What are the Stages of Alzheimer’s Disease? Symptoms of Late-to-End-Stage Alzheimer’s Disease

I’ve taken care of thousands of older adults living with Alzheimer’s disease and ultimately dying either with or from this devastating disease. I hope the information in this podcast will help you to be prepared as your loved one moves through each stage of the disease.

There is some variation in what different people think are the Stages of Dementia. I am of the mindset (pun totally intended) to keep things simple – so I think of this disease in 4 stages: Early-, Middle-, Late- and End-Stage; or Mild, Moderate, Severe and ultimately the dying process.

Late-stage Alzheimer’s – or Severe

At this stage, the person is going to have severe symptoms and rely on others for all care. They lose the ability to carry on a conversation, respond to their environment, and eventually lose the ability to control movement.

Common symptoms or difficulties in this stage include:

✔️ Difficulty communicating with words; which leaves their behavior to tell us what they might need.
✔️ Requiring around-the-clock assistance
✔️ Lose the ability to walk, sit and eventually they will have a hard time swallowing. In fact, nearly 80% of people in late-stage dementia will develop some form of an eating problem.
✔️ And because of the swallowing problems, they are at a higher risk for aspiration or bladder infections

In the late-stage of this disease, the person will likely have trouble initiating engagement with you or their loved ones, but they still benefit from interacting in ways like listening to music together, singing, or receiving assurance through gentle touch. This is the time for caregivers to explore community services and supports like palliative and/or hospice care.

If/when the time comes and your loved one is having trouble swallowing, I recommend working with a Speech Therapist to determine the best type of diet. This may range from mechanical soft foods to pureed and some level of thickened liquids to minimize the risk of aspiration. You should also seek the support of a local palliative care provider to help guide you through the end-of-life that is inevitable with this disease.

No one has ever survived Alzheimer’s disease. That means it is terminal illness – and you will either die with Alzheimer’s disease - or from it. It is a highly emotional time for loved ones, but when you die from Alzheimer’s disease, your loved one will not starve to death – they will die from Alzheimer’s disease. Think about how nature handles death. Many forms of life stop eating and drinking when death is near, and this is not a painful process.

Feeding tubes are not recommended in Alzheimer’s disease because it is a terminal disease. Evidence has shown that feeding tubes don’t do the things that most families wish they would: They do not decrease a person’s risk for aspiration or infection; they don’t improve quality of life, in fact, they are often pulled out which results in a trip to the emergency room or being hospitalized. It’s not natural to have a tube hanging out of your body and when your brain has failed, you don’t understand what it’s doing there and it’s natural to try to pull it out.

If you find yourself in the situation of having to make a decision about a feeding tube, I’d like for you to learn more about handfeeding. Handfeeding is recommended over tube feeding until death.

Offering supportive handfeeding using three different handfeeding techniques allows you to connect with your loved one - and offer food and fluids in the safest way. You can learn more about the handfeeding techniques by checking out my video titled “How to Help a Person with Dementia to Eat”.

End-Stage Alzheimer’s Disease – The Dying Process

At a certain point, your loved one will enter the dying process. In this final phase of life, you will want to have a palliative care or hospice provider guiding the care of your loved one.

Here are criteria that are generally used to mark End-stage Alzheimer’s disease. At this point, your providers should be asked if they would be surprised if your loved one passed away in the next six months. A life expectancy of six months or less, along with these other key symptoms typically mean the person has transitioned to dying.

✔️ They are bedridden, meaning they are no longer able to walk or sit upright
✔️ Total loss of control of both their bowels and bladder
✔️ Difficulty swallowing or choking on food or fluid
✔️ Weight loss or dehydration due to the challenges of swallowing when eating/ drinking
✔️ Not able to speak more than six words per day
✔️ Another chronic condition such as congestive heart failure, cancer or COPD.
✔️ An increase in trips to the emergency room or hospitalizations
✔️ A diagnosis of pneumonia or sepsis

Alzheimer’s disease is one that makes us all take one day at the time and live in the present. It can be a very long process, so I hope this information and recommendations for finding support have been helpful.

[dougcropper]

I appreciate your comment "no one has survived Alzheimer's"
My wife is in late stage (not the dying stage) & she is only 60 years old. Things keep changing almost every month. She is not independent at all.
Alzheimer's is a terrible, relentless disease

[umslkju]

To be able to help with hospice care, is an honor and a privilege.

Always

[kathrynemason]

My mother has mental health issues, always has, and the dementia has left us with the worst facets of her personality. All the things she kept a lid on in public and a little at home, are now on full display as the social barriers we all put in place have disappeared. There is nothing nice about caring for her. I've looked after people with various dementias for years, fortunately, so have a perspective on what is happening and how things are progressing. She would be a horribly disruptive influence in a care facility but requires 24 hr care, so my husband and I have moved in to her house for the duration. It's often soul destroying but I know she is as well as she can be, always clean and well hydrated. That's all we can do. Sending love to anyone caring for a relative.

[JCourtsk]

Thank you for your video, my 72-year-old dad he’s going through this, and I believe he’s in the late stages, it’s so heartbreaking

[cort]

. My 82-year-old mother is exhibiting most, if not all of the near-to-late-to-end stages that you listed. Thank you, Dr. for not only giving me much-needed information, but also peace of mind.

[bq]

My sister is 62 years old with late stage Alzheimer's. Diagnosed 5 years ago at stage 4. Probably stage 6 now. Plus she has epilepsy. Her vocabulary has shrunk and her appetite too, she's lost a lot of weight in a year . I'm her 24-7 carer at her home and completely exhausted. Last November I started bringing in carers/sitters for 2 hr sessions. My mother had Alzheimer's too and I fear I will get it . I wish someone could tell me how much longer she will suffer.😢

[suzankephart]

My mother is 91, she was diagnosed with dementia about 8 years ago. I think she had signs slowly show about 1 year before. A couple years later my Dad got in a car wreck with my Mom.
She had some broken ribs. While running test they found she had lymphoma. The doctors convinced my Dad to put her on Chemo. She took 3 treatments and nearly died. She was in the nursing home for rehab after that. My Dad was also in the nursing home in rehab for pneumonia at the same time..
At this time my Mom was already in diapers, she had no control of herself.
If she tried to talk, she would stumble and sputter her words. She talked about her Mom and Dad like she was back in those days. She didn't know our names. She called my daughter that girl. She called my Dad that guy. It was funny she was sitting in her recliner one day, and she asked my Dad if he had a wife. He told her yeah i got a wife and my Mom said well, where is she?
My daughter started helping my Dad because he had major heart issues, Dad died March 12, 2021. Just short of his 95 birthday. Mom never noticed he was gone.
My daughter moved in with my Mom as her full time caretaker.
My Mom is also a diabetic, she has arthritis.
My daughter has given all her attention to Mom. It has not been easy. One day Mom was giving her a hard time, sometimes she gets pretty bad. My daughter got really stern with her. She told her if she didn't behave she was going to tickle her feet.
Mom yelled you better not. She grabbed her foot and i never heard my Mom laugh so loud. That was all it took, her mood changed and she was just as sweet. We have some good memories. My daughter's granddaughter is there a
lot, she plays with Mom. Sometimes when i come over she is sitting on the arm of Mom's recliner and they are telling secrets and talking. She has grandma, great grandma and great great grandma there with her. Lucky little girl.
Through all of this time Mom has had UTI, which has caused a problem. She has been on antibiotics for about 3 years. When that infection starts to get bad we know it because her dementia is off the chart. And the sugar goes up rapldly. She would chew on blankets, talk to the walls, even stay up 2 days straight. Unbelievable!
She would never complain about pain, if you asked she would always say she was fine. She ended up going to the hospital and she was septic. She pulled through it. Yet, Mom had a rash that my daughter had been worried about and that rash turned out to be shingles. Right on one side of the diaper area. Up one side of her back.
So Mom went back to rehab in the nursing home in quarantine.
Through all of this Mom has always gotten up on her walker with help to go to the bathroom, to eat at the dinner table, she eats and drinks by herself. Now when she eats and drinks you have to keep reminding her or she will just wonder off and just sit there.
Mom has been on and off of hospice 3 times. We just got her back on a couple of months ago.
Now my daughter has been telling the hospice nurse that she thinks that infection is still there.
This last month she has went downhill.
Everytime i come to my Mom's in the morning she would be at the breakfast table. I would walk over and lightly place my hand on her back and she would slowly turn her head. I would give her my biggest smile and say Good Morning and her face would just light up. It was heartbreaking this morning she couldn't say Good Morning or even smile.
The day before my daughter had to call an ambulance for her, her sugar was 378
Well, the hospice lady came to the hospital and said that she was just end of time and she had been crying for days. Which she had not been crying for days. Her report said nothing about her diabetes.
Just that she was end of time.The hospital had put her on an IV of fluids and intervenous antibiotics because she did have another infection. Yet, the hospital did not admit her after the hospice turned in their report, did not stabilize her sugar. Hospice made no mention on their report that she was diabetic. I don't understand, the ambulance had been called for a critically high sugar level.
The last time she got sick like that the hospice lady that came to the hospital told my brother Mom would be dead in 2 weeks.
That was a year and a half ago.
My daughter and i were pretty upset. And the hospice asked my daughter what do you want extensive care? That did not go over well with me. I found it insulting. After all these years of struggling with Mom we know there is no cure, that she can't be fixed. She is getting close.
But why let her get septic?
The hospice nurse that came to the house a couple of weeks ago told my daughter there was no use in doing blood work or urine test because by the time the results came back it would be too late.
Am i wrong? We just want Mom to be comfortable. Should we just put Mom in bed and give her morphine. That is pretty much what they suggest. Are we prolonging things? Are we stretching out her sickness.
Do we not think God will take her when it's
her time?
Very hard!

[kevinnasky]

Thank you. There’s a dearth of info about the late stages of dementia.

[katherinewillis]

I keep hearing about difficulty swallowing in late stage Alzheimer’s, my grandmother live until she was 93 with Alzheimer’s, she never had a problem swallowing, her brother had Alzheimer’s also, he never had difficulty swallowing. My mother is stage 6, but declining I think she is close to stage 7 but she does not have any issues with swallowing.

[danbarosh]

Thank you Doc It was a great presentation...You were right on target from the get go...Wife 77y was diag with alz a little over year ago...Definitely in last stage..Been a good eater all along until last few days Cant seem to swallow anything but liquid and not doin well with that...We scrambling tryin to get pills in her..anyway your presentation was WOW and as pleasant and understandable to even a country boy..THANK YOU

[qxrwflt]

THANK YOU, Dr. Melissa, for sharing your expertise, your wisdom, and your Love. Of course you can acertain, we are doing with a family member with Dementia. Your kind advisement, is helping us alot. God Bless You.

[ai-ymgw]

Thank you for this video. My dad is 78 years old and is going through late stage I think. A caregiver is with him 24hrs.

[lesiahmaduna]

I'm very happy for this information my aunt has got it l thankyou

[pairofdot]

To think that one day my family could forget who I am. It’s such a horrifying thought.

[pamabbey]

Just thanks for everything. You are so calm. I appreciate that. It helps so much for me to understand what happened. Both my late husband with LBD and my role, as a caregiver

[ddutton]

Do you have an opinion on the value of the Bredesen methods for MCI? Another great video. Regards

[hinmin]

My father in law, 93 with dementia, sits with water in his mouth. We have to remind him to swallow it. He eats a rice and lentils porridge kind of dish (khichri) mashed eggs and oatmeal. He is fainting regularly with plunging blood pressure. He is totally dependent on others for toilet needs. He gets severe constipation every week. But he can still walk with a walker stiffly. What stage would you call this?
My mother, 91, died with dementia 4 months ago. She got pneumonia.

[JenniferFordEsq]

Thank you for easy to understand explanations. How do you feel about the study about 40 Hz sound and flickering lights from Emory University? And, also the one ongoing in Salt Lake City? It seems to show just light and sound- without medication- decreased the plaque and improved symptoms.

[eidetic-mopl]

How do you help the person when they are screaming (just about anything) at the top of their lungs for long periods of time? It's very sad, and I'd like to help the caregiver cope and help her calm down. It appears she's in the end stage of dementia. ( I'm a friend of the caregiver.)

[amandaallen]

My Grammy (mom's mom) has been diagnosed with mild approaching moderate Alzheimer's as of a month ago...we just took her driving privileges away a week ago