Podcast

Episode 69 - What Are The Stages Of Dementia?

Diane Carbo

29 Oct 2024 — 20 min read

Hi, my name's Diane Carbo. I'm at RN and the owner of caregiver relief.com. Today we are going to address what are the stages of dementia. The memory and ability to think and do routine things declines when you have a diagnosis of dementia, it does not happen all at once, and there's a progression of dementia that can be divided into seven distinct stages.

And then we have these stages. The first three are considered the early parts of dementia. The next three stages are four, five and six are the middle stages of dementia. And then we have the final stage, level seven. Stage seven, which is the end stage of dementia. So why do you need to learn about these stages?

It's really important to identify the signs and symptoms early on. So that you can assist those suffering with dementia and knowing not only what to expect, but options that you may have open to you. The earlier dementia is diagnosed, the sooner treatment can begin. So treatment can actually delay the progression of the disease.

Symptoms of thinking and memory problems. Changes in abilities are the stages of dementia. These symptoms generally follow a pattern that present progressively worsening to symptoms over time. There are times the progression of the disease is rapid and obvious. Those individuals may go from mild short-term memory loss to experiencing vivid auditory and visual hallucination.

Sometimes it feels like it's happening overnight. Others may suffer minor cognitive issues and a very slow progression over a period of 20 years or longer before they enter into the late stages or middle stages of dementia. Those stages require 24 hour care in the home, in a memory unit or in a nursing home.

The momentum for deteriorated brain functioning depends on several factors. The main factors of the patient's health and the type of dementia that's affecting the brain. There are several dementia testing examinations that can provide physicians with an accurate assessment of the patient's level of memory and thinking impairments to help determine which of the stage of dementia the patient may be currently experienced. They use what they call the seven stages of dementia, global deterioration scale. . That's big words, huh? But it's always talking about is dementia global deterioration is the deterioration of the brain cells in the brain. It was created by Dr. Barry Weisberg, and at the time he was the director of the Clinical Core of the US National Institute on Aging and a professor of psychiatry at New York University.

And he feels that stages one, two, and three are considered the pre dementia stages. And in the first three stages, patients may just experience mild memory and thinking problems or cognitive decline. Stage one of dementia can also be classified as the normal functioning stage. We're all at that stage at this stage of dementia progression.

A patient generally doesn't exhibit any significant problems with memory or any cognitive impairment at all. Stage two is also seen as the age associated memory. In this stage, you may observe occasional lapses of memory, such as forgetting where you placed an object, which we always do. Lord, I can't find the glasses because they were on my head, or I left the phone somewhere in the car or in my purse and didn't bring it in the house.

Forgetting names that were once very familiar is often another sign initially that there's things starting to. Oftentimes this mild decline in memory is merely normal age related cognitive decline. It can also be one of the earliest signs of a type of dementia. I wanna mention here that the difference between somebody who has normal age related dementia and or age related forgetfulness versus dementia is things like misplacing your keys. You go to put your keys away and you put them in the refrigerator or freezer, or you take something out of the refrigerator and you mean to put it in the oven and you put it in the freezer instead. Signs of dementia are still virtually undetected at this time through clinical testing.

But those worried about early onset dementia should raise those concerns to have further testing by the physician. Stage three of dementia is mild cognitive impairment. There's clear cognitive problems that begin to manifest in stage three. A few signs are they get lost easily. You have someone, I've seen this so many times.

A family member goes out and then they forget where they are and they can't find them their way home, even though they've lived in that area for forever. They're driving and all of a sudden they don't remember where they are. These are common problems that start at the stage three level of dementia.

They have noticeably poor performance at work. This is when a lot of clients that have been working, lose their jobs. They're over time there's been a deterioration and they start to lose their jobs. Many get fired through no fault of their own. They forgetting the names of family members and close friends can be an issue.

Now I can tell you, like when I used to call my sons when I was a young mother, I would go. My, my sons are named Jeffrey and Case. But I would go Bobby Paul, Jeffrey Casey. You just go through because you're used to calling your brothers and sisters and women. I'll tell you right now, we're classic multitaskers.

And when we do that really sets us up for problems of dementia in the future because I call somebody by the wrong name. I used to say, oh wow, you know who you are. But that's true. That's not a sign of dementia. That's somebody that's not focusing or is distracted. There's a big difference there, and that's something that people need to understand when they're thinking that, Hey, oh my God, I must have dementia, difficulty retaining information, read in a book or passage.

This again, If you have somebody that has chronic pain or has adult A D H D, I know for me, I'll use my son as example. My son Jeff, who had a serious pain condition. He was brilliant. He was a Korean linguist. He could read and speak Korean fluently. He was really good when he developed a chronic pain condition, he had difficulty retaining the information.

He had to read something over and over again, and I struggle with that too. Again, it's not dementia, it's pain or something else that's distracting us and interfering with our ability to concentrate. Again another sign of dementia may be losing or misplacing important object. Again, I put the key, you put the keys in the freezer instead of on the wall hanging place. You've misplaced it. Difficulty concentrating if they don't have other signs and symptoms or not other signs and symptoms if they don't have other medical conditions. That could be something to look into. Patients often start to experience mild to moderate anxiety as these symptoms increasingly interfere with today life.

People who may be in the stage of dementia are encouraged to have a clinical interview with a clinician for proper diagnosis. Complaints about often involve misplacing an object for getting names that were once easy to remember, or an ill, an inability to retain sufficient information after reading.

That allows the patient to comprehend the main point of the piece are all concerns. Here's another concern, I had a roommate and we were living, we moved to a new area. She had left an area she's lived in her whole life. I saw when she was out driving, she would panic because she didn't know where she was going and she didn't have the wherewithal to pull over, get the G P S out or stop and ask. She would just literally stop and say, where do I go next? When she was driving that sign that where she's having problems with dementia, the early stages of dementia, because she used her and she used that anxiety to, to hide what was going on. People diagnosed with the first three stages of dementia are well oriented to time and place but exhibited dealing. People often diagnosed with one of the first three stages of dementia are well oriented to time and place, but may exhibit the beginnings of denial, accompanied with minor anxiety over increasing symptoms. And that's what I saw with my old roommate. She was unable to learn new places to drive. It didn't wanna try new things, was just had an un uncomfortable feeling about it, so she moved back to her old area where she came from. Stages 4, 5, 6, and seven represent the actual dementia stages of the disease. Stage four is labeled the when moderate cognitive decline. Steps in this stage involves the following symptom.

They have problems with regarding personal history or history of family members. This is when they confabulate, which means they make up stories not for any reason that they really don't remember something. They're in denial about what's going on, so they make up a story to fill in the gaps. Another symptom of stage four is decreased ability to manage finances and make rational decisions about spending money. Oh, this is where QVS in home shopping network can be a problem. If you have a family member that is spending lots of money, they're watching tv, donating to every single cause that comes in their mail, or they see online or they're ordering things that they really don't need from Q v.

That's a sign that you've got a problem with somebody in stage four dementia. Difficulty with learning new or complicated tasks. Let's look at it. Let's say you go to a store and you purchase a table that you think you're able to put together when you get home. You've done it before. Your husband's done it, before your family member's done it, before you have clear very good instructions.

But you can't do it, that you just can't make the put it together. It's especially important to note if the patient has been able to do this in the past, that there's definitely something going on there. Dez is in denial and then withdraws when confronted with incidents of memory decline. Many people deal in denial.

People that are hard of hearing don't hear things, they withdraw. And that's a problem when you have someone with dementia because you don't know at first if it's, if they're hard of hearing, they're not listening to what you're saying, don't hear what you're saying. But they're also in denial that they can't hear or they don't understand what's being said to them, or they think that you're just crazy because they're perfectly fine.

Heard it a million times. I could say that the patients or your family member with dementia will know what day, year and time it is, but they may have difficulty recalling what events happened the day before. I've seen this a lot where you sit and you try to have help somebody bring just what they had for dinner the night before, or maybe they watched a special movie, they don't remember, or there was a birthday party they attend.

So it's nice when you have pictures that you can show them to remind them that, yeah, we did do this. Stage four, the mild stage of dementia. At this stage, individuals start to become apathetic. This is hard because they have socially withdrawn. They may show changes in personality and mood. They, there's denial of symptoms as a defense mechanism.

And it's commonly seen in stage four, they, the behaviors you're gonna notice are decreased knowledge of current events, difficulty remembering things about one's personal history or difficulty, again, handling finances, planning travel arrangements. Sometimes they just are blatantly disoriented, going outside, not knowing where they're going, or and they get anxious, very anxious. Now it's important to note that in this stage they still can recognize familiar faces and even travel to familiar locations. But in this stage they will often avoid any challenging situation in order to hide the symptoms or prevent stress or anxiety. This reminds me of one of my clients.

She from a very huge family, very close-knit family, and I met her because I marketed to her and she was a social worker. This family got together often, especially at the holidays. So over a period of years, the family noticed that Louise, the social worker, did not offer to host a family gathering at her home, which was very unlike her.

She always had some excuse. They noticed that she was not joining in the family gatherings as often as she used to too. The family thought she was just overwhelmed and work was getting too Louise's sister received a phone call one morning, Louise had fallen at work and was in the emergency. That's when Louise's sister went to her home to get a few things for her to take to the hospital where she found something very disturbing.

There were hundreds, literally hundreds of post-it notes all over the house. That was Louise's way to remind herself of things she wanted to do and accomplish. I will tell you, this is the stage where many lose their jobs. And sadly, the companies, the coworkers or even the boss never share the reasons for dismissal with the family.

I cannot tell you how many times I've heard a family member tell me that an old boss or coworker observed things that would've led to a early diagnosis, but they felt they couldn't say anything because of confidentiality or having a negative response that would come back to haunt them, which is sad because sometimes it's better not to be politically correct and just do the right thing because it can make a difference in diagnosis and treatment.

Stage five is considered moderate or middle stage dementia. Patients in stage five require some help in order to carry out their activities of daily living. The distinctive sign for stage five is the inability to remember a major life detail, such as you may not remember the name of a close family friend.

You may not remember that somebody has died. You still think that they're still alive. They're no longer able to recall their home address. They may recite old address from very long ago instead. I will tell you that if you have a person in your family that doesn't remember the death of a person, a loved one, it's really important not to remind them of that.

I know you're not gonna understand this, but people in dementia live in the moment, so every time you tell them that their spouse has died or a sister has died, they grieve all over again as if it was the first time they had heard that information. So when you have someone who, doesn't remember a family member has died or a loved one that has died, I think it's really important that you just tell them, oh, you know what?

They're going, they're not here right now. They'll be back in a little bit and then redirect them to another topic or activity. I have a book, Dementia Behaviors, and in it I discuss that approach. While patients may become disoriented about time and place, they also have trouble making decisions and forget basic information about themselves.

Birth dates, telephone numbers, address. While moderate dimension can't interfere with basic functioning, patients still at this stage don't need help with things like going to the bathroom or eating. They're still a basically able to tell you and get to the bathroom and eat without any much assistance.

They may need some encouragement, but they're able to feed themselves well. They do not need help with personal hygiene. Stage five patients exhibit difficulty choosing suitable weather appropriate clothing to wear. . I can't tell you how many times I've seen my clients wear mismatched shoes or mismatched socks or wear a winter coat in the summer, and this is very common at this stage of dementia.

It's just sweet when you see these little old ladies or little old men all hunkered down in their winter and it's in the middle of summer while the rest of us are sweating and they're freezing patients also have the ability to remember their own names and generally the names of the spouses and children.

However, they will frequently mix up family names and faces. An example of this for me is I was a young woman. I think grandma was 98. My grandma Smith was 97, 98 and they, she had her pacemaker go bad and my dad and his brother had decided that they wanted it to be redone, which I wouldn't have done based on her diagnosis of Alzheimer's and her age, but I respected that.

Anyway, I lived away from home very far away, so I came into town and went to the hospital where my grandmother was having her procedure and she was probably in between the fifth and sixth stage of dementia. And everybody kept telling me, my family, because it had been a while since I had been home, that she wouldn't remember me at all.

And I was prepared to be brokenhearted because my grandma and I were really close. She was waking up from her light sedation from her procedure and she looked over at me because I was sitting on waiting for her to wake up and she said to me, oh my, you look like my Diane. And I said, I am your Diane and we both cried.

Still a fond memory because my giggle, because my family members were determined to prepare me, that she wasn't gonna remember who I was. But one of the things you're gonna learn with patients is they have long-term, within their long-term memory, lasts for a really long time. It's the short-term memory that challenges them.

And I was clearly had spent so much of my time as a child, young girl, and teenager with my grandma. She remembered me and I was grateful for that. Stage six is moderately severe. Patients begin forgetting names of spouses, children's, or siblings. And this is hard for so many of the family and the family caregivers.

The cruel part of this disease is there are moments when you can look into your family member with dementia's eyes and you can feel a connection. There's a spark there. There's a light behind those. They remember who you are, and for a brief moment, you experience joy. It also is cruel because you're now hopeful that maybe the disease isn't robbing them of their memories.

Then it's just as fast as it happened. The next moment that flicker of lights gone out and you stare and you see a blank stare, they no longer know who you are. This is devastating for so many family members. The hope they felt is gone. That's why they call it Alzheimer's disease.

The long goodbye because of these types of moments, for the most part, the patient will remain forgetful and unaware of recent experiences or events happening that they've had. They will respond with confusion to questions about the year, season or where they are. They may be able to count 10 backwards and forwards, but it's gonna be a challenge if they are able to complete that task.

This is the stage where they may develop continency. This is just a direct result of declining organ functioning. Sleep is often disturbed at this stage. Patients often awake up at night, many wander around their home with no idea of what they're doing or where they're going. At this stage, patients usually know their own name, but if they were married more than once, they might use previous names.

If they're talking about their last name, when asked. So I would be Diane Smith Rock Fogal Carbo. Now who am I gonna be if I get dementia? I'm not sure. In addition, symptoms seem to worsen at night due to the disruptions in the circadian cycle and normal body temperature. A condition occurs called sundowning, and I will discuss what is sundowning in a later topic a later.

Caregivers and family members at this stage should watch for hallucinations or delusional behavior. I had this one, I know I've shared this before, but I did have this one little old lady and delusions for those that don't know are false beliefs and you can't argue with somebody that is delusional because they strongly and firmly believe that what they are saying is true.

I had this little old lady, she had cute delusions. Now, they're not always this nice because they can be paranoid, think that you're stealing from them. They can be sexual. They think they're jingle up, and then every woman's gonna want them. Really? I've heard them all. I've heard them all, but my sweet little old lady was brought in because her family said she was kept talking about her boyfriend. And if you didn't know that she was in a psych facility for her delusions, you'd never know that there were delusions because she seemed so with it. She talked about how much her and her boyfriend talk all the time and how much they like to spend time together, but he travels a lot, but they keep in touch.

And I said to her, how do you do that? Because you're in here in the hospital. How are you going to keep to touch with him? Is he gonna be calling here? And she goes, oh no. And she put her hand up to her ear in a fist and put her ear and she proceeded to call him and talk to him. That's how she communicated with her boyfriend, through her fake phone on her hand.

Again, we have obsessive behaviors and symptom. Anxiety, aggression and agitation are tough at this time. You're also gonna see some distinct personality and behavioral changes saying redressing run around naked, peeing in the bushes, peeing in the plants. It's a challenging, very challenging stage of dementia and the paranoia. Lots of families have adult protective services called because their family member feels that they're stealing from them. Taking everything. This is when they wanna change their wills and all this and that. It absolutely cannot happen because they're not in the right mind. This is when they also, many of them get very aggressive.

And for those that think that only men get aggressive. Lord have mercy. I've been with some tiny little itty bitty little old ladies. They were as strong as everybody. We used to say they must be possessed because where do they get this strength and energy to fight us and they do. They just really do.

Depression and anxiety is also problem during this stage of dementia. I'm gonna mention that obsessive compulsive actions may develop at this time, and it could be involved, it could be anything as much simple as dusting a table or dusting or wiping a spot on the mirror for hours at the time, even though it's clean. Don't discourage these kinds of behaviors because these O C D behaviors often arise in stages of dementia because it relieves their anxiety generated by the inability to distinguish rational behavior from irrational behavior.

So if they want to clean, let 'em clean if they want to. I've had patients that love to pound nails. Of course you don't use, you use kitty hammer, plastic hammer and nails, and plastic nails but there are things you can do to encourage that kind of activity just to keep them busy because it provides an activity.

That will relieve some of that anxiety, which is really important. Stage seven is severe dementia or end stage dementia. Along with the loss of motor skills. Patients are going to slowly over time, lose the ability to speak and to swallow during the course of this stage and in the final stage, the brain seems to lose its connection with the body..

Severe dementia frequently entails the loss of all verbal and speech abilities. You'll hear them grunt or groan or make a sound, but as far as words coming out, they're no longer able to form words, and the patient will need help with walking, eating, and using the bathroom. This is the stage where you have to feed your patients if they eat, and it may be that they make this sound that's a form of archived dyskinesia.

It's a side effect. The patient will need help with walking, eating, and using the bathroom. They're gonna need two people to walk to support them because they'll be off balance. They may not have the ability to put the hand to mouth to feed them, so they will need to be fed. Swallowing and chewing, this is a time when many families go to a chopped food or soft food or pureed food and you have to feed the patient.

And using the bathroom means putting time for depends, diapers and a regular routine to the bathroom. This is also the stage where they become very difficult to shower stage five too, but when they become combative because they don't want to eat. No patients will need help with walking, eating, and using the bathroom.

Gonna take two to walk them because they're heavy duty, fall risk by now. Eating, they're unable to put their hands to their mouth. They may have for lost the ability to swallow or to chew. So you need to look into swallowing and feeding issues, which may include changing the diet to soft or to puree. And this is when you use a lot of protein supplements as well.

And using the bathroom, this is when they fight to be bathes and stuff. That's when you start to learn to do, instead of battling while bathing, you clean them up when you toilet, you want me to wash their back while they're pottying. Then you wash their bottoms later on and in another room when they're sitting, you may wash their feet, soak their feet and do their nails and stuff.

So you learn over time. Choose your battles wisely and and change the way you take care of them as far as personal hygiene. Now, here's another thing that happens, that in the last stage of dementia, they have severely diminished neurological reflexes. They could be very rigid or they could be just nonresponsive, and they may not move unless you put them in a certain position.

Of course this is the stage where rapidly weight loss occurs because they do lose the ability to swallow, which is hard. This is why I recommend that people that have already put in place an advanced directive, because this is where the families are gonna struggle. Whether they wanna put a feeding tube in or not.

I never recommend a feeding tube, but that is a personal choice for everybody feeding tubes, force feeding. And it can cause more complications and harm than it does good. But that's for another topic. And that's why you also wanna know when you wanna initiate hospice, when you're dealing with dementia, do you wanna do it when they go into end stage dementia or do you wanna have hospice come in earlier to support.

There's all kinds of topics like that we will cover over the next year on our Dementia Caregiver Relief podcast. I'd like to end this podcast by strongly recommended that getting a diagnosis early, you may be able to seek medical treatment quickly and delay the onset of later stages. The more aware you are of these stages, the quicker you'll be able to react, seek help, either for yourself or for a loved one.

The next lesson I'm gonna talk about is causes of dementia. I hope you'll join me then. I'm Diane Carbo, RN of caregiver relief.com. If you're a family caregiver, please know you are the most important part of the caregiving equation. Without you, it all falls, so practice self-care every day. Learn to be gentle with yourself because you are worth it.