both physical hurt and even the client if not properly handled) so I find your tips and experience useful in coping with dementia behaviours. As always, you have done well ma’am.

  2. Shanta RahmanShanta Rahman

    Many thanks to you for giving us such a beautiful article and I have learned through you some wonderful information that will be of great use in my life. You have described very well in your article how to serve a mentally sick man and how to help him.And it could be an older man or maybe a middle-aged man. But if we want to serve them, I will face many challenges .We need to understand how to talk to them and they will be happy, You wrote very well how to feed them and how to tell them to go to sleep and how to talk to them. And I hope that after reading your article many people will learn a lot about this and how to deal with situations like this.

  3. AlblueAlblue

    Hi Tamara, thanks for sharing your story. This reminds me about my friend. As the youngest son, he was tasked to take care of his grandma, who had dementia. I remember about the lies he had to make in order to calm the grandma, such as when he pretend to be her husband. It’s a sad story, but his grandma has finally passed away in peace. I agree with you. Thanks to the technology, we can search for the information we needed easier. 

  4. LineCowleyLineCowley

    Oh I love your story of Elsie and the Big Apple, and how clever and quick you were to respond that way. My dad developed dementia when he was in his mid eighties. He was always a hoarding and loved walking, so that did not alarm us. But it was the aggression that he started showing. From a peaceful man, these aggressive outburst became more regular. We also learnt then, that it was best to agree with him, even if it was a lie. 

    Thank you for a very helpful post.

    • TamaraTamara

      Hi, 

      Thanks for visiting My Dementia Digest. Unfortunately, dementia changes personality. My dad was a strict, matter-of-fact kind of guy then with dementia, turned into a teddy bear. Agreeing with someone who is living with dementia is best–we may not see or hear the same things they do, but their reality is just as real to them as mine is to me. 

      Respect and love and kindness…

      Thanks again,

      Tamara

  5. VanabellVanabell

    Hi Tamara! Well you deserve all the accolades for this. Impressive! Well I have had quite the experience been around someone loved with Dementia. At its first stage, it doesn’t see too bad, just random memory lapses now and then, it then gets to a time where the person begins to forget things that happened not long ago,  important things, and then… when it gets so serious and the person losses it all, ability to walk, sit, swallow etc! It is so painful, heart breaking, Most especially when you have so much memories together.. Really sad..

    • TamaraTamara

      Hi, 

      You are correct: Dementia is a very sad disease that is terrifying to be a part of. 

      According to the Alzheimer’s Association, there are 50 million people worldwide living with Alzheimer’s and other dementias. And there is no cure at this time. 

      My purpose for working with people living with dementia is to enhance their quality of life. I do this by listening, holding hands, hugging, singing, dancing, telling stories, playing games, taking walks and drives, eating ice cream and chocolate, and laughing. If I can help one person feel special (happy, included, listened to, understood, important, loved) for one second, I’ve done my job well. 

      Thanks for stopping by Dementia Digest,

      Tamara

  6. Memor12Memor12

    This article got me laughing. Thank you for making my day and also teaching little things that we always overlook when dealing with elderly people. I see people getting very angry each time they get shouted at by elderly people for no reason. Now I understand and know what to do when things like this happen. 

    There are so many Elsies out there but unfortunately there are just a few people like you, who really understands how to handle them. Thank. You very much. 

    • TamaraTamara

      When I met Elsie, I had no clue what to say or do.

      Nowadays, there are some basic Do’s and Don’ts (alz.org) to remember when interacting with someone living with dementia (This list is framed and hanging on my office wall to remind me and everyone else).

      Do *accept the blame when something’s wrong (even if it’s fantasy), *respond to the feelings rather than the words, *leave the room, if necessary, to avoid confrontations, *be patient and cheerful and reassuring, *practice 100% forgiveness.

      Don’t *argue, *reason, *confront, *question recent memory, *remind them they forget, *rake it personally. 

      Thanks for stopping by Dementia Digest and sharing comments.

      ~Tamara

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