Dementia- When Does The Dying Process Begin?

Dear Barbara, what do you think about a patient who has been in hospice for months. He has dementia. I thought when patient’s got on hospice they would die soon yet I hear there are patients here in this nursing facility that have been here a year or more. I heard a saying, “dementia patients forget to die”. Is that true?

I'm glad you reached out to me about dementia at end of life. I'll start by saying I have a booklet How Do I Know You?, which goes into detail about how dementia at the end of life is different from other diseases. You may find it helpful. 

I have not heard the statement "dementia patients forget to die" and I do not agree with it. They die, it's just that it generally takes them a lot longer. 

They don't however play by the "rules” of how the body generally dies from a disease (withdrawal, sleeping more, eating less). With dementia as the main diagnosis, they don’t really enter the actively dying process until eating is problematic (choking, holding food in their mouth, not swallowing).

About being on hospice longer than expected: in my opinion you cannot determine if a person with dementia has entered the dying process until the difficulty with eating signs occurs. YET more and more hospices are admitting patients way before that happens. Hospices are filling a need that is otherwise missing in our health care system —support, care, and guidance during the very long deteriorating disease process.

The problem with hospice stepping in to help with dementia patients is when the admission occurs before the actual dying process begins. The patient doesn't die in a timely manner and is then discharged from service. The hospice makes money, the family is supported for a while, but then the family is back where they started in relation to lack of support and care. 

There is a reason dementia is referred to as the "long goodbye;" the mind is gone long before the body.

There is a time to accept patients with dementia. There are signals that say the dying process has begun.  BUT having said all of the above, there are people that don't play by the "rules," that die when it appears they won’t. 

Something More... about Dementia- When Does The Dying Process Begin? 

If you are caring for a special person at home who has late stage dementia, you may find support with my new guidebook, By Your Side, A Guide for Caring for the Dying at Home.

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I just received “Gone From My Sight” today while meeting w/my dad’s new Hospice nurse for the first & signing all the paperwork. I’m overwhelmed & not wanting to lose my 88-yr-old father, though I know it is reality, especially at his age.
I want to thank you for teaching us all that you know & learned from your own experiences. This is truly something that rarely gets talked about until the very last minute. Or it may never get talked about. I’m very grateful that I was given this pamphlet & I am ordering a few other ones that I see you have written, including the one re: dementia. I assume that will be good for me to read, although my dad’s dementia was caused by his first stroke 2 months ago? They considered him as having dementia.
Thank you again & God Bless you for your help & knowledge.
BK Books replied:
Hi Kathy, I am glad to hear you were given Gone From My Sight and that you have ordered some of the other booklets. It helps to know what to expect during this challenging time. The booklets take away some of the fear of what is unfolding. Blessings to you and your father. Barbara

Kathleen B Hrycuna

Kathy Oct 13, 2022
My husband is in end stage Lewy Body Dementia.
He goes back and forth on eating , sometimes choking , sometimes refusing or sleeping through-all over months back and forth.
He is losing more weight now and getting more restless and agitated at times, but I find it hard to
process the process.
I do have the booklet How Do I Know You?
I guess it’s just going to get more frequent in the above activities ?

BK Books replied:
Hi Kathy, It seems like we can deal with just about anything if we know what to expect. Knowledge gives us an opportunity to ready ourselves. I’m sorry to say with dementia there is really no game plan to follow. It is such an unpredictable disease. Again, it is food and eating ability that is your gauge. Once eating has stopped watch for “labor” to begin, then they begin following the “rules”. Blessings to you and your husband. Barbara


My wife’s mother is in a nursing home with dementia. Her short-term memory is bad, actually very bad. She still knows everyone and her memory of years past is great, probably better than mine. I read the part where you wrote “when does the dying process begin” and I was hoping you could go into more detail about that. I appreciate any help you might provide any I appreciate your time.
BK Books replied:
Hi Ray, the dying process for someone with dementia and no other life threatening illness begins when eating becomes an issue (choking, not swallowing the food, refusing food). If we don’t eat enough calories for maintenance the body will die. You might find my booklet How Do I Know You? Dementia at End of *Life *helpful. Blessings! Barbara

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