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nursing home entryand or death prediction tool
Posted: Thursday, April 9, 2015 7:16 AM
Joined: 9/12/2013
Posts: 3608

This link is to a calculator to predict how many years until you will need nursing home care and/or die. Got if from Columbia Science site.

(I edited this post as it did not make sense. Hope this does.)

I have about 5 years left. I suppose any thing that claims to give you a timeline of when the money will run out could be useful. It is a guestimate.

Of course not every one ends up in a nursing home and people die of other causes while living out the path of Alz. So out of the probable 5 years left I figure 2 years to still horse around a bit. Considering a bucket list, could not find any vacation or thing I have not done before - but I do still get excited about earning a living! I loved to work and get paid. I am going to try to make some money again. I say that today.

I found the link to the calculator on caregiver board, under a heart wrenching post about how bad it was taking care of somebody with dementia and being at end of their rope. After that was this link and I imagined hundreds of people going there and figuring out how much longer they had to deal with their personal burden. Whoa! It gets so real.

Hot footed it out of there.

Iris L.
Posted: Thursday, April 9, 2015 12:00 PM
Joined: 12/15/2011
Posts: 18508

Alz+, you know that we must take everything we read about Alzheimer's disease and dementia with a grain of salt. This is because what we call Alzheimer's disease is not one disease, but a compilation of many diseases that are as of now, poorly differentiated.

Most patients have absolutely no treatment and are under quite a great deal of life stress before they are recognized as having a disease, as opposed to being just an obstinate old person.

I can read these studies but I don't become emotionally attached to them. When I first met a geriatric care manager in 2009 and told her I was concerned that I might have Alzheimer's disease, she whispered to me that patients have 7 years to live. What a thing to say to a person! That was 6 years ago. According to her, I have 1 more year left. Well, I don't think so!

This study was published in 1997, 18 years ago. The care of patients with dementia has changed over that time. I believe we should be mindful of the prognosis of the dementias, but not terrified or discouraged by the prognosis. What can we do personally and individually to deal with the prognosis?

Everyone of us will die. Studies of people with terminal illness, such as late stage cancer, have shown that people are not afraid of death, but are afraid of the dying process. We can have some input into this dying process. This is something we can think about and not be afraid.

From the study:

How accurate are these predictions?

This is the first time that a technique to make these predictions for individual patients has been developed. We did try out the approach on it to a different population from the one it was developed with, and it worked quite well. Still, we see it only as a first, promising step and hope to do more work to increase our confidence in its accuracy. At the least, this approach can differentiate patients with better and worse prognoses to a degree that is not presently possible.

As we know, Mimi always talks about why some of us have different prognoses. This study seems to try to differentiate patients with different prognoses. But what have they accomplished over the past 18 years? Who knows?

I have personally spoken with researchers who presented at Alzheimer's conferences about my own case. Not one seemed interested, because I don't fit the criteria of the "average" Alzheimer's patient. After that, I lost interest in a lot of what they have to say.

Alz+, I was impressed by what you posted on another thread about how families can relate to the patients, and how patients continue to recognize love and caring. This is a new concept that I have not read before in the 6 years I have been reading this board. How many patients are constantly stressed by prodding and mental stress from the people around them, both families and professionals?

I have personally been highly stressed by my closest friends and my professionals. My life has been a lot easier since these people are now out of my life. They did not learn to treat me better, unfortunately. They either abandoned me or I chose to avoid them, in the case of the professionals.

I am choosing to handle my illness on my own terms, as much as possible.

Iris L.

Agent 99
Posted: Thursday, April 9, 2015 2:23 PM
Joined: 6/7/2013
Posts: 2166

I posted that link and debated whether to mention the prediction paragraph. I decided to mention it because it was on the page above the info about the various dementias that I thought would be of interest to caregivers. I wish I never saw it but I didn't want someone to get to the page and see it without warning - that's why it wasn't in the post title. Perhaps I could have worded it differently but like I said, I wish it wasn't there.

I'm going to delete the post and figure out another way to get to the discussion about the dementias.

My sincere apologies.

Posted: Thursday, April 9, 2015 2:59 PM
Joined: 11/27/2014
Posts: 88

How depressing
Jo C.
Posted: Thursday, April 9, 2015 11:05 PM
Joined: 12/9/2011
Posts: 13593

After reading it, my personal editorial comment about its reliability and worthiness is just this . . . .