How do you know that a person is the last stages of Alzheimer's?

21 answers | Last updated: Oct 27, 2017
A fellow caregiver asked...

How do you know that a person is the last stages of Alzheimer's? What are the signs of the final stages? Please get back to me, it seems like no one will answer my questions.

Expert Answers

A social worker and geriatric consultant who specializes in dementia care, Joyce Simard is based in Land O' Lakes, Florida, and in Prague. She is a well-known speaker and has written two books, one focusing on end-of-life care and the other, entitled The Magic Tape Recorder, explaining aging, memory loss, and how children can be helpers to their elders.

When a person with dementia reaches the advanced stage of Alzheimer’s disease, he or she usually displays the following physical and cognitive signs:

  • Unable to walk even with assistance
  • Requires total care with bathing, dressing, and grooming
  • Verbal skills are limited; the person may just be able to say a few words but is unable to have meaningful communication
  • May not recognize familiar faces
  • Incontinent of bowel and bladder
  • Poor appetite, needs cueing at meals or needs to be fed

It's important to remember that each person is an individual and may not experience all of these symptoms. These are the most frequent signs that a person is in the last or advanced stage of a dementing illness.

Community Answers

The only daughter answered...

I don't notice the changes as much as people that don't see my mother everyday. I'm with my mother 24/7 and she has lived with me for the past 5 years. I know she has gotten worse. Today I looked at some pictures I had taken of her 3 years ago and I couldn't believe the difference not only in her weight loss but also in her facial expressions. I look at her now and it's like she has a certain stare that goes right through you. Her doctor said that she is in the late stage of alzheimers. She needs help with eating, bathing,grooming, and her incontinonce but she is probably healthier than I am. But she has needed all this help for the last 4 years. So to say she is in the last stage has me wondering also how doctors can catagorize what stage the patient is in. Do they really know or just guessing?

A fellow caregiver answered...

I think the stages are just guidelines for the medical staff to use and to give the family an idea of what might happen. In the last stage of Alzheimers I have found that the patient eats less and less. Their mouth starts to clamp down. Medication and nutrition starts to be a problem. They sometimes live on supplements such as Ensure. The question of a peg tube will be brought up as well as IV therapy for dehydration. Hopefully your love one has advanced directives. As they lose weight they become more unresponsive. Hospice many times will be called in to help the patient pass on with dignity and respect and give support to the family.

Johnc answered...

The official descriptions that the end is near are based on a collection of averages. Most discussed are how the average person with Alzheimer's will wind down. But each one is unique. Doctors often don't document what caused the actual death very often. They just put down what is expected. Usually things like low sodium, low potassium, congestive heart failure, kidney failure, systemic organ failure etc and add Alzheimer related to the report. So gathering reliable information is almost impossible. It depends on what type of care the person is getting. It depends on what areas of the brain are effected. The human body has an uncanny ability to fight death. I wish there was an easy answer I could give you. There isn't one.

Doctors know a lot less than they want you to know. Very few spend more that a few minutes with an Alzheimer's patient. All they see are little snapshots of the disease. They base their knowledge on poorly sourced information. Hearsay from other doctors and most have little time or dedicate little time to keep up with cutting edge research. Most seldom or never read medical journal publications to keep up on the latest findings. Often when they tell you something new they heard it from another patient telling them what they discovered. Doctors are also protective of what they know and often don't share amongst themselves. This is true of other diseases also.

As the disease progresses most or all memory related abilities degrade and they become totally reliable on someone to do everything for them. They may constantly stare. This may not indicate anything. They sort of trance out. Almost like a day dream state but deeper. They may not respond to talking or normal noises. You can look right in their eyes and be a foot or two in front of their face. You can talk to them and they seem not to respond. They often drift in and out of this trance like state. They may also come out of it if there is an unusual sound. I found that my mother, would at times, not respond if I talked to her. But if I snapped my fingers she would come out of it. As if she was somewhere else or was sleeping with her eyes open. At times it seemed like a young child when they sit in front of a television and get so involved with what they are watching they enter a trance like state. My friends father didn't respond to sound like the finger snapping. But wave your hand quickly about a foot in front of his face and he would snap out of it. I would often wonder if they were having an out of body experience.

Eating and drinking will most likely become a problem. Being able to take any kind of pill may be impossible. My mother could eat but she had false teeth and it was a daily game to get her to let me take them out to clean them. When it came time to replace them it usually took several attempts. She just didn't understand. so I would try for a second and if I didn't get them in I would just try again 10 or 15 minute later. No arguing or fussing just accept the fact and try later. No big deal.

Occasionally she would forget how or just not want to chew. That's when I would use a juicer and organic fruits and vegetables. Sometimes she liked it but I couldn't get her to drink from a glass. So I got some of those large plastic eyedropper like things they use to give kids a dose of medicine and I would give her fresh juice.

As long as the person is getting sufficient liquids and nutrition the need for feeding tubes and IV's can be put off. They may sound like a good solution but they come with there own set of problems. Like trading one evil for another. Many times a feeding or drinking problem, like the disease itself occurs in cycles. It is easy to say put the tubes in but if you do there is a much greater chance that regular drinking or eating will not resume.

If or I should say as the parts of the brain that control the proper function of the body are effected things can start to decline. Sight may be effected to the degree of blindness. Any or all of the bodily functions or organs may not work well. Urine may concentrate and become strongly colored and have a strong smell. As these things stop working as well as they should energy levels usually decline. The person may hallucinate and see things that you can not see. They may become unconscious. Breathing may be shallow or a struggle. The lungs may start to sound like there is fluid starting to collect in them. Blood pressure often starts to lower and as it does the heart may try to pump harder. Or heart rate may decline too. Even if they are put on a breathing machine they may be gasping for air. Some people are lucky and just drift away while others seem to struggle to hang on.

If a natural death is taking place the brain sends out chemical messengers that tell the organs to shut down. If the heart stops and electric shock is used to try and restart the heart it is thought these chemicals are neutralized. If this occurs the body can be often kept alive. The automatic functions like the heart beating and breathing may resume. Often a breathing machine will be hooked up and the person may be breathing above the rate the machine is set at.

That does not indicate life. It is most likely the person is not there. Families often keep the body alive for days or even weeks refusing to accept the person has died. Continuing to return to the hospital everyday and stretch out the ordeal. As the person is actually dead with the machines giving the appearance of life. Even when you are prepared for a death it can be hard to accept. Turning the machines off isn't easy. Everyone needs to deal with it in their own way and do what they feel is right. Whoever has to make the decision will remember it for life. I know I've had to do it for a few family members.

Magintob answered...

Advice for those of us who still have the ability to think and choose...NOW is when we need to write a statement to guide those who will be given the responsibility to choose for us in later years. Families feel obliged to prolong life as if that is what must be done above all else.

Not for me. With my family history I probably have 30 more years left but I have already written my living will, spelling out my personal instructions in the event of things like feeding tubes and IV drips for advanced alzheimers.

I would spare my family and care givers of the agony of making that choice. It is the natural and only end to life, to die.

Jorie13 answered...

Went thru their death part time caring for my mother and sister. My sister and mother had hospice at home and it was much better than with my father in a nursing home. The nursing home didn't call us when he was getting ready to go. They said it was a mistake which didn't help us much. They had all indicated what they wanted done for them and this makes it much easier for all the family.

Rellim answered...

I am glad someone asked this question. It has been on my mind alot. Especially since my dad has lost controll of both bladder and bowels. When I think back to how he was when he moved in with me I can see how much he has declined, but like the only daughter I don't see it on a daily basis. At first I felt guilty when he quit walking. As he got worse I thought I must be doing something wrong, luckily I came to realize that it is all part of the disease. The latest thing is he has lost controll of his bowels. I wondered at first if I could handle it, he has had some accidents in the past 2 years but now it is almost daily, at least every time he goes. Yesterday I had atalk with myself, I do that alot, and with God and decided this is just another stage and I will keep on giving till I can't give any more! Once I made that decision I felt better about myself. My Dad needs 24/7 care and I am it! Sometimes I feel overwhelmed and think I can't do this anymore, then I think , no there is a rainbow at the end of this storm too! I am not talking about his death, I am talking about the times when his good humor comes back to him and we have a good laugh together, these times will be cherished and it is a shame my 4 sisters are missing out. But thats their choice, do you hear resentment, well you should, I have lots of it, but keep it well hid! Just wanted to add my thoughts and say thanks to those that responded to coles question. Rellim

Redbeard answered...

My father seems to be in the last stages of Alzheimers and seems to display most of the characteristics listed in the first response, by Joyce Simard. I wake up everyday expecting "the call". I hope that it comes sooner rather than later.

Theloneconsumer answered...

I am a health care provider, and in Florida. Of course, we have the oldest per capita areas of elderly, Pasco is 1 in 3 are over 65. I have watched with horror, the acceleration of death using drugs and with holding drugs (like blood pressure) from family members. Especially since the 401K evaporation of retirement from younger children. But I want to stress the difference between alzheimers and dementia. If I was asked the end stage of alzheimers, I would say inability to remember to swallow, incontinence, but maybe because of hypertension. Kidneys arent functioning, women especially are using more immodium and gas-x to control bowel movements. It ends up destroying good bacteria in their stomach. Alzheimer patients are a little better to manage than Dementia patients. And we will see more dementia symptoms, and here's why. Dementia patients can have very violent swings in behavior. Because, dementia patients remember, then forget. And when they "come back to you" in a lucid moment, they dont understand why their memory is fleeting. If your bruits are blocked, the arteries going to your brain from the heart, you will have memory problems. Believe it or not, smoking can cause dementia! and the "Age of Aquarius" people will be a quick drain on your children's finances, but wont live as long as their healthier parents. Some forms of dementia are reversable. We are 5 years away from a cheaper form of PET and SPECT "nuclear imaging" tests for the brain. The neurologists will know what part of your brain is not functioning, and maybe what type and specific dosage to give you. Read Alzheimer book by Dr's- Daniel Amen and Shankle.

A fellow caregiver answered...

Im concerned about Rellim. Please take good care of yourself ! I focused on the caregiving, forgot myself, and broke my own health. Try contacting your county aging services to see if they offer any help like care giver respite or bathing assistance. Also see if united way can provide helpful info. I found out too late. Please remember that youre important too. God bless you all.

A fellow caregiver answered...

I have 2 in their 90's - mom and her sister - Aunt has advanced Alzheimer's and is slipping daily. Someone asked me once "do you feel you are being punished?" I felt sorry for her lack of sensitivity. NO - I FEEL I WAS CHOSEN. It is TRULY an honor to be here for these two wonderful ladies who were there for me during my life every step of the way. Don't get me wrong - I get frustrated and I cry and have to scream sometimes - then I turn around and feed them and bathe them and change them and tell them I love them every single day. Try to be a problem solver - it will take your focus off yourself and ON THEM where it should be. This is not forever, just for now while THEY NEED YOU. Never forget that if you are a good Caregiver, YOU ARE CHOSEN BY GOD TO BE IN THAT ROLE. I truly believe that. God Bless You all.

I feel your pain answered...

So today...i just wanted to send blessings your way, knowing first hand that this is not an easy task you are called to. Have you found support group to be helpful? I promise to keep you in my prayer as you give your love to others. I pray that your blessings will be many.

Cyndib answered...

I am an only child and live some distance from any family members. My father died 12 years ago, making me the sole caregiver for my mother. She was "officially" diagnosed 3 years ago with dementia, though I suspect she was already in a declining state.

Death is a fact of life to which we are never prepared fully. Fortunately, six years ago I listened to the voice within and had a Power of Attorney for Healthcare written; followed 3 years ago with a living trust including all healthcare documents. My mother was able to have in writing her wishes for her final hours. These two acts have saved me the anguish and heartbreak of making decisions I did not wish to make. (My mother left the decision to me to turn all life support off my father when he was dying, a decision that torments me to this day.)

Recently, my mother was in the hospital for a serious fall. Prior to discharge, the hospitalist informed me my mother had about 6 months left to live; she is in the last stage of dementia, he said. Not fulling believing what I was hearing, I did, however, sign her up for hospice care, even if only temporarily, which has been a comfort to me, probably more so than my mother. Not taking one doctor's opinion, and certainly one whose specialty was not in diseases of the aged, I made an appointment with a gerontologist for a comprehensive evaluation. I am anticipating that appointment and preparing myself for what he may or may not tell me. Whatever he shares with me, I will accept.

To the original question posed, I encourage you to read as much as you can (the internet has been very valuable), make an appointment for your family member with a gerontologist, if possible. Also, you may check with local hospice agencies in your area. They have a wealth of information at their disposal and can be a comfort to you as well. Also, nursing home personnel can answer your questions, especially the social workers. As you are probably the only caregiver to your loved one, be aggressive in your search and questions. I hope you will find answers and in the process, find comfort for yourself.

A fellow caregiver answered...

My Mum has just passed away, she was diagnosed with Alzheimers 4 years ago and 5 years ago diagnosed with Diabetes. Mum slowly got worse over time. In the past month she declined rapidly to the point when she stopped eating. I was spoon feeding her but the last week she hardly had any food. For about 4 weeks before she died she had moments when she struggled to breath and ways always falling asleep. I spent the day with her the day before she died, her oxygen levels had dropped to around 60, nursing staff called the doctor and he expected to live only 2-3 days, as her heart was failing. She passed away the next day surrounded by her family, I believe she knew we were there as she held my hand very tight. I think she was ready to go because she knew we were there. I learnt a lot from my mother in the last 4 years. I was able to come to terms with her condition and help her through it. I do not fear dying as much now

A fellow caregiver answered...

I just want to say that I admire each of you that takes care of their loved ones. My mom has Alzheimers but she is in Germany and I am here in the US, I only get to see her once a year. My dad who will turn 80 years old in a few month his her caregiver and I know that he is only capable of doing what he is because he still loves my mom with all his heart. I am not sure if my mom will still be with us by the time I will make it back to Germany. I feel terrible that I can not be there and help my dad take care of my mom, but I have to go to work everyday I can't just quit my job and leave everything behind. So the ones that are there everyday with their mom's or dad's or their grandparents, even if it gets hard and I know it can, consider yourself lucky that you are able to spend the time that is left with your loved ones. This disease is no joke and it is very hard on everyone involved in it. It is a slow and painful pass for the ones that have Alzheimers and it must be devastating for them to know it and there is nothing they can do about it. It just takes your life away while you are still living.

Sabrina l answered...

My grandmother has had this disease for 14 years. I've watched her forget who we are. But once in a while she would respond to her name with a smile. She was so loving during this time she would talk to strangers tug children. She was extremly loving during the time she was forgetting. Than it came to forgetting to eat and my mom would feed her. Than she forgot how to go to the washroom. We would all help to clean her and bath her. After a while she would become stiff and hard to move and her speech was completely gone. You would get a mmm mmm maybe once a week. Her brain began shutting down. She was only 90 pounds and it took five people to move her. She was so stiff. If the brain doesn't move the muscles, we won't be able to do it. No matter how many people it took. We used to force her to walk. Three of us would walk her around the family room. They say to treat them like a baby even though u know they can't feed them selves or walk themselves help them do hand over hand because once u stop they will totally forgetting. U want to challenge the brain so it won't shut down quick. This is a reason why my grandmother is still here after 14 years. It came to the point where we couldn't bring her to the bathroom anymore. She sat in a wheelchair everyday. She wasn't accepting her food. Her mouth would be closed tight and teeth pressured down. No spoon or fork can et through. And the second she would open her mouth we would make her eat baby for and ensure. That would stay in her mouth for hours and I mean hours till her body remembered to swallow. For 5 months she was living off of ensure and one fork full of baby food a day. She wasn't swallowing anymore. She than had to get a feeding tube or starve. My family chose a feeding tube. She was on it for a year and got many infections. She's now in the hospital with a lung infection and only breaths a bit on her own. This disease is terrible. I wanna bring back the tired days when she was stubborn and sneaky. It's hard to deal with just please have patience and treat them like a baby. Just because they forgot to do something help them force them to continue. I believe they stay longer on earth when they are taken care well. Talk to them everyday even tho they psnt respond.

Angelaterese answered...

My mum has had Alzheimer's for 9 years now, she lives in her own home with live in carers. My father (her husband for 56 years) was dieing last week, in his last hours we managed to get him home. We bought him into the house and my mother who can no longer walk or talk very clearly looked at us and said "we are going to have fun, and then said the word privacy" we were astounded as she really struggles to speak usually and would never be able to say the word privacy let alone string a sentence together. We got mum ready for bed and tucked them up together (they were still in a double bed as we had always refused hospital beds in their home) They held hands as they have always done when they fall asleep, we kissed them goodnight, switched off the light and closed the door. All the family were there in the lounge talking about all the happy times we have had with my wonderful Father. I kept an eye on the video monitor which we have set up in their room to make sure mum is safe. My father peacefully passed away with my mother still chatting to him. She was unaware he had gone. The next day she pointed to his photo which we gave to her, she patted it and started to cry, for a few days she was very quite. Then after a short while she woke up and was back to her happy and smiling self again, when we mention his name to her there is no recognition. For once I am happy my mother has Alzheimer's, she is spared the heartbreak she would have had to go through as they were totally and utterly devoted to one another.

Millermkw answered...

To anonymous that said we are chosen by God to be in the caregiver role, thank you! Your comment has helped me more than anything else I've read or heard. My mother is in the late stages of dementia and it is hard in so many ways.

A fellow caregiver answered...

So many of the responding comments here, I have found helpful, in a very supportive way. My own Mum is in a Nursing Home, a Home which is currently attempting to have me banned from visiting. The reason? Seems my vision of Mum taking placement in a Nursing Home to help "ME" so I could continue to function in life but also continue with daily care when I'm there (save of course for the routines for which I am not qualified, such as hoist transfers), was a naive vision, to say the least. As I have since been informed by the Home "you are just a visitor; you signed your Mum over". Anyway, Mum is in advanced stage of Dementia and whilst they are bit by bit diminishing (through the progression of Mum's disease and through the enforcement of the Home), I visit her daily and provide as much of the natural care and understanding only a family member with such a profound and detailed awareness of who she is and what she likes (physically and especially emotionally speaking) could give. Like a previous poster, I give to her, because she gave so much of herself for me as a Mum. It's my turn now. Thank you to the poster who put this into perspective. "Chosen". Yes, given that I have two siblings who see the whole thing differently than I do and who favour the Nursing Home and are so easily manipulated by it against me, "chosen" as the only one of us who has stood to advocate for Mum and Mum only, is what I think is the appropriate word. People tell me "you should live your life". To me, giving as much of my time to Mum IS my life, for the present at least. Later, I will be able to pick up my life and reclaim some selfishness, for my own benefit. That said, perhaps I'm already being selfish, for every moment with Mum, although often leaving me with a feeling of frustration, helplessness and heartbreak for her but with moments of laughter and smiles in-between, are moments to cherish ....... and because I have made the choice that I have, these will in time be mine, all mine. My siblings miss out on that, the more so because they've taken such a stance against me and err merely in favour of the Home based on its accounts to them, rather than the truth. So yes, it is about caregiving, but simultaneously, we receive in kind, moments that will prove to be irreplaceable.

Thank you also to the earlier poster - John, I think?, for writing so clearly the different things that can occur in the later stages of this sort of condition. I know that everyone is affected in different ways and there will always be nuances that have no exactness to another, but the generality with which you wrote does offer an idea of the picture of what to potentially expect.

My apologies - I'm here because I was actually surfing the net for an answer/idea for another problem relating to my Mum's health, and this site came up. But I have taken the original post off-topic and that was not my intention. It was just nice to have a chance to share a little. Thank you for the opportunity.

Wht1knight answered...

In the movie, "Zorba The Greek", Anthony Quinn's character says, "They say that age kills the fire inside of a man, that he hears Death coming, he opens the door and says, “Come in, give me rest!” That is a pack of goddam lies. I have enough fire in me to devour the world, so I fight!”

I believe this statement, and believe that exercise is the best way to fight the ravages of the disease. The problem is the agencies like CMS, do not and so not only do they not cover this, they make it very difficult to find people for private pay to assist with exercise. Based on the experiences of the staff and caregivers where my loved on is, the end is near when the afflicted stop eating; having forgotten how to swallow. Not walking is level of baseline that takes you closer to the end stages.

So what is the point? The point is that the best battle for Alzheimer's is to not get it, and they to reduce that risk is to start early in life with good diet, proper hydration, exercise, good sleep, Those diagnosed with Alzheimer's need stimulation, both mental and physical. documenting capabilities against functions that are failing is a good planning tool, but exercise is the key. Once the afflicted gets used to the wheel chair and sitting all day, the patient is susceptible to other ailments that degrade the body and mind.

A fellow caregiver answered...

Dear Fellow Care Giver I have just had the exact experience in Mums previous care home. As long as me and my family were not getting on; the home exploited it. I always visited Mum and they hardly did. My brother finally realised they were lying; when Mum was hospitalised with a neglect related condition. We both cleared her room at the home together and it was one of the best days of my life.shes now in a nice home and me and brother are a united front. I hope a miracle happens for you as well .God bless you I know how lonely it is in your shoes.