Ease uncertainty by understanding the stages of dementia
A big challenge and source of stress in Alzheimer’s disease and dementia is the uncertainty.
Nobody can predict what will happen with your older adult’s cognitive ability, behavior, or preferences or when these changes will happen.
But understanding the 3 stages of dementia – early, middle, and late – gives a sense of what to expect and can be used as guidelines to plan for the future.
We explain the 3 dementia stages, common symptoms in each stage, and why your older adult’s symptoms don’t always fit into these stages.
The 3 stages of dementia
Typically, these stages apply to all types of dementia, including Alzheimer’s.
But it’s important to remember that someone with dementia may not always fit in a specific stage or go through every stage because the progression of dementia is unique and different for each person.
Early – mild dementia
In the early stage, a person with dementia might still be able to live independently. They might still be able to drive, work, and socialize.
However, they will probably have memory lapses, like forgetting familiar words or the location of everyday objects.
Other people may start to notice that the person is having difficulty, experiencing memory loss, or that something “seems off.”
In a thorough medical exam, doctors might be able to detect problems in memory or concentration.
Symptoms may include:
- Struggling to find the right word or name
- Finding it difficult to do everyday tasks in social or work settings
- Forgetting something that they just read
- Frequently losing or misplacing things
- Increasing trouble with planning or organizing
- Making decisions with uncharacteristically poor judgement
Middle – moderate dementia
The middle stage of dementia is usually the longest and can last for many years.
As dementia progresses, the person will need an increasing level of care.
In this stage, you might notice that they get words mixed up, are often frustrated or angry, or act in unexpected ways, like refusing to bathe.
Damage in the brain can make it difficult to express themselves and do everyday things.
Symptoms may include:
- Forgetting things that happened recently or major events in their life
- Being moody or withdrawn, especially in social situations or when something requires too much thought
- Not being able remember significant things like their address, telephone number, high school, etc.
- Getting confused about where they are or what day it is
- Needing help choosing appropriate clothes for the season or occasion
- For some, trouble with incontinence
- Changing sleep patterns, like sleeping during the day and being restless at night
- An increased risk of wandering and getting lost
- Personality and behavior changes, including paranoia, delusions, and compulsive, repetitive behavior like hand-wringing
In the final stage of dementia, people progressively lose the ability to engage in the world, to hold conversations, and to control their muscles.
They may still be able to talk, but communicating and expressing thoughts becomes difficult – even for something basic like pain.
Their memory and cognitive skills continue to get worse and you might see significant personality changes or the fading of personality altogether.
At this stage, people with dementia typically:
- Need 24/7 help with daily activities and personal care
- Have increasing difficulty communicating
- Lose awareness of recent experiences and their surroundings
- Gradually and progressively lose physical abilities, including the ability to walk, sit, and swallow
- Become more likely to develop infections, especially pneumonia
A person with dementia doesn’t always fit into one stage
Dementia affects each person in a unique way and changes different parts of the brain at different points in the disease progression.
Plus, different types of dementia tend to have different symptoms.
For example, someone with frontotemporal dementia may first show extreme behavior and personality changes. But someone with Alzheimer’s disease would first experience short-term memory loss and struggle with everyday tasks.
Researchers and doctors still don’t know enough about how these diseases work to predict exactly what will happen.
Another common occurrence is for someone in the middle stages of dementia to suddenly have a clear moment, hour, or day and seem like they’re back to their pre-dementia abilities. They could be sharp for a little while and later, go back to having obvious cognitive impairment.
When this happens, some families may feel like their older adult is faking their symptoms or just isn’t trying hard enough.
It’s important to know that this isn’t true, it’s truly the dementia that’s causing their declining abilities as well as those strange moments of clarity – they’re truly not doing it on purpose.
Knowing the stages of dementia helps you plan
Even if the stages aren’t exact and symptoms can still be unpredictable, being able to plan ahead is essential.
The truth is that Alzheimer’s and dementia care is expensive and time-consuming. Being financially prepared for increasing care needs is a necessity.
On an emotional level, having an idea of what symptoms to expect helps you find ways to cope with challenging behaviors.
It also gives you a chance to mentally prepare yourself for the inevitable changes in your older adult.
Recommended for you:
- 3 Ways to Respond When Someone with Alzheimer’s Says I Want to Go Home
- Therapeutic Fibbing: Why Experts Recommend Lying to Someone with Dementia
- 4 Ways to Respond When Someone with Alzheimer’s Keeps Repeating Questions
By DailyCaring Editorial Team
Image: Bowman Dental
I’m not sure if I’ve stumbled across a useful item, or this has been addressed and I hadn’t read about it. My husband of 42 years has Parkinson’s dementia, and the past year has become an increasingly difficult challenge of keeping him in bed at night. When he gets up and wanders about the house he is usually chasing the ‘oompa-loompas’ (what we call his hallucinations). One night he wanted to get into bed with me in the spare room, but since the bed is only a twin, I suggested he bed down around the corner on the futon. He slept the rest of the night. So I was bouncing this off a friend; how I thought the futon acted like a thunder jacket on a dog, and wondered how he would do with a weighted blanket. She had one she wasn’t using, so his bed now has the weighted blanket, and he’s getting up fewer times at night during the week. I would say what use to be every other night, is now every third night, which is good for me because I need the sleep for my own health issues. I’m not sure how he will do once the weather warms up again, but I’m thrilled this is helping him sleep.
Thanks for sharing your tips and experience! Weighted blankets are wonderful for many people. We’ve got an article about it here – Weighted Blankets for Dementia Improve Sleep and Reduce Anxiety https://dailycaring.com/weighted-blankets-in-dementia-care-reduce-anxiety-and-improve-sleep/
Some are marketed as “cooling” weighted blankets like this one at https://amzn.to/3zEIDtz , so that might be a solution for the warmer months.
My husband suffers from delusions. He believes other people, he does not know them, come and go in our home at my behest just to frustrate him. He accuses me of kicking our daughter out of the house due to jealousy. Our daughter is married, with children and never has been living with us since she left college. He thinks she came and lived with us to take care of him when I am away. We have been married nearly 56 years and none of this is true.
We’re sorry to hear about this challenging situation.
We’ve got some suggestions on how to handle hallucinations/delusions here – 10 Ways to Respond to Dementia Hallucinations in Seniors https://dailycaring.com/10-ways-to-respond-to-dementia-hallucinations-in-seniors/
These articles may also be helpful:
– 8 Ways to Deal with False Dementia Accusations https://dailycaring.com/8-ways-to-deal-with-false-dementia-accusations/
– Responding to 4 Common Dementia Accusations: Stealing, Poisoning, Being Held Prisoner https://dailycaring.com/responding-to-4-common-dementia-accusations-stealing-poisoning-being-held-prisoner/
My aunt is experiencing early signs of dementia and it worries me a lot. It doesn’t run in the family so we are all confused as to how this is happening, but I guess it can happen to anyone. Thank you for sharing this so we know what to expect. Do you think there is any cure? I read that hearing aids can help with dementia here, https://www.ez.insure/landing/2019/11/hearing-aids-and-dementia/ . Thoughts on it?
The best thing to do is to have your aunt get a thorough checkup from her primary physician. It’s possible that she has dementia, but it’s also possible that she could have a treatable health condition that causes dementia-like symptoms.
We share more info about treatable health condition that cause dementia-like symptoms here:
– 8 Treatable Diseases That Mimic Dementia https://dailycaring.com/8-treatable-diseases-that-mimic-dementia/
– 7 Treatable Health Conditions with Dementia-Like Symptoms https://dailycaring.com/7-treatable-health-conditions-with-symptoms-similar-to-dementia/
We’ve also got an article about how dementia is diagnosed here – How Is Dementia Diagnosed? A Geriatric Doctor Explains https://dailycaring.com/how-is-dementia-diagnosed-a-geriatrician-explains/
And you can find out more about how hearing loss can increase the risk of dementia here – Reduce Dementia Risk by Treating Hearing Loss https://dailycaring.com/treating-hearing-loss-reduces-dementia-risk/
My wife of 52 years has been diagnosed with late stage dementia. One of the things she does all day is to walk through our home constantly, so in order to get her to stop walking, I take her on rides in our car. It seems to calm her down, but just as soon as we return home, she starts walking again. I love her so much, but sometimes I lose my patience with her and even raise my voice. Another thing she does is to rearrange the pillows on our couch constantly. I miss the woman I married, simply because she can’t carry on conversations any more.
It’s wonderful that you’ve found that going on car rides is a helpful and pleasant distraction. Perhaps you could find additional activities that could help her stay busy and give a sense of accomplishment. That could help reduce her need to walk and rearrange, which sounds similar to rummaging behavior.
These articles may have helpful suggestions:
– 10 Fun, No-Fail Activities for People with Dementia https://dailycaring.com/activities-for-people-with-dementia-10-fun-no-fail-ideas/
– 9 Ways to Manage Dementia Rummaging Behavior https://dailycaring.com/9-ways-to-manage-dementia-rummaging-behavior/
– 4 Reasons Dementia Activities Are Important and 5 Ways to Adapt Everyday Tasks https://dailycaring.com/4-reasons-dementia-activities-are-important-and-5-ways-to-adapt-everyday-tasks/
Caring for someone with dementia is a challenging role and it’s understandable that you might lose your patience, especially with repetitive behaviors. This article might be helpful in managing that – 4 Ways to Respond When Someone with Alzheimer’s Is Repeating the Same Thing Over and Over
Another thing that might help with dealing with the changes is to join an online caregiver support group. Here are our top recommendations – 11 Private Support Groups for Caregivers on Facebook https://dailycaring.com/support-groups-for-caregivers-on-facebook/
I used to give my Mom the towels to fold when I did the laundry and also the socks. It took her time to match the socks but it gave her a sense of helping out. Sometimes I would rearrange the socks and give her the sock drawer to arrange them again! She like that activity, Instead of feeling frustrated, find ways to lighten the mood with a smile and kiss – she’s still there inside and needs your love. You need a break too – Seniors helping Seniors is a great organization.
I think my mom has this. My dad never knows what she is going to be like when she wakes up in the morning. She is usually good by the afternoon. She gets mad at the littlest things and then won;t talk to him. She hides who she is really well in front of others. She also threatens to leave my dad so he can’t have the conversation of having her checked out or she would leave. She would not be able to live on her own. So he doesn’t know what to do. She is healthy otherwise so he cannot take her in. He will not try to deceive her to get her into the doctor and get her checked out. She has been like this for at least 8 years. No memory loss at this point that I know of. Although she did do something strange today. She said a middle aged woman in an ad is always the mother. I asked her what show and she said them all. This person is not well known and I have not seen her in any show. That’s not a good sign. I just do not know how to help my dad.
Without having a doctor examine your mom, it’s impossible to know what could be causing her symptoms.
For example, there are many treatable health conditions that could cause dementia-like symptoms. Or, it is possible that she has Alzheimer’s or another form of dementia.
Typically, an annual wellness checkup at the doctor is recommended and is covered by insurance. Maybe you and your dad could present this as not missing out on a free benefit that comes with paying for health insurance?
And then, communicate your concerns with the doctor ahead of time so you won’t need to discuss it in front of your mom at the appointment. Then, the doctor can use the exam to assess the situation.
To better understand and manage these types of behaviors, we have a number of articles in our Alzheimer’s & Dementia Challenging Behaviors category – https://dailycaring.com/tag/challenging-dementia-behaviors/
A very different Alzeheimers scenario where they were telling people his $100k cash, alleging he wins $10,00 to $20,000 from the lottery every year for over 20 year money from the lottery was stolen, however there was no lottery winnings. Because he was old they believed him we were unlawfully arrested. Fighting this dumb case in court, how can you be arrested for something that NEVER existed so a theft never happened
Upset and said , never helping anyone again.
So sorry this happened 🙁 Hopefully the authorities will soon realize that he has Alzheimer’s.
My grandmother is 81 yrs old and is in the last stage of dimensia.. she’s has been battling this since 2014 and just gradually progressed and got worse. She does walk anymore she’s in bed all the time now and recently she’s been refusing to eat and is losing lots of weight and I can’t understand anything she says anymore. It’s soo heart breaking because that’s my mom she raised me. It’s hard to look at her and see all the memories and love we have and for her not to know me or anything that Wad there. From my age 23 to now 28 this is by far the hardest thing I’ve ever had to deal with especially when her kids are not there and I’m doing this on my own! I feel like I’m stuck in a room and can’t get out! I just want her with me and for her to tell me she loves me and it will be okay. I don’t know what to do
I’m so sorry this is happening. It’s certainly a difficult and heartbreaking situation.
If you haven’t already, check with her doctor to make sure that these recent changes aren’t caused by something that’s treatable, like an infection or other health condition.
Unfortunately, if she is in the end stages of dementia, the only thing you can do is to keep her as comfortable and happy as possible. And find ways for you to cope during this difficult time. Talking with others can provide helpful emotional support — lean on close friends, family, faith leaders, or a caregiver support group.
These articles offer suggestions that may help you comfort her and yourself:
— 5 Myths about Dying https://dailycaring.com/5-myths-about-dying/
— 11 Caregiver Support Groups on Facebook You’ll Want to Join https://dailycaring.com/11-caregiver-support-groups-on-facebook-youll-want-to-join/
— 8 Benefits of Caregiver Support Groups https://dailycaring.com/8-benefits-of-caregiver-support-groups/
— This Compassionate Book Helps Us Understand Death and Dying https://dailycaring.com/this-compassionate-book-helps-us-understand-death-and-dying/
My mother has dementia and is probably in stage 2, Christmas was overwhelming for her, she says she cant hear conversation but we suspect that she just does not comprehend what is being said. Over the festive period she became considerably confused, couldn’t walk properly, wouldn’t eat (she says she has lost her sense of taste) – it was then established on a trip to her doctor that she had a slight UTI and chest infection and is now on antibiotics. She is cared for predominantly by my 90 year old father who is now not in the best of health himself but is reluctant to bring a carer into their home. My brother and I are both local however we work and cannot be there all the time although do as much as we can for them cooking meals, shopping, helping them organise menu’s (they have a wonderful woman who comes and does the cleaning and laundry each week) but there will come a point when she will need help with personal care, they are both resistant to having anyone else in the house. We keep trying to find a way forward that will help them both but are becoming increasingly certain that their current situation is not sustainable. Has anyone else come up with similar concerns?
The holidays can definitely be disorienting and tiring for older adults with dementia. In case it’s helpful, here are some tips for future holidays — 5 Best Alzheimer’s Holiday Tips for an Enjoyable Season at https://dailycaring.com/5-best-alzheimers-holiday-tips-for-an-enjoyable-season/
The UTI also probably added to her confusion and unusual behavior (more info here https://dailycaring.com/alzheimers-or-urinary-tract-infection/)
It’s great that they already have great help from you and your brother and the weekly housekeeper. It’s also wise to be thinking ahead to plan for your parents’ need for a higher level of care. It can definitely be tough to convince someone to accept a more personal level of help.
We’ve got an article with suggestions that may help — When They Say No: 8 Ways to Introduce In-Home Care for Seniors at https://dailycaring.com/when-they-say-no-8-ways-to-introduce-in-home-care-for-seniors/
I have exactly the same thing going on with my parents. Mom has dementia and dad , who is 90 too, is the primary caretaker with me being there twice a week to help with laundry and some meal prep and give mom a shower. I do , also, work full time evenings so I am available to be there during the day. My bother is gone a lot so a constant from him is not there. I just started introducing an extended family member once a week for two hours. My dad is resisting already and says mom feels like she has to entertain her and wants to decrease the time down already! I’m frustrated but continuing on with the plan. He has already resisted a senior care service coming in, so here we are. Some of the neighbors do pop in. I just wait for the ball to drop and take one day at a time. Always feel guilty but want to keep them at home as long as possible.
It’s great that you’re getting some help. Your parents may resist at first, but over time they should become more used to having someone else help out. You could explain to your dad that the other person is helping you (rather than him) by helping with certain tasks or reducing your worry when you can’t be there in person.
This article may also have some helpful suggestions: When They Say No: 8 Ways to Introduce In-Home Care for Seniors https://dailycaring.com/when-they-say-no-8-ways-to-introduce-in-home-care-for-seniors/
There are always a way out. I am a stay in carer and will pray for a good option for you.
My husband went through all the stages of Dementia. I lost him in Oct 2018 terrible thing
I’m so sorry for your loss 😢💔
I just found out 2 days ago I have dementia 72 ADHD have been on mental health drugs for 32 yrs.today I just took 1 it’s to keep me focused. I am so upset.I am a young at heart person. I was told I have 5 yrs to Li ve.
Any suggestions please I am a wo man
We’re sorry to hear of your diagnosis. It’s unusual that a doctor would give a specific window for the remainder of your life, based only on a dementia diagnosis. Though they may need assistance, many people can live for many years with dementia.
You may want to see another doctor to confirm the diagnosis and to find out about potential treatments or lifestyle changes that could improve your quality of life and longevity.
I would ask for a second opinion .I don’t think the Doctors give that kind of prognosis .Many things can change in that length of time. Everyone is unique .There is no set time to get through the stages of dementia.. I hope all goes well for you.
I am in florida. It’s august. Inside the house it’s 95 degrees. My mother won’t run the ac. Every time I turn it on she turns it off. Any ideas. I pay the power bill.
I’m so sorry, that must be so frustrating. Does she have dementia? Or is she just not feeling the heat? Many seniors tend not to notice that they’re hot until they become ill from heat stroke or dehydration. It could be that she doesn’t feel hot even if her body truly is. If that’s the case (and she does not have dementia), perhaps you could let her know that it’s too hot for you and that you’ll give her a shirt or light towel to cover herself from the draft of the A/C. It’s possible that the cool air might feel unpleasant to her. Of course, you don’t want her to overheat either, so it would need to be a light covering. In case it’s helpful, here are some additional suggestions for preventing heat stroke in seniors — https://dailycaring.com/6-things-you-can-do-to-prevent-heat-stroke-in-seniors/
If she does have dementia, you may need to tell some fibs and use distractions to get her to stop adjusting the air conditioning in addition to making sure that the cold air isn’t causing discomfort.
There are locking covers that you can get to attach to the wall and restrict access to the controls. You could install one and say that the electric company is forcing everyone to install them and keep the temperature at a certain level (or another story that she might believe, but something to make it seem like changing the temperature is no longer an option for either of you). You could also disguise the A/C controls by placing a black covering over it so she cannot see it. People with dementia often avoid large black areas because it seems like a hole. And when it seems like she wants to adjust the temperature, try to distract her with a favorite activity or a snack or beverage.
If your mother is the type to follow instructions from authority figures, you could say that the doctor has sent a prescription for a certain temperature because people across Florida are getting sick from the heat. You could even “write” the prescription and show it to her, pretending that you got it in the mail. Similarly, you could say that the police have told all homeowners to set a lower temperature because of heat related problems and they will fine/arrest/etc people who do not follow instructions.
Sometimes you need to get creative to find scenarios and explanations that your mother may accept. And if she has poor short term memory, you’ll be able to try different approaches to see which ones work better.
If your mom take blood thinner pills she will be cold. It thins their blood. I went through this with my mom and although hard to do, I decided to buy a transportable AC for my room. Hope this helps. I do feel your frustration….GOD SPEED!
Hi my mum is in the later stages unfortunately,but I have kept her at home and pay privately for sits to be in place for when I’m at work, but the district nurse is now saying mum needs to go into a host and I’m not happy about it as I think this will make her abilities nonexistent, she doesn’t have much but we use a standing steady for mum how has great upper arm and leg strength, can you advise if I can object to this as I am her main carer and I have P.O.E. mum has had this for 9years coming.
It sounds like you’ve been doing a wonderful job caring for your mum ❤ As long as the situation is safe, where your mom lives is your decision. The nurse can make recommendations, but it’s your decision to make since you are her Power of Attorney. (It sounds like you could be in another country, so laws may be different, but generally this is what is true in the U.S.) It may be helpful to have a conversation with the nurse to understand why she’s making this recommendation so at least you know why she’s saying that.
From my experience, keep your family member in a familiar routine and environment, as long as she is monitored 24/7 when required
She will thrive better then being placed in unfamiliar surroundings where individual care is limited
My concern is for you
Who is insuring your needs are met
Working all day then looking after someone else during your time off is not healthy for you
If you can share the responsibility or have another insuring you are getting the emotional support you need then it’s ok
We all need me time
We cannot help others if we are not looking after ourselves
I’ve been receiving daily care articles for several months. Although they are helpful, I have yet to read any articles on Alzheimer’s and alcoholism.
This is particularly difficult differentiating the effects of alcohol and the changes due to dementia. My husband refuses to quit drinking, but has sincerely tried to curtail his alcohol use with minimal success. Any recommended articles???? Thanks
I’m so sorry about the situation. That’s an important topic and one that we’ll be addressing in the near future. In the meantime, hopefully our articles about managing and reducing dementia symptoms and behaviors will be helpful — http://dailycaring.com/tag/difficult-behaviors/
My aunt has become very forgetful over the last year. She cannot remember for five minutes what has just been talked about. Two of her sisters go to doctor with her and swear dr says she is only depressed. My aunt has land and savings and they dont want her diagnosed with dementia until a former will is done. One aunt forged her name on a will leaving land to her son and granddaughter. Her granddaughter is notary. I am nice and have no say even though i spend a lot of time there. I dont know how to help my aunt.
This is a tough situation. Your relatives could truly be trying to do what they think is best for your aunt or it could be a case of financial elder abuse. It sounds like your aunt should have a full medical exam by a doctor who is experience in dementia care to rule out any treatable causes of dementia-like symptoms or to be diagnosed with dementia.
But if you are not her Power of Attorney or involved in her care, you don’t have the right to force this to happen. You’ll need to work with your relatives as best you can. You may want to start by having a private conversation with one person to express your concerns and see how they respond. It’s possible that they don’t notice her symptoms or want to accept that something is going on with her health.
If you feel strongly that they’re taking advantage of your aunt and trying to steal her money, you may consider reporting them to Adult Protective Services. However, this is an extreme step and will most like cause significant damage to your relationships. Plus, the outcome isn’t guaranteed. Adult Protective Services will investigate the situation and you may or may not agree with their determination.
More info here:
I’m not sure what stage my husband is in. He was diagnosed 3 yrs ago this month. He keeps up with current events and can carry a conversation. He says he really has to stop and think about what he has gone into a room to do or how to do it. He does struggle with words now. What he does have the most trouble with is his visual perception, trying to get dressed, zipping a coat, figuring out what to open the sliding door. Something can be right in front of him and he doesn’t see it. His eye exam is fine, he only needs cheater glasses. He was always the one that knew how to do the television. Now he can only do turn it on and off and surf channels. Anything else with mute, DVR, rewind etc. will confuse him.
How to convince patient to take a bath or shower? Daughters can’t get her to cooperate and be willing to bathe.
It can definitely be tough to get someone with dementia to bathe. We’ve got a helpful article with many suggestions that will hopefully help — http://dailycaring.com/7-tips-to-get-someone-with-alzheimers-to-take-a-bath/
My wife is well into stage two, actually needed to work on her for ere shower this morning. She still thinks she can drive, however she cannot see past the hood of a car, and her head is always pointing towards the ground, she is even dangerous in the electric carts at the stores. Cannot tell you how many times she has run into me and others, also no display is safe if she is around.
I will care for her as long as possible, but she may end up in a care facility at some point.
I’m so sorry about your wife’s dementia and decline in abilities. It sounds like you’re doing an amazing job caring for her!
I am sorry to hear about your wife. Have you done any reading on this and do you have family that can help.
Remember that care facilities are very expensive. If you have the right knowledge and support, she may be able to stay at home.
That’s very true, the unfortunately reality is that long-term care is expensive. Hiring caregivers to care for someone 24/7 in the home is incredibly expensive and compared to that, assisted living / nursing care seems like a bargain. If the family is able to provide most of the care, it’s more cost effective to care for the older adult at home. But if their care needs become more than the family can safely handle at home, moving to a care community may be necessary.