We Are Entering the Age of Alzheimer's
newrepublic.com
newrepublic.com
I very strongly feel, like many people probably do, that I would not want to live with dementia. I would not want to live that non-life, I would not want my family to have to experience it, and I would not want to burden them with my care. In the not-unlikely event that I'm diagnosed with Alzheimer's or some other form of dementia, I would want to end my life while I'm able to competently choose to do so. I would want to do so with quick and painless drugs instead of a gun. However, assisted suicide is only legal in a handful of US states, and then only in cases of terminal illness with less than six months to live. There is nowhere in the US for an early-state dementia patient to commit assisted suicide.
It is currently legal in Switzerland to do so, and people have traveled there for that very purpose. [1] Other people have committed suicide without assistance to avoid the ravages of dementia. [2]
I'm aware of the counter-arguments to assisted suicide: that it can cross the line into euthenasia, that it makes the most vulnerable in our society even more so... but still, there has to be some way for this to be legalized.
What to do? What are some concrete proposals for how to alter existing legislation to allow assisted suicide in cases of dementia? Does anyone have personal stories that make the argument against it?
[1] http://www.bbc.com/news/health-22715363 [2] http://news.nationalpost.com/2014/09/01/ethically-this-seems...
The article does point this out which I think is also relevant.
“ .. if you do anything, such as smoke a bunch of
marijuana in your 20s and 30s, you may wipe out all of
the inflammation in your brain and then things start
over again. And you simply die of old age before
inflammation becomes an issue for you,” Wenk states.
Yeah that really sounds like it solves the root problem.
If your family adopted this tradition, many problems would be solved. Many complications become greatly simplified. It's much more dignified than drug-assisted suicide and certainly more dignified than going through Alzheimer's.
In fact, I think it's more dignified than simply dying of old age.
Give me the barbiturates any day.
I'm no maritime law expert, but I wonder if it's possible to offer assisted suicide in international waters, similar to abortion ships. It'd be much more accessible than traveling to Switzerland.
My father had Alzheimer's. He was given six months to live but my mother was too good at taking care of him. It took him about three more years to actually die. At some point, I got a copy of the death certificate. One of his diagnoses* is a form of "anorexia." The picture of him in his casket was unrecognizably thin. In other words, he basically took three years to slowly starve to death, in spite of being given excellent care.
While he slowly starved to death, he still drew two retirement checks. I am currently homeless and was homeless for a good portion of the three years it took him to die. Part of the money he still drew for still drawing breathe helped keep me and my sons fed. When he died, I was glad his suffering was over but I also worried that it would mean more suffering for me and my sons.
I have a different condition. It is medical and incurable and comes with a death sentence. About 13 years ago, I spent about a year at death's door. I was told "people like you don't get well." I have figured out how to get well. I sometimes wish I had died 13 years ago. Getting well has involved a lot of suffering, plus a lot of people think I made the story up or something, and because I am destitute I struggle to get enough to eat every month.
On the other hand, I have solved a hard problem: Getting well when that is not supposed to be possible. If I ever solve another hard problem -- getting the world to believe me and finding a way to effectively share the information -- it may help a lot of people. Or it may not. I might yet die on the street, in obscurity, just some "crazy" homeless person suffering what other people think are delusions.
Some people with my condition hold on and do not commit suicide, in spite of how miserable it is, because they are hoping for a cure, for a medical miracle. Things have gotten better. Average life expectancy has roughly doubled in recent decades. I once saw an email from a mom saying "My child is now 18. Life expectancy is currently 36. When he was born, it was 18."
I don't have any answers for you. Thirteen years ago, I was not looking to get well. I was just looking to hurt less. I would have welcomed death. Had assisted suicide been an option, I might have taken it. I often think about that when such discussions come up. My oldest son has the same thing. He was 14 when he was diagnosed. He is now 27. He, at least, has a brighter future than he should have had because of what I have been through. He, also, has gotten healthy, but without first spending a year at death's door. It does matter to me that I have at least done something for my children.
I am sorry for what you are facing. I am sorry there seem to be no easy answers for some things.
* edit: By "diagnoses" I mean the listed causes of death, I think. I don't have the death certificate in front of me.
>> competently choose to do so.
At least with Alzheimer's, there is no bright line between competence and incompetence. It's a relatively slow slide into incompetence. And not an even progression, since in fuzzy area there may be periods of competence mixed with periods of incompetence. I think big part of problem for person with Alzheimer's to make decision of suicide is to have the resolve to do it early enough, while they're still clearly competent and would have much more time as a competent person, instead of waiting to try and milk out as much time as they can. Cause if you wait you're likely to forget your strong desire (I'm not joking here) or simply lack the resolve to do the deed.
>> I would want to do so with quick and painless drugs
>> instead of a gun. However, assisted suicide is only
>> legal in a handful of US states, and then only in
>> cases of terminal illness with less than six
>> months to live.
I'm not sure why, but you seem to think use of "quick and painless drugs" requires use of assisted suicide. Maybe one solution would be for someone to publish some "How To" information on how to assemble and use a quick and painless drug solution, all on your own. Then at least anyone worried enough about developing Alzheimer's would have a length of time measuring in years to get their solo-suicide plan in place.
I say this as a person who hopes he'd be able to take his own life before incompetence comes. My father and several members of my extended family had Alzheimer's. I think that people who lack experience with it are sometimes unaware of how Alzheimer's robs a person of their personhood. It's not pretty and nobody should ever have to go through it.
There are a lot of sites and organizations dedicated to that exact thing. An interesting one, in my opinion, is "Max Dog Brewing"[1] which uses nitrogen as an alternative to the helium asphyxiation technique. No drugs required.
I regret that this comment is so brief, as I don't want it to appear curt. I just have a lot of opinions that I don't feel like putting in this thread.
The best you probably can do is to repeatedly state something along the lines of "if I haven't repeated this statement for a month, ask me about it. If I am competent, I will repeat the statement; If I cannot, and don't answer the question, try again a few times in the next month. If I never answer the question, I would want to die."
That would give those who would have to decide about your wishes at a time where you cannot communicate them anymore a track record of what your past self thought the wishes of your current self would be. It still would be a tough decision for them, but you cannot give them more.
Would you also deny others pain-relieving medication?
See, your philosophical stance is admirable. In my mind, thinking of pain as a positive thing is a healthy approach to life. What I find deplorable is forcing your personal view on others. That is pure righteousness.
Indeed, righteousness is the underlying problem here. Taking one's personal views on life ('... a crucial part of the human journey ...') and believing they are a universal truth. Once this belief is formed, the natural conclusion is to force others to live by it, because it is the Truth.
How about we let everyone decide what to do with their own lives, as long as they do not inflict harm on others?
Only I don't. But how does it felt? Do you really stoop to being so low a human being as to wish BS upon other people because you disagree with in a discussion?
Do you think that makes you better than whatever you think he is?
I do not merely disagree with his position. I consider it vile and a threat to me and everyone I know. It is one of those positions where compromise is immoral. Some disagreements are not matters for civilised discussion if you actually believe in it, slavery, religion, gay rights, morality in other words.
I feel just fine about wanting an end to Alzheimer's, to aging and senescence in general and I feel equally fine about wanting him to live out his beliefs about how suffering brings meaning to life.
There are some options in the US, just fyi.
I know someone who managed to obtain a lethal dose of the drug they prescribe in Oregon. He believes in the right-to-die movement but lives in a state that will probably never allow it. Before anyone asks, I don't know how he got his hands on it.
"How to Die in Oregon" is a heartbreaking documentary on the right-to-die issue that brought me to tears (I don't cry easily). The assisted deaths that occur at the start and end of the film are punctuated by the patients reassuring their family members that they are in no pain as they say goodbye. Both had low quality of living due to their respective illnesses, but they got to say goodbye on their own terms and with dignity. Very touching.
If enough people chose this route, it'll help a big deal.
1. You'll need a much smaller retirement package.
2. You'll help improve this technology (by spending money on it).
3. Who knows about the future?
"Somewhere in the process your mind very quietly and without fanfare gives up the ghost. It starts with forgetting a couple of little things, and progresses until you have no idea what’s going on ever. In medical jargon, healthy people are “alert and oriented x 3″, which means oriented to person (you know your name), oriented to time (you know what day/month/year it is), and oriented to place (you know you’re in a hospital). My patients who have the sorts of issues I mentioned in the last paragraph are generally alert and oriented x0. They don’t remember their own names, they don’t know where they are or what they’re doing there, and they think it’s the 1930s or the 1950s or don’t even have a concept of years at all. When you’re alert and oriented x0, the world becomes this terrifying place where you are stuck in some kind of bed and can’t move and people are sticking you with very large needles and forcing tubes down your throat and you have no idea why or what’s going on.
So of course you start screaming and trying to attack people and trying to pull the tubes and IV lines out. Every morning when I come in to work I have to check the nurses’ notes for what happened the previous night, and every morning a couple of my patients have tried to pull all of their tubes and lines out. If it’s especially bad they try to attack the staff, and although the extremely elderly are really bad at attacking people this is nevertheless Unacceptable Behavior and they have to be restrained ie tied down to the bed. A presumably more humane alternative sometimes used instead or in addition is to just drug you up on all of those old-timey psychiatric medications that actual psychiatrists don’t use anymore because of their bad reputation."
I would much much rather be dead.
I noticed that there's a Glenn Campbell documentary that covers his Alzheimer's. He was a little before my time and a superstar in his time.
http://en.m.wikipedia.org/wiki/Glen_Campbell
Maybe the movie will bring a little more attention to the disease.
When we are talking about a disease with base incidence of only 3 percent even for seventy-year-olds, we are so far talking about a disease that has been a low-priority disease. It's only in recent decades, as life expectancy has increase at all ages from 40 on up to 80,[1] that a lot of people have outlived heart disease, cancer, and the infectious diseases that used to cut life short at younger ages. As more people who are otherwise healthy age into ages at which their risk for Alzheimer disease increases, there will be increasing research and study of treatments related to Alzheimer disease. The fact that there are still people who can live past age 100 without getting severe signs of any kind of senile dementia suggests that we have something to discover about individual differences to find out what protects some people from Alzheimer disease decade after decade after decade. There is no need to give up hope. Incremental improvement--a little change in treatment here, a little change in lifestyle there, and a better understanding of prevention overall--is most of what has improved healthy lifespan in relation to other diseases, and there is no reason to think that Alzheimer disease is any different.
My own maternal grandmother, born in the 1800s, lived to the age of ninety-nine. Near the end of her life, she plainly had some kind of dementia, and presumably that was Alzheimer disease, and I think that was her cause of death. But she had a lot of interaction with her eleven children and thirty-eight grandchildren and various great-grandchildren for a long time after she was widowed, and I don't think anyone in the family looks back on her life and thinks that her death needed to be hastened. Some people retain memories of childhood in extreme old age even after they no longer form new memories of current events. For my grandmother, this was shown by one visit I had with her in her mid-nineties, when she no longer was sure who I was, but still remembered and was able to sing along me a song she had learned in childhood. (The song was in German, her native language, so I know she had not heard it for many years by the time I sang it with her. I had learned the song only when I studied German in university studies.) So don't give up on communicating with your aged relatives. Try to reach back in time to the best memories they have of their childhoods. They may surprise you with their understanding for a long time. And by a long time from now, when all of us reading this are old, Alzheimer disease may be largely a thing of the past.
The lengthy second-person-viewpoint account of caring for an aged parent with Alzheimer disease in the article is disturbing and moving. It reminded me deeply of caring for my late dad during the last six years of his life, when his thinking was completely intact but his mobility was destroyed by a spinal cord injury. There are a lot of devastating forms of disability that human beings can face, and, no, Medicare in the United States does not take care of patients with long-term disability of any kind. I did feel a lot of futility when talking to my dad (who had difficulty talking not because his brain wasn't working, but because he was paralyzed from his second spinal vertebra down, and couldn't even clear his throat or swallow on his own). He wanted to walk again--or at least to be able to scratch his own nose again--but he never did after his injury. Taking care of a helpless relative is rough--any time, for any reason--but we didn't give in to the idea that he should die early just to make our lives more convenient. He died only when a lot of other health problems (many of them aggravated, surely, by six years of immobility) piled up just after his seventy-eighth birthday. There a lot of memories I have of my dad (and my children have almost ALL of their memories of their grandfather) after the day on which his spinal cord was injured. I was willing to interrupt a career transition and diminish my "free" time to almost nothing to be with him in his old age. That wasn't easy, but that's what we did.
[1] http://www.nature.com/scientificamerican/journal/v307/n3/box...
Don't say never until you have had to take care of one.
"1 percent of 65-year-olds, 2 percent of 68-year-olds, 3 percent of 70-year-olds. After that, the odds start multiplying. The likelihood of your developing Alzheimer’s more or less doubles every five years past 65. Should you make it to 85, you will have, roughly, a fifty-fifty shot at remaining sane."
1% at 65 doubling every 5 years for 20 years = 16%
3% at 70 doubling every 5 years for 15 years = 24%
What am I missing?
1% at 65, 3% at 70 means that, in the 65-70 year range, about .4% of that cohort develops Alzheimer's per year. Double that to .8% per year in the 70-75 year range and you get 7% incidence at age 75 (3% had it at age 70, 4% got it between ages 70 and 75). Continuing, you get:
- 1.6%/year in the 70-75 range gives you 15% incidence
- 3.2%/year in the 75-80 range gives you 31% incidence
- 6.4%/year in the 80-85 range gives you 63% incidence
That's in the right ballpark.
Wouldn't your method leave you with 31% at the end if you just used this age bracket once and didn't have the extra double cycle?
But for the record, I'm sure you are right. The ODDS of developing start doubling. Not the amount of people afflicted (No doubt a somewhat complicated figure as death, not insignificant at those ages, starts changing the equation. Do people with Alzheimer die at the same rate as those without?). Thanks for the explanation.
This comparison is a bit fishy, isn't it? The 4 and 90 don't have much to do with each other, since the age at which people die isn't taken into account. Even if everybody lives past 65, if they all die at 66, only 1/66th (or 1.5 percent) of the population is older than 65.
Since everything else we've tried to get overweight people to stop eating so much has failed it might be worth looking at different approaches.
Because unhealthy food is delicious, cheap AND addictive.
>Since everything else we've tried to get overweight people to stop eating so much has failed it might be worth looking at different approaches.
Well, a ban on refined starches and corn sugar work quite well. People were much healthier (from an obesity perspective) when such products were not available.
Do Scotland, New Zealand, Hungary use "corn sugar"? We don't use it much in England and we (along with those other countries) also have problems with obesity.
I'll happily accept that calories from sugar are a problem.
How much of a problem, though, compared to say, the US? I've travelled quite a bit in Europe, Asia, etc, and I've seen nothing compared to the US level of obesity. Heck, the kind of people you'll see in a Walmart (and not isolated -- tons of them, and all over the states)...
I guess it's also other stuff: deep fried anything, Sneaker and Mars bars, chips (crisps), BS "sports" drinks, sodas, etc etc.
That's a really bad choice, though, that a lot of people make. Perhaps it will be good if that choice was eliminated, or made more difficult with a large tax. At least then people would think twice before ordering a $10 corn-syrup soda vs a $2 no-sugar one.
>Wouldn't this have a big impact on the food industry, too?
Well, the smoking bans also hurt the tobacco industry too. If an industry relies in causing people harm by using cheap substitutes (e.g corn sugar for sugar etc), or selling addictive shit, let them be impacted.
That's just it, I don't like the idea of bullying people into healthy eating. I don't want to end up in a future where it's illegal to consume more than 2000 calories in a day. Fortunately people don't seem to like this idea given the reception of the large soda ban in NYC.
Leaving people to freely chose their food is obviously not working. We could pay people to eat more healthily - would you support that? So why is it different to add costs to unhealthy food?
But in this case I don't really consider it bullying but rather punishment to greedy industries using crap materials in their food products.
http://www.sciencebasedmedicine.org/bill-and-hillary-clinton...
Two months after I first saw Isabel and discovered and treated the underlying causes of her inflammation–after, as she says she, “stopped eating gluten, dairy, and sugar and took some supplements” she was symptom free. In less than a year, she was completely healthy, her blood tests were normal, and she was off all her medication.
----
That is pseudoscience.
I would argue that a sample of 1 with no control is not worthy of being called science.
This is true even for people doing science who don't have an agenda.
That other stuff? It's mostly bullshit spewed out by charlatans who are exploiting people.
The problem is when you take that one patient, and hold up that one example as proof. That is bad science.
How do you know that for sure? Is it impossible for a doctor to be motivated by money?
In fact, the medical literature is full of case studies. Do they prove anything? No. But they suggest things to try in subsequent cases that seem similar -- and if a technique finds enough success in practice, maybe it's worth doing a study on.
If you don't have a statistically significant sample size and a control group, and you think it proves something, you are conducting bad science.
I don't know what source that was quoted from or what other claims that document might make. (The quoted passage doesn't even tell us what theory its anecdote is being presented in support of.) But to claim that this passage in itself establishes that the source is "pseudoscience" or "bad science" is, frankly, ridiculous.
You know, the scientific method has no special dispensations for orthodoxies -- if anything, the very notion of an orthodoxy should be repellent to a scientist. But scientists are human, and many people are attracted to orthodoxies.
Yet if there's anything we know, it's that all theories, orthodox or not, have their limitations. Given that, isn't it a good thing that there are people willing to explore unorthodox possibilities even if most of them are wrong?
I'm not suggesting credulity. I'm suggesting humility: a keen awareness of how much we still don't know.
That really depends on who prepared your homeopathic treatments. They aren't regulated or subject to reasonable quality control. A few years ago a couple of manufacturers had to pull a number of products - the FDA had discovered that they contained medicinal quantities of actual medicine (no wonder they worked for some people!) Worse, because of the lack of quality control, the dosage was wildly inconsistent from batch to batch, and of course with the active ingredients not listed anywhere people were having allergic reactions to medicines they didn't think they were taking.
The homeopathic medicine market is not in anyway trustworthy.
"in America, the placebo effect is more effective than many pharmaceuticals" - There's nothing particularly unique about Americans that would require different treatment than humans in the rest of the world (except for perhaps the incredible obesity problem).
"I'd recommended homeopathy as well, knowing that it can do well and for sure do no harm compared to drugs that just address symptoms" - Actually, there is harm is encouraging people to spend money and time on things that are demonstrably false, because it prevents that time and money from being applied towards worthwhile causes (like finding effective treatments for Alzheimer's).
"being a doctor who's seen a lot of patients, why would I doubt his recommendation?" - An MD degree does not bestow infallibility or scientific inscrutability on the people who have them. MDs disagree with each other pretty routinely, so if you're curious about a doctor's recommendation, 1. find another doctor who disagrees, and try to understand why they disagree, and 2. read some summaries of the actual scientific studies behind whatever the recommended treatment is. If you can't find any scientific studies supporting the treatment, that should be a warning sign.
"Maybe it really works for some, how can I know?" - http://lmgtfy.com/?q=can+placebo+help+pms turns up http://www.ncbi.nlm.nih.gov/pubmed/19678774 and http://www.ncbi.nlm.nih.gov/pubmed/8533564. Both of those have really small sample sizes (85 people for the first, 35 for the second), but in both studies, placebo was less effective than the actual therapy being tested.
2. I agree with what you said on second opinions and doing your own due diligence, but my point was different - I'm not a doctor, so, I'd take his advice on PMS with a grain of salt although I personally doubt that the placebo can help with that. Hyman's main theme is reducing sugar intake and I honestly haven't found a doctor so far who argues with that. I've only found people living in denial, because they are so hooked up to that substance.
3. As I said, I personally don't believe that the placebo effect of homeopathy can help with PMS and many other conditions, but maybe it does work better for women who look alternative therapies.
You've said a bunch of stuff in this thread that makes me think your cites are goig to be low quality, but may e I'm wrong and you have links to randomised controlled studies.
But you still haven't cited a single study.
Your spittle-flecked diatribes don't put forth anything remotely resembling the scientific process.
Cite your sources and their studies, not their blogs. But frankly, you're well through the rabbit hole and I don't think you realize how out to lunch your insistence on avoiding those in favor of crackpot pseudoscience is.
1. Amyloid plaques forming between brain cells.
2. Neurofibrillary tangles forming in brain cells.
3. Loss of brain cells, likely from the build-up of 1 & 2.
All three of these things happen to everyone as we age. This is true no matter how good your immune system or diet is. Many of us just get killed by something else before it becomes pathological.
1. Many more people reach old age than previously (due to reduced infant mortality), so old age diseases are a larger problem for society since a larger portion of society is getting old. (not citing a source for this because it's extremely well established)
2. Life expectancy for various ages (not just starting at birth) has increased steadily over the last 100 years. Check out page 3 here: http://www.osfi-bsif.gc.ca/Eng/Docs/DEIP_Gallop.pdf
Life expectancy improvements at various ages over the past 100 years:
At birth: +27 years
At age 15: +14 years
At age 45: +10 years
At age 65: +5 years
At age 80: +2 years
Functional medicine is not responsible for the increases in life expectancy.
Not-so-fun fact: ever since Jeanne Calment died in 1997, the maximum age (as recorded by the GRG) has kept falling: while Calment hit 122, we're now down to 116 or so, which is much more impressive than it looks because the annual mortality rate for supercentenarians is like 50%+.
I've wondered more than once if she was some kind of unique freak of nature - she was even a smoker!