4 ms·

The meta-problem is that early identification only matters if we have an effective therapy which can seriously slow or halt disease progression. we do not.

brain5ide 6y ago
It matters for digging into that, doesn't it?
toomuchtodo 6y ago
Early identification allows you to better plan what the remainder of your life looks like for you and your loved ones, even if a protocol is not available. As someone who has had to coordinate end of life care more than I’d like to have had to, this is invaluable.
- wdb 6y ago
  Based on the experience of my uncles, and my dad, grandma have had it. I am not sure that I want to know early that I am might have Alzheimer's years in advance. Personally, I think Alzheimer's is a horrible illness and worse than cancer.
  - scottLobster 6y ago
    To each their own, based on my experiences being a part-time caretaker for my mom for 10 years as she slowly lost her mind and various organs to cancer/cancer treatments (narcotic painkillers and crazy liver enzymes from dying liver), I'd like to know I have a degenerative disease as soon as possible so as to make preparations to minimize the financial and psychological impact on my family. You try every available treatment, maybe hold out for some experimental treatment, but there may come a time where you've tried everything there is and you're just dragging people you love down with no hope of recovery, and exchange all productivity/ability for meaningless pain and torture with no end in sight. At that point I'd like enough saved up to make one last visit to Hawaii, among a few other potential states.
  - WrtCdEvrydy 6y ago
    Cancer just kills you, Alzheimer's kills everyone around you as they realize all the memories they had with you are gone.
  - treeman79 6y ago
    It’s a crushing feeling. At one point my kids walked in the door and I was confused as to who they were. Thankfully it was something else, and was cured. But it was a couple years of despair.
    - onemoresoop 6y ago
      Glad it didnt take you, must have an great relief when the blood thinners cleared your mind. I have some alzheimer in my family and am horified at the idea of dragging my family through it if I get it. Im still young, in my 40s and i have some time left, but only when I hear Alzheimer it makes my skin crawl. My grandmother was the last one to be affeced by it.
- treeman79 6y ago
  Was in severe mental decline for a few years. Doctors had no clue. Was put on alzheimer meds. They did help, but not nearly enough. I Went on blood thinners. All cognitive problems resolved in a couple of days. Turned out it was a clotting disorder. Two actually. Neurological symptoms were resolved by a hematologist. Turned out the alzheimer med was acting as a mild blood thinner for cerebral fluid. So it was the right idea. I imagine lots of alzheimer patients are on blood thinners, so unrelated. But outside the box thinking is still vital.
  - jjgreen 6y ago
    Really nice to hear a good news story in these desperate times, welcome back. :-)
  - copperx 6y ago
    Do you know the name of the blood clotting disorder you have?
    - treeman79 6y ago
      Factor 5 leiden. and Sjogrens.
      - toomuchtodo 6y ago
        Would you mind sharing which blood thinners? My partner has one of the conditions you mentioned and we’ve had a heck of a time trying to get care for it.
        treeman79 6y ago
        I was on elequis , then xarelto. But I couldn’t tolerate the side effects. On pradaxa now. It does the job. Hard on stomach. Was a nightmare getting hematologist to switch meds. A few missed doses and symptoms start coming back. Vision problems, then ability to talk write and think. Then one side starts going numb.
ghransa 6y ago
For the individual yes it would still be bad news and folks likely won't want to get the screening. For the potential development of a therapy, identifying it early would let you have a pool of candidates to be tested.
- graeme 6y ago
  This may change if early screening leads to interventions that can slow the progression.
sandworm101 6y ago
There are plenty of diseases we can detect but not, yet, treat. There are other uses for such knowledge. The diagnoses person can adapt their lifestyle to accommodate the inevitable disease progression. That directly aids the individual. And knowledge of the person's inevitable decline can be used by the rest of society. Children can make necessary arrangements. Safety measures can be put in place, preventing unnecessary injury to the individual and others. If someone has been diagnosed with an inevitable rapid onset of Alzheimer's, they probably shouldn't retire to a cabin atop a mountain accessible only by helicopter.
FL33TW00D 6y ago
I work in this field and whilst it's true that there is no direct medications that can seriously slow or halt the progression, there are effective avenues for slowing it via diet, exercise, reduction of stress factors: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5546647/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5546647/ Early identification absolutely matters, the question is HOW early. 5 years doesn't do much, 15 years? You can change your entire lifestyle and the changes can take effect with that much time.
- nikkwong 6y ago
  I believe that my mother may be suffering from the early stages of Alzheimer's disease. It seems to have plagued all of the women in her ancestral family lineage, and she is therefore well aware that she will likely inherit it. Because of this she has tried to be as healthy as possible her entire life in terms of diet and exercise; albeit, she's now at the age where these issues may start to surface. Is there any benefit for someone like her to get tested?
- JamesBarney 6y ago
  That article does not look promising. Its a laundry list of "Found association, tried RCT, RCT showed little to no effect", "Found association, currently trying RCT", and "Found association"
melling 6y ago
No, it does help. They cover that in the article “Early diagnosis is important because it could offer more opportunities to treat the disease. Dr Rosa Sancho, head of research at Alzheimer's Research UK, explained that previous clinical trials of drugs had failed because the patients enrolled in them were too far advanced in their illness, and by that time it was "too late".
- RhysU 6y ago
  Early diagnosis will help those who come after by providing more opportunities for research. It is likely too late for any presently afflicted person. Personally, I would not want to know.
DoofusOfDeath 6y ago
If nothing else, I'd think that having a good test for early diagnosis would help future cure research, for a few reasons: - Whatever specific thing is being tested becomes a candidate for future interventions. - It could give researchers a tighter pool of candidates for longitudinal studies. - As others have mentioned: any treatments that require early intervention have a better chance of working. (Similar to cancer, I imagine.)

brain5ide 6y ago

It matters for digging into that, doesn't it?

toomuchtodo 6y ago

Early identification allows you to better plan what the remainder of your life looks like for you and your loved ones, even if a protocol is not available. As someone who has had to coordinate end of life care more than I’d like to have had to, this is invaluable.

wdb 6y ago
Based on the experience of my uncles, and my dad, grandma have had it. I am not sure that I want to know early that I am might have Alzheimer's years in advance. Personally, I think Alzheimer's is a horrible illness and worse than cancer.
- scottLobster 6y ago
  To each their own, based on my experiences being a part-time caretaker for my mom for 10 years as she slowly lost her mind and various organs to cancer/cancer treatments (narcotic painkillers and crazy liver enzymes from dying liver), I'd like to know I have a degenerative disease as soon as possible so as to make preparations to minimize the financial and psychological impact on my family. You try every available treatment, maybe hold out for some experimental treatment, but there may come a time where you've tried everything there is and you're just dragging people you love down with no hope of recovery, and exchange all productivity/ability for meaningless pain and torture with no end in sight. At that point I'd like enough saved up to make one last visit to Hawaii, among a few other potential states.
- WrtCdEvrydy 6y ago
  Cancer just kills you, Alzheimer's kills everyone around you as they realize all the memories they had with you are gone.
- treeman79 6y ago
  It’s a crushing feeling. At one point my kids walked in the door and I was confused as to who they were. Thankfully it was something else, and was cured. But it was a couple years of despair.
  - onemoresoop 6y ago
    Glad it didnt take you, must have an great relief when the blood thinners cleared your mind. I have some alzheimer in my family and am horified at the idea of dragging my family through it if I get it. Im still young, in my 40s and i have some time left, but only when I hear Alzheimer it makes my skin crawl. My grandmother was the last one to be affeced by it.
treeman79 6y ago
Was in severe mental decline for a few years. Doctors had no clue. Was put on alzheimer meds. They did help, but not nearly enough. I Went on blood thinners. All cognitive problems resolved in a couple of days. Turned out it was a clotting disorder. Two actually. Neurological symptoms were resolved by a hematologist. Turned out the alzheimer med was acting as a mild blood thinner for cerebral fluid. So it was the right idea. I imagine lots of alzheimer patients are on blood thinners, so unrelated. But outside the box thinking is still vital.
- jjgreen 6y ago
  Really nice to hear a good news story in these desperate times, welcome back. :-)
- copperx 6y ago
  Do you know the name of the blood clotting disorder you have?
  - treeman79 6y ago
    Factor 5 leiden. and Sjogrens.
    - toomuchtodo 6y ago
      Would you mind sharing which blood thinners? My partner has one of the conditions you mentioned and we’ve had a heck of a time trying to get care for it.
      - treeman79 6y ago
        I was on elequis , then xarelto. But I couldn’t tolerate the side effects. On pradaxa now. It does the job. Hard on stomach. Was a nightmare getting hematologist to switch meds. A few missed doses and symptoms start coming back. Vision problems, then ability to talk write and think. Then one side starts going numb.

ghransa 6y ago

For the individual yes it would still be bad news and folks likely won't want to get the screening. For the potential development of a therapy, identifying it early would let you have a pool of candidates to be tested.

graeme 6y ago
This may change if early screening leads to interventions that can slow the progression.

sandworm101 6y ago

There are plenty of diseases we can detect but not, yet, treat. There are other uses for such knowledge. The diagnoses person can adapt their lifestyle to accommodate the inevitable disease progression. That directly aids the individual. And knowledge of the person's inevitable decline can be used by the rest of society. Children can make necessary arrangements. Safety measures can be put in place, preventing unnecessary injury to the individual and others. If someone has been diagnosed with an inevitable rapid onset of Alzheimer's, they probably shouldn't retire to a cabin atop a mountain accessible only by helicopter.

FL33TW00D 6y ago

I work in this field and whilst it's true that there is no direct medications that can seriously slow or halt the progression, there are effective avenues for slowing it via diet, exercise, reduction of stress factors: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5546647/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5546647/ Early identification absolutely matters, the question is HOW early. 5 years doesn't do much, 15 years? You can change your entire lifestyle and the changes can take effect with that much time.

nikkwong 6y ago
I believe that my mother may be suffering from the early stages of Alzheimer's disease. It seems to have plagued all of the women in her ancestral family lineage, and she is therefore well aware that she will likely inherit it. Because of this she has tried to be as healthy as possible her entire life in terms of diet and exercise; albeit, she's now at the age where these issues may start to surface. Is there any benefit for someone like her to get tested?
JamesBarney 6y ago
That article does not look promising. Its a laundry list of "Found association, tried RCT, RCT showed little to no effect", "Found association, currently trying RCT", and "Found association"

melling 6y ago

No, it does help. They cover that in the article “Early diagnosis is important because it could offer more opportunities to treat the disease. Dr Rosa Sancho, head of research at Alzheimer's Research UK, explained that previous clinical trials of drugs had failed because the patients enrolled in them were too far advanced in their illness, and by that time it was "too late".

RhysU 6y ago
Early diagnosis will help those who come after by providing more opportunities for research. It is likely too late for any presently afflicted person. Personally, I would not want to know.

DoofusOfDeath 6y ago

If nothing else, I'd think that having a good test for early diagnosis would help future cure research, for a few reasons: - Whatever specific thing is being tested becomes a candidate for future interventions. - It could give researchers a tighter pool of candidates for longitudinal studies. - As others have mentioned: any treatments that require early intervention have a better chance of working. (Similar to cancer, I imagine.)