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?”