Jun 15, 2021
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.