It’s a question we’d rather not think about. What are the final stages of dementia?
But, if you have a loved one with dementia, the harsh reality is that the end will come sooner or later. Because, at least for now, there is no cure for dementia. It is a fatal condition.
In this article, we take a look at end stage dementia – the signs, how to best care for your loved one, where to get help and potentially controversial advice from a nurse about the end of life.
What Are the Final Stages of Dementia?
The life expectancy of someone with dementia varies widely. However it averages around 10 years.
Similarly, how long end stage dementia lasts varies widely. It can last a few weeks or a few years. There is no “normal” here on exactly what you can expect.
However, there are some clear signs/symptoms associated with end stage dementia. Some of the common ones include:
- Incontinence
- Inability to recognize friends or family
- Help is needed with many, if not all, daily activities
- Severe difficulty with speaking or being understood
- Increased vulnerability to infections
- Inability to move around independently
- Trouble eating and swallowing
- Increasingly confused, anxious and combative
In the final weeks of end stage dementia, it’s common for caregivers to report there was a rapid decline accompanied by little to no appetite and weight loss.
Caregiving For End Stage Dementia
Someone with end stage dementia requires 24/7 assistance. They are dependent on others for pretty much all their personal care. And very often they are also confined to bed.
As a caregiver, the focus becomes on helping your loved one preserving their quality of life. While they may be unable to communicate at this stage, there is evidence that shows you can still connect with your loved one.
The recommended way to do that is through the senses – touch, taste, smell, sight and sound. Some things you can try include:
- Looking at old photos with your loved one
- Brushing their hair
- Listening to some of their favorite music
- Reading part of their favorite books
- Cooking a favorite food
- Spraying a favorite perfume or scent around their room
Getting Help & Hospice
If there are two things to keep in mind at this stage above all else it’s this…
- Know you are not alone – you don’t (and shouldn’t) have to handle this alone
- Get help sooner, rather than later
Maria Shriver had a parent with Alzheimer’s and said that her biggest regret is that she “didn’t act sooner because of all the denial.”
There are no shortage of options you can turn to for help… in-home care, assisted living, dedicated memory care facilities.
And, in the final stages, no matter where your loved one is, it’s highly recommended that you bring in hospice.
Hospice will help keep the patient comfortable and pain-free. With end stage dementia, they’ll also work to keep the patient calm and mitigate the agitation that often occurs at this stage.
Hospice workers will also help the family by providing emotional, bereavement and other end-of-life support.
The National Hospice and Palliative Care Organization has a tool to help you find a hospice in your area. You can use the “Find a Hospice” tool here.
“There Are Things Worse Than Death”
One last thing to leave you with here. And it may not be popular opinion. Or easy to hear. But something to consider.
It comes from a post on a message board from a nurse who has dealt with a number of end-of-life situations in her career. Here’s what she had to say in a thread where a number of people were discussing end-of-life situations for their loved ones with dementia (and those who had gone through it with their loved ones whole-heartedly agreed with her)…
“There are a lot of things worse than death, folks! To me, living with dementia in a nursing home is one of them. I have told my family that they are to stop all medications except for comfort when/if I get to that point. I will not prolong my mom’s life once she has gotten to that stage. No medicine except for comfort. No feeding tubes. Hospice care only. It is hard to say goodbye to a parent but by the time their AD has progressed that far, you have already had to say goodbye. I’m not trying to make anyone upset but am giving you another option. There is nothing wrong with letting go, letting God. Modern medicine can keep people alive a lot longer than they should. Something to think about.”
Definitely something to at least think about.
More About the Stages of Dementia
This is part of our series of articles about the 7 stages of dementia. Want to know more about the other stages of dementia? Read this article “What are the 7 Stages of Dementia?”
I totally agree with your opinion. I am in my 10th
Yr of taking care of my aunt. She was diagnosed with dementia when I had to step in as she allowed complete strangers to take care of her as I was taking care of my mom with her health issues when we found out that this was going on. They had taken over everything. I had to hire a attorney and go to court to get legal guardianship. I can see her
Having signs of the end of her life. She is 91 and has never taken any medicine. I will keep her at her house as this is where she belongs. When her doctor tells me it’s time for hospice I will have them come in. Thank you for this article. God bless you!
Thank you for leaving the nurse’s comment. Very impactful. My mother is already on hospice, is over 80 with COPD, but it is the Alzheimer’s that will kill her. Her biggest fear, because she watched her mom (my biological grandmother) die of it. Although hers was very rapid whereas my mom’s is not.
At least now, I have another option.
Thank you
I have been taking care of my grandmother for the past 5 years but she came down with vascular dementia when my daughter was one. That was almost 11 years ago. I did everything with her so that she still had happiness. We have laughed we have cried we have been mad we have been happy we have done everything and I don’t want her to suffer. When the good Lord takes her I will be broken… But I will also be so happy for her. My grandmother who I know as my mom has given me her all. I myself have given my all. She will not go on feeding tubes and she will not take medication because she doesn’t want to really be here. Most people ask me how I know that and if you knew my grandmother AKA mom she would never want to be trapped in that body. I have watched her slip away from me day after day after day… Every day it breaks my heart but she knows that I love her and I always will. And as for there’s worse things than death that is so very true. Alzheimers and dementia is one of the most horrible diseases. That disease is also very kind in a way 2 the person.. it is harder for us as loved ones to watch them slip away. I just pray that anyone who has a loved one that has Alzheimer’s and Dementia find peace 2 help with your sorrow and heartbreak because it’s not easy to see them no longer be what they were. Always remember what your loved one was and always be patient because getting angry won’t help. God bless you all.
What a great message and great advice. We appreciate you sharing it with us Jessica.
I stepped in to help my x brother-in-law through the last 5 years of dementia/Alzheimer’s. He and my sister had divorced and he did not have a lot of family in this country except a son with Parkinsons disease and one that would not accept any responsibility to help his father. It is very challenging to watch this disease rob people of their life. Last week I was faced with the same decision to insert feeding tubes. I elected to not do this. This was the most difficult decision of my life. I had watched him detoriate the last 6 months being in and out of the hospital. My brother in law just passed a few days ago. Thank you so much for the article. As humans we always ask if we made the right decision and your article helped to ease my sadness and pain and guilt around the decision. I was able to be with him in his last hours on this earth and am thankful that he was not alone. Thank you again for sharing this.
As I read this I sit next to my loving mother in her end stages of Alzheimer’s disease, it truly is a fate worse than death. My mom is now on hospice & on pain medication along with adivan to keep her calm ‘& comfortable. I don’t want her in pain I want her to be calm & pain free as I can make her. She stares at me i just tell her I love her & what a wonderful mother she is & that I am here by her side . I will be here till her final breath . I want to hold her as she goes so she can feel my love as she crosses over to our lord in heaven. Thank you my precious mommy for being my rock thru my life & I will be urs as I have been the past ten years since this horrible disease took u from me till u take ur last breath… I love u always & forever.
Thank you all for sharing. I too have dementia and I am totally scared of what I will become (just a shell of a person) a burden to my only son. I have been terminated from my job as properly manager at Mercy Housing on 10.13.18 after 8 years working there. I’m totally lost as to what I need to do to lighten the burden to my son. I am his only family so he will be overwhelmed to have me to care for knowing I will not recover. He is also caring for his 6yr old daughter. I’m so overwhelmed by all of this. I can only imagine how he will have to deal with all this as he will be completely alone wit no one to turn to.
Sorry to hear about your situation Sherry. If you haven’t already, please reach out the your local chapter of the Alzheimer’s Association. They should have some great resources to help you and your son.
i have been helping my husbands grandma for almost two years. When i started she was 93 and shatp as a tack. But sadly the stress associated with the realaties of what her former caregiver had done was to much on her and how it related to her son. Soon she developed afib and then the realization of congestive heart failure knocked its eary head at the door. Soon i would start to see the common signs of Dementia; forgetfulness, fearing someone had taken a misplaced item we would later find and then during times of a uti she would become combative. Ill be honest i feel like im now in the fire and she is struggling with looking for those who have since gone, or asking for them. Sadly, she only seeks the comfort of those who have since passed and rarely wants to see any of the other family. Due to some money missings she dont ask for her son. But i need help in keeping her calm and feeling safe. Since the event where her money was taken i think she struggles feeling secure. Is there anyone out there that can give me some advice. I try to focus on positive encouragement, affirmations and lastly distraction when she becomes agitated. Thanks in advance. I love her dearly
God bless you Sherry!?? For you and your son.