This is so painful to write, Alzheimer's. When my Dad was diagnosed in 2005, it was an endless battle of not only accepting this horrible diagnosis but ensuring the best of care with our minimal amount of resources in a rural community. Constant battle after battle till the day he died on January 1,2013. Whether it's a famous person who comes out to acknowledge her journey with this terrible disease or someone like my Dad, an ordinary man to most but a great man in my eyes, the best resources should be available to all who are diagnosed with this terrible disease but that only exists in a perfect world. Right now that perfect world does not exist.
36
Just recently following the death of my Father in a Nursing Home,he was 98 yrs. old...as well as my Mother passing at 90 yrs old....Having spent time in the NH everyday..my thoughts were this is not going to happen to me meaning complete disassociation of my surroundings...now Dad was a healthy Greek who only suffered slightly with more physical ailments,Mom was difinitly suffering the Alzheimers as she had been on Myelodysplasia cancer infusion drugs four years prior..this degrades the system with mercury..people please try to understand the food...if u eat processed food...with the preservatives,,look at incidence of Altz.. in Europe...or Med Countries..just my thought..also you have a brain scan showing deterioration in the Brain before not an autopsy after unless you want to...I mean there is no predictability factor..there are patients in NH with brain Degen deseases, Parkinsons...he was only 65,sad....its a complicated diagnosis because a lot of times its Depression at your body not feeling well and old age people..
4
I have been caregiving for my mother for 18yrs. Every stage has presented different challenges. Fighting with ignroant drs for appropriate and better medical care the whole time has made me an angry caregiver.
Patients desperately need medical research on neuroplasticity/synapse and Alzheimer Disease. This will substantiate the need to educate medical professionals to administer good medical treatment rather than neglect, saying why bother.
Research will validate the need to provide therapies to help sufferers function at the highest level possible for where they are at in the disease. Stroke victim's live brain cells that can be taught to take over function of dead cells. AD sufferers have live brain cells that can also be taught to take over function of those that died. Stroke brains stabilize. AD brain cells are dying everyday. Patients need daily therapy to compensate for dying brain cells.
https://www.eurekalert.org/pub_releases/2017-07/nlmc-dcw071317.php
7
Those of us who survive a parent with dementia need to know the precise type of dementia s/he suffered, but my understanding is that this is only possible with autopsy. Why then does our parent's doctor discourage us from requesting an autopsy (when the time comes), saying he is as good as sure the dx is Alzheimer's?
7
I know that simply throwing money at a problem won’t solve it but let me just say the following:
The USA has spent trillions in the last 3 decades fighting “wars on this” and “wars on that”. The wars in Iraq and Afghanistan, the centerpieces of our idiotic “war on terrorism” based foreign policy, alone have cost nearly 2.5 trillion dollars. And yet Alzheimer’s, dementia, frontal lobe dementia...whatever you want to call it, is pretty much the ONLY thing out there that truly frightens me. Terrorists, mass shooters, muggers, MS 13, drunk drivers, great white sharks, wild fires, Donald Trump…they don’t even come close. Okay…climate change and dysfunctional nuclear weapon command and control systems are a close second. Almost every family I know has had to struggle with this. My own father’s decline was fairly slow and tortuous. A 52 year old relative (early onset) went “fast”…that is in 2 years. Both incidences caused tremendous personal and financial stress on our respective families. Just look around, people! This is impacting almost every family I know and many victims are relatively young. And yet people act like it doesn’t exist.
THIS (a cure or preventive strategy) is the societal problem that I would like to see a “Manhattan Project” sized effort applied to.
60
"[P]atients and those around them sometimes feel relieved when their problems acquire a name and a medical label." In my family, we call this "the euphoria of diagnosis."
5
Stop the "insanity" of calling it dementia. Who wants to be considered demented? Alzheimer's or senility is far more palatable, and really more accurate. Demented historically means a kind of craziness. It is a totally inappropriate word for conditions in which one is partially afflicted. It implies a complete incapacity which is hardly the case. I'm about to go see a 90-year-old singer perform dozens of songs she remembers perfectly though she is incapable of managing on her own from day to day.
7
Dementia is the medical term for this illness, of which Alzheimer’s is one type. Hopefully increasing awareness of this disorder will reduce the stigma; I believe that’s what this article is about. It’s devastating for loved ones no matter what it’s called.
14
i looked this up and it appears you are confusing dementia with demented!
9
How is this even a story, ohh, ahhh, "high profile", says who, Hollywood pop culture news. At any rate, when you get old your brain, bowels, prostate, et al., stop working.
In the mix of this, I will not disclose to my physician that my father has dementia for fear my chances for LTC insurance or cost of LTC insurance will be affected.
I don't necessarily care about people knowing in general, but I don't want to be victimized by an insurance company.
84
Earlier this year, I learned I had Alzheimer's. I wasn't surprises. After all, my mother had been diagnosed with it 10 years ago since passed on. And my grandfather and great grandmother clearly, in retrospect, showed signs of it.
I half expected it.
But what I hadn't anticipated was my son in law, a physician, would end up calling me a liar when I told my daughter I had it. Even after I sent him a copy of a letter from the doctor who diagnosed me based on several MRIs I had undergone under his supervision, my son-in-law refused to accept the fact.
I still wonder why. Why would he cause me of lying?
As of today, I still have no answers, Yet, the hardest thing to deal with was that my daughter has yet to acknowledge the truth, too.
I have been left with nothing silence from both.
Several months ago, I vowed to participate in an experimental program being run by a Boston based memory research effort. My rationale?
I wanted to contribute what I could to the science in hopes that my daughters and grandchildren might have a crack at living Azlheimer's free.
Is it the stigma? Is it denial?
I pray it won't, and I must confess that I am optimistic for myself. For I have seen some pale signs of improvement in my memory, though confusion remains an unpredictable, and there is on-again-off-again stress in my home life, thanks to abrupt mood shifts and anger and the courage my wife shows refusing to lose faith.
But I'm optimistic.
66
@Mel Nunes I am so sorry your daughter and son-in-law reacted in this way. Thank you for participating in the experimental program and I hope the improvements continue.
29
@Mel Nunes
My sympathies to you about your daughter and son-in-laws denial. If your son-in-law is not a physician dealing w/ brain science (usually neurologists, psychiatrists, and many internists) he may not be aware of the progress that has been made not only w/ Alzheimers, but w/ its variants, Vascular Dementia, and Parkinson’s Disease. There is at least one new drug in the FDA pipeline, Glyx-13, formulated by Naurex, which seems to have good effects on memory loss and in some cases, reversing memory loss. It is due out in 2020.
Early diagnosis and treatment is key. There are different types of dementia, some treatable, some not so much.
Both of my parents died of complications of Alzheimers, and it is a dread disease, now s/w treatable. I urgge you to engage in treatment via your neurologis, if you aren’t already doing so.
When I was in med school and residency in the late 1970’s and early 1980’s, there was little that could be offered. That may be why your relatives are acting the way they are to what was (and in large part, still is) a grim diagnosis. If they’d do some investigation, they might find that it is not as bad as they think, though bad enough.
Best wishes,
Sheila Wall, MD
20
@Mel Nunes
I apologize to readers for my typo's. I just don't see the mistakes anymore.
22
As a female lawyer, Sandra Day O’Conner has always been a special hero to me. She has overcome sexism to become one of the most brilliant judges to sit on our highest court. I am a democrat but with Judge O’Conner, party politics did not matter. She was fair , courageous, and above the fray. I love her dearly as a role model to my profession and I see now she is a role model for more than the law, she is one for our lives.
37
@Marie Inserra
Sandra Day O’Conner is an American heroine by any measure of the term. We have lost a great Justice at a crucial moment, for Donald will move swiftly to nominate one of his toadies.
For the rest of us, the nation cannot thank you enough for your years of principled service. You will be missed more than Americans can even imagine. Bless you.
11
You can't tell me that President Trump is all here.
26
The drug candidate, PTI-125 (Pain Therapeutics, Inc.), has passed Phase I trials, and may eventually be approved to treat Alzheimer's.
3
@Fred The chemical structure of PTI-125 contains three methyl (-CH3) groups. If these methyl groups are involved in metabolism of the drug, then it should be possible to replace the hydrogens with deuteriums (heavy hydrogen), and the resulting PTI-125-d9 derivative should have a reduced rate of metabolism, and a longer half-life in the system.
1
I went to Mt. San Antonio College in Walnut, CA where I was a straight A student in difficult courses (including later at a different college, HTML and CSS computer programing); I was about 60 years old at the time. On the first day of class my teacher, Steve Burgoon, patted me condescendingly on the head as he grinned widely. Every single class thereafter he greeted me loudly with "Have you had your Metamucil today?" to the great amusement of the other students. As the semester wore on he added more and more age-related insults, "Have you taken your Ginkgo Biloba today?", "Do you have Alzheimer's?" My mother had just died from Alzheimer's. Most of the students jumped on board and taunted me likewise. I filed a formal complaint which the administration (illegally) refused to hear, saying I was to blame for not taking the teacher aside and asking him to please not say these things.
22
@Maureen McGloin Sounds like you created some insecurity in the teacher and that's the teacher's problem. Sad he wanted to make it yours.
8
@JEM You've hit the nail on the head. When I couldn't get satisfaction through regular channels (school admin) I took to wearing Mt.Sac Sucks t-shirts every day and became known on campus as the "Mt. Sac Sucks Lady". https://www.youtube.com/watch?v=Q-gyfnsy4b8&feature=youtu.be
3
Dementia is a chronic disease that has little to do with "aging". Brain inflammation starts decades before actual symptoms appear. Diet is a strong precursor to dementia. Diets high in sugar and refined carbs are big contributors. Gut health is also hugely important. Stress, antibiotics, pain killers and infections can drastically alter and obliterate beneficial strains of bacteria that guard against inflammation. Our bacteria communicate to other systems in the body. The gut brain axis is well known. The connection between leaky gut and leaky brain has been well researched. If you want to avoid triggering your inherited gene pool stop eating the standard American diet.
13
This sounds a lot like blaming the victim. Isn't this exactly what the article suggests is a barrier to people disclosing their illness: stigma?
12
@sheila datt How do you know? What facts is this pronouncement based on? You sound like just another diet/food fanatic, which you probably are.
14
@kbug
Much of the advice about dementia sounds like blaming the victim. If he had just exercised more, if he had eaten a better diet, if he had worked crossword puzzles, etc., then he wouldn't have it. My husband did all of those. He was an extremely intelligent college professor. And he got dementia. It lasted 10 years until he died last February. He had severe behavioral problems which led to his being in 4 different facilities because they wouldn't keep him. Each time he had to leave one, it was more difficult to find another one that would take him. I'm now waiting for the results of an autopsy to find out the type of dementia he had. Oh, yes, most of our "friends" disappeared, This disease is hell for both patient and familiy.
14
Some of us might wish to send a note to Ms. Sandra O'Connor to thank her for her years of service, and her ongoing courage to address the public on this disease.
Some of our finest public minds have been afflicted with dementia, and it is Paula Span who brought to this reader's attention that Alzheimer's is still regarded as a 'stigma' by a majority of us.
When our Elders go into a different dimension, we often tend to go into denial, contradicting the above, and even getting angry. 'Ma, just put soup in the tea kettle', once wrote a friend, with an attempt at humor; her mother lived until she was 95.
She sends articles this way on how to prevent Alzheimer's, and when she visited, I nearly put kitty kibble in her cereal bowl. Having passed the age of 65, some friends are alarmed.
The unkindness of exchanges is to point out 'you have already told me this'. In my parent's day, before Alzheimer was recognized, it was known as becoming 'gaga', or senile.
A friend who looked after her mother in dementia recently sent 'Lost for Words', but not to her sister because we all react differently.
Another, in possession of a brilliant mind, worries that her brain is failing. Are you getting enough sleep, I ask. Good sleep appears to be one factor in helping to stay clear as a bell in advancing years.
There is a difference between Alzheimer's and Dementia; the former usually is of a ten year duration; the latter is when one goes to another reality, much like Dream Land.
1
@Miss Ley
Miss Ley, Alzheimer's disease is actually a form of dementia, the most common one, accounting for 60 to 80 percent of diagnoses. There are many others, including vascular dementia, dementia from Parkinson's disease, frontotemporal dementia and Lewy body dementia.
5
My dear mother, suffering from dementia, as she neared the end said, "I so miss so many things, if I could only remember what they are."
24
What's the cause of dementia? How does one get dementia? What are the symptoms of dementia?
2
@William Smith Dementia is a syndrome, or collection of symptoms, caused by many different conditions, of which Alzheimer's disease is the most common. Alzheimer's is generally understood as arising from a proliferation of plaques and tangles in the neurons of the brain, but we still aren't sure how they happen and why some people are more susceptible to developing them. If you want to avoid other types of dementia, like vascular, you are probably well advised to mind your heart health as circulatory issues cause vascular dementia (the second most common dementia). Symptoms vary - the most obvious is loss of short term memory and difficulty remembering how to perform daily tasks or recognize what should be familiar spaces and people.
1
People have come out about dementia and Alzheimer's but most don't pay attention. Remember President Reagan--a sitting President with Alzheimers! With baby boomers aging, it is becoming more prevalent, although there is also early onset of the disease. A tragedy of a large magnitude for the families and society.
5
@Laura West Perhaps there is yet another sitting president with the disease, from which his father suffered?
20
Paula Span’s article should be required reading. During my mother’s 14 years of living with Alzheimer’s, I watched as she was slowly but surely abandoned by friends and family, like a pariah. The courage of public figures and their loved ones to share their diagnoses and experiences helps us understand that no one is immune from being touched by this disease, and that ignoring this unassailable reality doesn’t change it. Kudos to Paula Span for bringing this to the forefront in a thorough and enlightening way. Like victims of mass shootings, there but for the grace of God go all of us.
18
My Gratitude to Mrs. O’Connor for her leadership in this plight. I am 81, long-retired Licensed Family Therapist and Lutheran pastor. A Stroke 7 years ago has affected my functioning, but the most devastation for us was that our 55 year-Old Daughter
Just died last month after 5 years+, having been ....diagnosed with Alzheimer’s. We are actually Grateful for a disconnected Jaw that limited a beautiful Life that could have had a much longer duration of suffering. I am very thankful to Public people like Mrs. O’Connor who will Share with usin this present devastation.
38
Any adult of sound mind (no dementia, only at general risk of Alzheimer's) can take the proactive step of signing a document stating they want only comfort care if demented. This document should prevent the years of life extension under horrible, financially ruinous conditions, that can result when an Alzheimer's patient is repeatedly given antibiotics for incipient pneumonia.
18
@SMG There are many people with dementia of various kinds whose lives haven't been extended by any extraordinary measures, or even ordinary ones. Their bodies just keep ticking away, undaunted, while their minds are essentially gone.
12
@MegWright I totally agree, but a lot of antibiotics are used to treat pneumonia in the Alzheimer's elderly cohort. Certainly prior to antibiotics, many elderly dodged Alzheimer's by dying of pneumonia. Pneumonia isn't necessarily an easy exit. Still, it was called by some in medicine "the friend of the old" because it meant the release of death came before quality of life became abysmal. Human immune systems get weaker with age so antibiotics are in a sense unnatural interventions in these situations.
8
@SMG Or you could be proactive, do your own cognitive testing as doctors certainly don't test for it, and choose medical aid in dying. We had a woman here in Canada, Gillian Bennett, document her slide and reasons to not live with this illness past the competent stage, in her webpage deadatnoon.
8
This is very sad and makes one feel powerless to stop the forces of aging.
It should also put an end to these self-help articles and ads telling people to 'keep your mind busy' by playing whatever puzzles and games they're selling. This honorable woman's mind was always very busy.
33
@Em - My partner and I are participating in a year-long Alzheimer's research project. We committed to intensive cardio exercise 5 days a week for 45 minutes a day. It's a lot for someone who's older, but I agree completely with the premise of the study: that good cardio exercise to get more blood flow to the brain can improve cognitive function. Various university med centers will have a number of Alzheimer's research studies that people can participate in. It may or may not help the participants themselves but it will certainly further the understanding of Alzheimer's.
10
Sandra Day O’Connor is a courageous woman and even in her later years she is a leader just as she was to assume her place as the first woman on the Supreme Court.She still exemplifies honesty and a passion for the future.It helps others to know that dementia and Alzheimer’s can come to anyone in life and can be acknowledged.alzheimers needs more attention, more medical research, and more facilities for people who are unfortunate enough to live with it.Their caregivers need much more compassion and support.There is so much more to be done.Now is not too soon.
14
It is hard to put into words the feelings and the profound difficulty that is involved when confronting a loved one with any form of dementia. I know. I see it daily as I visit a once brilliant, kind, good man, a beautiful man,..a man to whom I have been married for 51 years. I am an RN, yet I am helpless. I cry often. Never in front of him, though. Our daughters cry often as they watch their hero decline. We learn to live life within a life.
Yet I treasure these moments with my husband as do his children. We still witness those brain cells working, thinking, and still curious. We are lucky in a small but cruel way because his dementia is secondary to Parkinson’s Disease where the physical overtakes the psychological. Nevertheless, I am determined for the rest of my life to be an advocate for these vulnerable human beings. Science and compassion will win the day, will be the cure.
41
@Kathy Lollock - My sincere empathy. My husband died a number of years ago after 32 years of Parkinson's accompanied by about 15 years of worsening Lewy Body Dementia.
6
@MegWright Thank you for your kind words. That Parkinson's is sure a tough one....
2
An extraordinary boss of mine some years ago came down with Lewy Body Dementia. In his case, he was gone so quickly.
His loss changed my life, as he had been a wonderful mentor. Lewis Owen, of Lexington, KY, was his name. He was publisher of the Lexington Herald Leader.
His last words to me were to beware of another manager. I didn't understand what he meant by that, and I did not follow upon on his advice because I had no idea what I needed to do. After Lewis died, I moved to another newspaper, and thereafter found myself ostracized even by very long time friends of mine.
To this day, some refuse to refuse to reply to my emails.
And that's when it hit me:
I had been "stabbed" in my back.
Lewis had tried to help me even as he was dying.
God Bless the man.
Thank you for this important article. Everyone should read it.
I started to notice my mother’s erratic behavior when she was 67. It wasn’t easy to discern as she had worked as a teacher and lived alone for some time, had been a horder all her life (reaction to extreme childhood poverty), and rarely spoke about personal issues. A year later, she was diagnosed with mild cognitive impairment. We were lucky to receive wonderful advice and support from medical, financial and housing professionals . Still it was painful and stressful taking on this obligation at a time when this disease was just coming into the public conscience. I moved her three times, the first from her city to mine, as the disease progressed to full blown Alzheimer’s . She died 18 years after diagnosis, at the age of 86 in December 2016, after going through each of the stages. While she was a lifelong worker, reader and learner, I believe poor nutrition and family disfunction as a child during the Depression, adult obesity and lack of exercise, and stress, definitely contributed to her diagnosis. As the two year anniversary approaches, I am hopeful that continued research and new health recommendations can help to eliminate this scourge in the not too distant future.
14
I offer no advice, no condolences, such would insult the great minds - really of all our elders - who have gone beyond. To die? I accept. It is the inevitable culmination of life. I’m already living on grace, time I shouldn’t have. Yes, the guilt of surviving.
My fervent prayer, if prayer makes a thing real - is that I can see death coming. That I can watch. That I can know for a flash, this mystery. It stalks, informs, and ultimately makes us human. I do not want to die lost in wherever and whatever dementia is.
I’m alone and a long way from dead or even an intimation of it. I’m still kicking and raising dust, still trying to do some small thing in this place where the road has left me. I’m utterly alive, but I do wonder at the little quirks I don’t think were there. I’ve always skipped or briefly lost the plot in my whirling dervish life. That’s not new. However, it seems that CRS (The Times will not print its meaning, but anyone older knows), maybe it’s a bit stranger? Who knows where this one mind goes?
If this wasting happens and anyone is close to me, please, don’t lock me up. Don’t waste a moment of another’s precious life caring for me. Instead, take me camping - out into this vast and stunning Sonora. Give me a blanket and let me sit, sit waiting west. I will watch that sun leaving. I will watch death coming. I want to see.
28
my husband of 45 years took his life several months ago. he did not have dementia, but for three months had become increasingly depressed and dysfunctional. the pain of losing him and losing him this way has been terrible. November 17 is a national day acknowledging another stigmatized health problem --suicide--and raising awareness of (possible) prevention strategies. my mom, who died of dementia complications, at least had some capability to love and enjoy. my husband suffered greatly.
2
My wife Zandra Flemister who in 1974 was the first African American woman hired as a Secret Service Special Agent and who retired in 2011 as a Senior Foreign Service Officer in the State Department has dementia and is in long term care. I have published on her dementia. I speak on her behalf whenever I have the opportunity. Every year her niece Rachel walks on her behalf in Tucson to raise funds for Alzheimer's research.
43
@John Collinge Barbara Smith aka B. Smith is the first celebrity I recall revealing her diagnosis of dementia and then Alzheimer's. The world seems to have forgotten her as if it too has a forgetfulness disease. The book her family wrote about B helped me come to grips with my mother's diagnosis before she was diagnosed.
I just Googled your wife's name. Am off to read all that's there about your beloved. Thanks for sharing her with the world. You're honoring her every time you speak and teach. Be well.
11
@John Collinge Thank you for being so open about her diagnosis and for reminding people of her accomplishments...and to Rachel for fund raising.
4
@Glenda Thank you. Zandra meant everything to me. She was and is a remarkable woman, one who made me a better man. I will never know why dementia took her but do what I can to ease the path that she is on.
4
When President Reagan told the public he was suffering from dementia, many folks here could not help but take one last political jab at him such as; "his entire time in office was demented," etc. I hope those days are past, but I won't hold my breath.
3
@cleo
A number os who don't snark, do believe he was suffering cognitive deficits while in office. It would stand to reason, as usually the symptoms only slowly come to be recognized for what they are when they are too severe to be ignored.
As for a political jab, a lot of people think that his good father persona was undercut by policies which hurt us severely. The fact that he had dementia doesn't make him immune from criticism. He was, after all, a politician, actor and salesperson.
23
@cleo they knew he had dementia and covered it up to preserve their power. To this day we don't know who was calling the shots, but the legacy of the Reagan administration was a harmful one to this country. The honorable thing to do would have been to admit he was unfit for office and step down.
8
As others have commented, there are intractable problems with including an assisted suicide clause in a dementia patient's DNR document.
First of all, will it be an event to trigger this action or will it be the decision of the caregiver? Neither is as satisfactory as the decision made contemporaneously by the patient himself.
And secondly, what if the patient changes his mind? Will his dementia be taken into consideration and this attempt to revoke the suicide clause ignored? That would be a nightmare.
2
@James
RIGHT, Which means as someone who just a few weeks ago lost a parent to this, add an Aunt a few years back, and a Grandparent, the latter to early onset in her 60's. Given the lack of choice in waiting I must commit suicide before diagnosis, before any mental impairment what so ever.. Sooner rather than later!
There is no shame or social stigma attached to dementia. Regrettably, in our society the shame and stigma apply to those who seek swift and assured relief from the disease -- via euthanasia or suicide.
11
My brilliant husband, an Interventional Cardiologist, was diagnosed at age 62 with early onset Alzheimer’s and possibly Lewey Body Dementia. In the last 7 years, our lives have become socially isolated as friends have dropped off. Our once very active physical lives has become one of entertainment by TV. I say, our, because my life is diminishing alongside his.
I am grieving while he is alive. He is grieving for what he has become and knows is ultimately coming.
So he has decided to take control of his life by Voluntary Stopping Eating and Drinking when he feels it’s time. This was not a rash decision but over the last year or so was carefully researched and planned by him.
37
@magtackle. Thank you for stating the fact that “my life is diminishing alongside his”. My husband, a wonderful artist, is suffering from LBD and as we spend much time watching the TV news because this is what he can follow, I think grieving thoughts about my life. Others going about theirs lives without having to serve this thief, dementia”, look so much more alive than I feel, not always, but frequently. I am so grateful when he is really tracking and we can have a conversation and times when he seems interested in what’s between us or around us.
I want to say that I’m sorry for your situation and hope there are times of “being there” in your relationship, still.
12
@magtackle I discovered my grandfather's cause of death from records I'd ordered for genealogy. He died from malnutrition. He simply could not eat and our uncle locked him in a back bedroom where he died from "old age." He starved to death.
I remember all the times grandfather would become lost in the woods; he'd walk away from home and my grandmother had to call people in their community to help search for him; he could no longer take care of the farm or the animals. My father was in Vietnam then and we were told to never mention his father's behavior in our letters. I didn't understand that. It seemed cruel that he not know. There wasn't a proper name for grandfather's decline but we children knew he wasn't there any more.
We can leave directives that will allow us to pass with dignity and humanely BEFORE we become too ill to have a say in how we leave this life. The necessary documents can be purchased online for as little as $15.00 or $45.00.
1
One of the hardest parts of dealing with my mother's dementia was watching her old friends drop away. I understood they were afraid, but I was disappointed. She was always much more than her dementia.
57
@Diane
Perhaps it was too painful for them to attempt to interact with someone they’d known and loved for so long knowing that their friend didn’t know them from a lamppost? (I have not yet had to deal with this, so I’m just guessing.)
3
@Mary Rose Kent You are right. You don't know what to say. Repeating the same answers, not being recognized and often hearing words from your friend you know they'd never used before are just some of the things we're not prepared for. I cannot imagine wanting any of my friends to see me in decline. Expecting them to subject themselves to such repeated pain and suffering would be selfish on my part.
7
@Glenda, I've watched family & friends with dementia and have cherished those friends who stuck with them through the harder times. It's much much worse if people are left alone - they do feel that - and any interactions you have with the person with dementia will be good for them and easier for you as you understand what they need. Yes, it was a piercing sadness when my aunt no longer recognized her sons when they were young in a photograph, but there were other ways to make her days happy.
3
I was still a kid at the time, but I remember when Happy Rockefeller went public with her breast cancer treatment, and there was a sense of relief that we could talk about cancer now. The problem with Alzheimer's and dementia is that they invite scam artists who practice every form of economic exploitation imaginable. My mother was scammed out of a lot of money years before receiving a diagnosis, and even then, it was some time before I was able to get power of attorney (her lousy lawyer never told me that I had it all along). Even then, part time care (so I could go to work) with trustworthy people cost more than my take-home pay, and I had to deal with her meltdowns and weird behavior the other 16 hours a day, nights and weekends. And this article ironically repeats the biggest lie, that education will somehow save you from Alzheimer's, yet look at the high-profile, educated people the author is writing about. The less we know about a disease, the more we blame the patient. Remember "the cancer personality?" All the same pablum and BS is being uttered about dementia, because we don't know enough about it. Better to just admit ignorance than to make up stories and spout stupid theories about dementia.
56
@Stephanie Wood Exactly. You can't jog or puzzle your way out of it. My mom was / is a fine physical specimen, on no medications, kept her figure after having kids, and developed Alzheimer's anyway. Only now the part of her brain that coordinates walking and eating is apparently going too, such that she has taken to a wheelchair and spits out food.
Gosh, if only you could prevent Alzheimer's by not smoking and eating your vegetables.
10
@Stephanie Wood
Ms. Wood, more years of education are indeed associated with lower dementia risk, and the growing percentage of Americans who finish high school and go to college may be contributing to a lower risk in this and other western countries. (Even as increased longevity and the size of the aging baby boom cohort means that more people will develop it.)
But an association is not the same as a cause or a protection. As you point out, plenty of well-educated people get this disease.
5
"Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion,
Sans teeth, sans eyes, sans taste, sans everything."
As You Like It, Act II, Scene VII
Some seem to have outstanding courage even while progressing to "sans everything".
22
While everything dies eventually "go", we must get Medicare to cover dental, hearing aids and glasses. Call your representatives. Vision and hearing are crucial to cognttive ability and a mouth that is not in pain can drastically improve outlook and behavior.
12
One might wonder if one is not dealing with it. Otherwise it's probably nice to know you are not alone. Simple as that.
9
Living too long is not a good idea. It often brings faltering and declining, which may be worse than death as we can no longer contribute to the world as we once did. When we do die we are not remembered as the active and enjoyable person we once were but as one feeble and pathetic. Once we reach a certain age we should discard all life prolonging medications.
30
My mother tossed all her medications and, ironically, her health improved. But by then, she had gone completely off her rocker, and the years I spent chasing her around and trying to rein in her out-of-control behavior have made me chronically ill. The night she died was the happiest night of my life. For at least one night, I had hope for the future. The whole time she was sick, I was dreading what could happen to both of us, or what she might do to land us in hot water. For many people, dementia isn't just a disease of cognitive decline - it is complete insanity.
30
This sounds too much like Sarah Palin’s bogus death panels, I’ll pass.
1
@Aaron Adams
Some years back I set my breaking point at when I can no longer read with comprehension. If I can’t curl up with a good book, I’m done.
15
I was frightened when my lifetime companion for fifty years received in the USA , a while back , the diagnosis of Alzheimer’s disease and a life expectancy sentence of six years .
The reason for the consultation was some recent memory loss.
This diagnosis was delivered in an abrupt , cruel and sadistic manner by a young neurologist.
Subsequent visits to other physicians even several overseas specialists put the clinical situation in a new perspective and made us doubt the diagnosis and prognosis of the American neurologist .
All of us have to consider that aging will bring changes , often negative, we have to learn to readjust our expectations and adapt to a new life .
Our life , after months of anguish, is now back on a normal track .
What is on my mind is that sometimes a rushed diagnosis by an overzealous physician can cause immense damage .
We used the outcome of the neurological visit “ cum grano salis “ putting it in doubt and using our reasoning process to search other ways to shed new light or to confirm such appalling results.
Hippocrates said a physician should not harm a patient, so true .
26
@Inter nos; You have some excellent points. I've seen dementia -- as awful as it is, and as common -- MISDIAGNOSED.
I know two elderly ladies who developed "signs" of dementia after illnesses and surgery. These symptoms can occur in the elderly after ANESTHESIA, and that should be accounted for. In both cases, their panicked families put them into Assisted Living homes, and out of their real homes -- selling or discarding most of their furnishings and possessions! -- while they were incapacitated.
In both cases...the women RECOVERED in a few months. They had some disability but were NOT displaying clear signs of dementia or memory loss. One had had a heart attack at 89; the other cancer surgery at 74.
In some cases....dementia can be mimicked by symptoms of urinary infection. THIS IS COMMON. It is also blamed for "incontinence". This happened to my aunt; only when I overrode the Assisted Living home personnel and dragged my aunt to a REAL DOCTOR, did she get proper treatment. While she did have dementia, the symptoms greatly reduced once the infection was cured, and so was her incontinence.
Another overlooked cause -- DEAFNESS. Many seniors over 80 have full or partial deafness, but cannot afford costly hearing aids which ARE NOT COVERED by Medicare!!!! A world that is suddenly silent cuts them off from normal human interactions, even TV or music. It can cause behavior that seems abnormal; I have seen this turned around with new hearing aids!
89
@Concerned Citizen
Your analysis is complete .
Once a patient is labeled with an illness, particularly when mental capacities are questioned, it is quite troublesome to walk away from that diagnosis.
Thank you for sharing your thoughts.
16
Thank you for sharing that.
9
Plenty of diseases with no real prevention or treatment, despite what Big Pharma and the medical-industrial complex want you to believe.
Never read anything about a link to education levels, Justice O'Connor and plenty of others should put that notion to rest. If there is a link, it's not education per se, but environmental factors. Ditto for hypertension, Alzheimer's is by definition idiopathic. Hypertension can cause micro-infarcts in the brain which would mimic the symptoms of Alzheimer's or other forms of dementia, but then it's not idiopathic.
In a saner country with a disease affecting almost 6 million Americans, the federal government would devote billions of dollars every year for cutting edge research. Not that every disease is curable, we still have the common cold around.
Instead we get more tax cuts for corporations and those atop the wealth pyramid, and more 100 million dollar planes vexed with problems.
50
Since I have done some medical research on longevity, I have a few comments. There is a significant increase in the incidence of Alzheimer's. Why is this? Since we treat heart disease and cancer more effectively, incidence of Alzheimer's has gone up because this is primarily an aging process in the brain, except in minority of cases of early dementia where genetics is involved. Previously it was called as senile dementia. Since the name was changed to disease money poured in for research. However, what have we accomplished? Many drugs, even those that removed amyloid or that inhibit enzyme cholinesterase have not been effective. Moreover, we do not have good clinical tools to measure subjective improvement. The drugs we use are expensive, associated with side effects and their effectiveness has not been proven.There is really a question whether we can improve an aging process in the neuronal cells which do not regenerate, in spite of billions of dollars spent. Stem cell research and gene manipulation are still in early developmental stages and a breakthrough for a cure in the near future in unlikely. We have to really look at our priorities in research, such as cancer where we are are having quite a success. There are so many ways we can improve the general health of the population and improve longevity. While the research continues, the most humane ways to prevent cognitive decline are to consume a balance diet, engage in regular exercise and ensure mental stimulation.
24
Wait until you get that dementia diagnosis, and see if you feel that treatment is important. By the way, some people get it in their 50s, and other people, like my mother, are vigorous, energetic, social, eat vegetarian, and do lots of reading, so obviously the sedentary lifestyle of reclusive illiterate hermits is not the cause of the disease.
21
@Stephanie Wood
Please note that that I did not say treatment is not important. Having treated many, I very much empathize with you. The point I am trying to make is that after spending billions of dollars there is no end in sight for the Alzheimer's which seems to be a natural aging process in the brain for most people who develop it. We should continue research but not as a priority, because research money is not infinite. I am talking about the curative treatment which is expensive and making them sicker. Of course we have to treat the symptoms of agitation, confusion etc. with medications and be very supportive and respectful to make their life comfortable.
4
@KRS M.D.
You are mistaken: this article clearly states that the incidence of dementia is declining.
How deaths are determined to be directly caused by dementias is something of a mystery, and I wonder how accurate the information is.
It's enough to know that dementia makes one's last years very difficult, and that few people have the wherewithal to pay for caretaking at this level of need, and that hands-on caretakers without relief face exhaustion, isolation and illness themselves.
It is good that people can speak of it publicly, but remains a private terror for many.
Additionally, this also goes hand in hand with the desire of many of us to be sure we will be able to access doctor assisted suicide once we reach dementia, based on decisions we made when it was still possible.
35
@cheryl: sorry but there will never be ANY law that permits you to kill elderly dementia patients without consent AT THE TIME OF DEATH.
You cannot sign away your right to live; you can withdraw consent to assisted suicide up to the last moment, even in Canada or Switzerland!
5
@cheryl - In the states and countries with "death with dignity" laws, it's only available to those with normal cognitive functioning. No matter how sound of mind someone is when signing paperwork requesting physician assisted suicide when the time seems right, once the petitioner has been diagnosed with any kind of dementia, assisted suicide is no longer an option.
1
It is so sad we offer stigma to those having an incurable disease. True, dementia and Alzheimer's can change one's character for the worse and in some cases even pose danger for others. But it is a disease, not the patient's fault. The stigma forces early patients to hide the disease, which could be risky if the person is impaired in one way or another at the job. They should feel supported to be open about the disease and retire on disability, as in Dr. Draine's case. Meanwhile. since we don't know much about the disease, let's not take liberty to say an elderly and vulnerable parent or relative has the disease and should be restrained, adding to discrimination and abuse against the elderly.
6
Disclosure of dementia explains unusual or erratic behavior that may be observed by others. Absent disclosure, people observing this may arrive at the conclusion that the sufferer is just mean and nasty.
Actor Charles Bronson had a horse farm here in Vermont. Late in his life, he was present when an event open to the public was held there. He apparently got extremely upset and agitated over something relatively minor and lashed out at some people present. They arrived at the conclusion that he was a nasty and disagreeable person. Later, it was revealed he was suffering Alzheimers. But I suspect many of those present that day never put two and two together to subsequently realize that dementia may have contributed to his behavior that day.
And another prominent public figure who did disclose his Alzheimer diagnosis was actor and NRA President Charlton Heston.
45
People and society can be so judgemental. I honestly don't understand why any type of ailment, physical or mental, should be 'embarrassing' or stigmatizing. Our bodies and minds are imperfect. We will all encounter a variety of ailments and illnesses throughout our lifetimes. As they say, 'it is what it is'. Why on earth should anyone be judged or looked at unfavorably, because of aparticular ailment that the universe bestowed upon them?
58
@Lisa I think that embarrassment is only part of the issue. I believe it is us seeing mortality up close, in the mirror, everyday. Anything that we can hide allows us to deny it while anything public (potentially stigmatizing) rips that deniability away from us, baring our mortality in public. We all experience some level of our physical being failing. The aches and pains among others, but we rellish our memories and our intellect; when that is going away, it takes what some call a soul away.
23
The weird manifestations of dementia can be embarrassing, just as certain symptoms of digestive illness are embarrassing. Sadly, that's just the way it is. When my mother was harassing people, it was hard for all of us to continue smiling and tolerating it. We did, for the most part, but it was a constant strain. Behind closed doors, we wanted to kill each other.
9
@Lisa
The problem is that we aren't saints. And that we don't recognize what we are seeing as manifestations of disease. And also - we might not have any clue at all about how to respond appropriately.
The types of behavior you might see in early dementias might seem like carelessness, or intentional lying, or lack of care; later, like mean or boorish behavior; and later yet, may seriously violate norms of sexuality or aggression. Examples: My FIL started taking his clothing off at a wedding reception. My mother threw spoons at another woman with dementia to make her go away. Both of them - pre-dementia - would have been horrified at their behavior. Some individuals masturbate in public. It isn't "them" - or it is them stripped of the personality and experience.
We would normally shy away from people exhibiting the behaviors. It's a gut level response for most. When we learn more and develop ways of responding we can mange to see the person.
And as @ Dane says, this is looking into the mirror and seeing a distorted reflection of future selves - one we don't want to see.
7
Going public sounds like a noble and compassionate response.
The reality is much harder.
I watched as progressive dementia made my mother's social status in assisted living decline. It wasn't her family or her caregivers that were disinclined to socialize with her; it was the other residents.
I had read about how facilities discriminate and move residents out of dining rooms or social activities, but I felt like I was watching things in high school again.
126
@Cathy; THAT IS SO TRUE....I had the usual awful high school experiences, and one of the great joys of becoming an adult is GETTING AWAY from this sort of controlling situation with forced intimacy. I figured most of my life that as long as I stayed out of PRISON....I was safe.
I was wrong. At the END OF LIFE -- after decades of independence, freedom, autonomy -- many of us will end up in Assisted Living and nursing homes, including dementia units, where we will lose ALL OF THIS....and you don't need to have Alzheimer's.
Even perfectly sane seniors in nursing care are treated like children, forced into all eating together and annoying "social activities" like bingo -- and YES, I've absolutely seen the "mean girl" thing alive and well in people past 80.....
They often shun the older seniors (!!!) and anyone with memory problems or in wheelchairs. The active seniors congregate together. If one of them becomes sick or demented....they get shunned. It's like they feel having the presence of the very sick or disabled may "rub off" on them!
I've seen elderly ladies in wheelchairs (!!!) -- all of them past age 88 -- in fisticuffs and hair pulling fights. But most of the nastiness surrounds "who eats with whom" -- it is identical to what I remember in SEVENTH GRADE! -- the healthiest most active people snobbishly choose who they eat with, and push any seniors with problems away -- sometimes the prejudices are also class-related.
59
My mother was tossed out of one elder day care within half an hour, another would not even admit her. She was able bodied and didn't need much physical assistance. A nursing home or live-in care was out of the question, we could not afford it, and a nursing home probably would have spent all her money and mine just to drug her into a stupor.
9
This even happens in senior apt complexes. It's like the tattletale atmosphere of Chinese communism. Absolutely suffocating. My uncle keeps working just to escape it, even tho' he is ill and in his late 70s.
8
I'm genuinely surprised at these reports of stigma. My father had dementia, and my mother has Alzheimer's, and I've seen nothing but compassion from relatives, friends, coworkers, and medical professionals. I've been touched at how patient cashiers and servers are with my mom. Many people tell me that they've had a family member with the same problem. I think that I'm in the land of Midwestern Nice helps too.
Mental illness runs in my family, myself included, and that's where I encounter terrible stigma.
I do want to recommend the Alzheimer's Association to anyone needing information or assistance. I go to a caregiver support group, have met with a coach, and called the 24 hour hotline all free. Their staff are well-trained and wonderful.
This disease is horrible and heartbreaking.
56
I agree 100% that all the people I’ve dealt with over the years at the Alzheimer’s Association are caring and supportive.
11
I'm glad for you. I found AARP and the Alzheimer's Assn completely useless. My mother was out of control. Some people with Alzheimer's are "nice," and dignified, as they were in earlier life. My mother was a whack job all her life, so she was insane on steroids as she aged, and that's probably why her diagnosis came late. By then, no one could deal with her, and I'm sure she would have been tossed out of a nursing home, as she was tossed out of day care the same day.
9
@Joyce Here in Canada, the biggest opposition to medical aid in dying came from the Alzheimer's association. They want everybody to experience life to the bitter end and waste money on silly campaigns such as "I'm still here." Alzheimer's is an illness of denial and selfishness, so it's all about me, not about the low-status women who are stuck workers as caregivers.
1
People who work 1-2 jobs will need broader Medicaid and Medicare for family with dementia, Alzheimers and brain disorders. These circumstances require 24/7 care or neglect of elder investigations.
10
What a horrible disease. It takes the very essence of our being from us.
My mom and I were very close until her mind began to drift. She died at almost 91 with that hideous disease. I had to experience the loss of that deep friendship while she lived. It was very, very painful.
Wouldn't you think with the enormous potential profit for an effective drug, by now we would have had one. Life is full of mysteries and occasionally lots of pain.
8
@Curiouser
I am sure all companies , seeing the huge profit are working as hard as they can to find a way to treat this awful disease, but there is nothing in the works that can slow, not even cure this disease. We can show compassion to the families dealing with this diagnosis. Many people have DNRsin place but why can't we add a codicil for assistance in dying while we are in a position to make this decision for ourselves. Even there the government stands in the way for citizens to make this decision for ourselves. Women are forced to have babies because of the government even if it bad for their health by busybodies who would not treat these children or take them into their homes. If you are financially comfortable your loved ones are warehoused, treated to costly medical care even though there is no way they will be able to live a life. But there is enormous money to be made by greedy and corporate owned to keep the long sufferers and families who are able to provide financially. The others just spend down and go into poverty. When was the last time you visited someone in these facilities. Then say what you would want for yourself.
16
@MK: I understand your point and your fears -- they are MY own fears -- but you just can't kill people because they are old or ill WITHOUT CONSENT -- and dementia patients cannot give informed consent.
A PRIOR consent form would be useless, because in all assisted suicides -- yes, even in Canada or Switzerland -- the patient must be competent and give active consent IN THE MOMENT and can withdraw it at any time, right up to the end.
3
@Concerned Citizen And proactive people, can consent and choose medical aid in dying while competent. The competent phase, if you are proactive, would last for years. Most people use avoidance and slip into the middle stages before a diagnosis. In the Netherlands, only 100 out of 45K people a year with Alzheimer's choose medical aid in dying.
I was encouraged by a counsellor to share the fact of my husband's memory loss from a TIA and some related dementia with friends. I was surprised and saddened when one of them stated that she had seen him "driving all over the place," although he is still driving carefully and well and drives only in our town. I felt chastised and criticized and wonder why these reactions continue to happen. Like all caregivers I am responsible and take all measures to ensure the safety of not only my husband but also that of those with whom he comes into contact. Fear of dementia is certainly an issue that needs to be addressed.
10
@Marie; I am sorry your friends hurt your feelings, but dementia patients lose not just memories but the ability to make safe, reliable judgements. I don't know if your husband should be driving or not, but was he evaluated for such by a doctor? or the DMV?
12
@Marie, Please try to understand that if he can only safely drive in your town he should not be driving at all. I grew up in Ohio and until fairly recently spent about a week every other month therre, which is to say I understand how importrant driving can be to feeling OK. But please do not wait until something awful happens to do the driving yourself.
One of the nicest things my father ever did for me happened shortly after he took the car keys from his dad and gave them to my oldest cousin. Daddy told me that if/when it got to the point when he should not be driving I should tell him so and remind him of that conversation. When my mother - normally super rational - told me that she was making it a point to always ride along I knew it was time. (She had macular degeneration and other physical problems that kept her from driving.)
19
@Marie I am a geriatrician. Talk about driving with you husband and then talk together with your physician. A diagnosis of dementia does not necessarily mean his license needs to get taken away as a) it needs to be assessed whether the driving is dangerous at all and b) there are recommendations that can be made regarding how to make driving safer. There are people your doctor or DMV might refer you to who professionally assess driver safety. See link below also. What should be impressed upon him is that driving safely is not only important for him and you but a public safety issue.
https://myaota.aota.org/driver_search/index.aspx
(For readers, many elderly people are aware of their driving deteriorating and they will voluntarily restrict or otherwise modify how they drive to fit their limitations. It's not always about doctors and family fighting to take the keys away from someone. But people only see the extremes in the media when there is an accident.)
6
My mom had Alzheimer's, as did my mother-in-law. I even wrote about our travails in a book, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." My mom was diagnosed with her illness the same time my dog was; that's where the title came from. Like so many other people have said, Alzheimer's is a disease that affects the whole family, psychologically, physically, financially, etc. I wasn't prepared for any of it. My mom was bright, educated, and nice, and Alzheimer's changed her personality, her cognitive skills, etc. You can't override the symptoms. That was a hard thing to accept. It's not as if you can say, "Mom if you try really hard, you'll remember how to add." I'm hoping researchers find a way to make this a disease of the past, so if someone sees a book on Alzheimer's, they'll say, "What was that?"
26
@R Lynn Barnett: if it was just loss of memories....Dementia would still be awful, but not AS awful as it really is.
It is, as you say, a total personality change. I cared for my aunt with increasingly dementia for several years -- from before she was diagnosed until her death. She'd been a sophisticated, classy lady with a job (at a time in the 50s when most women were homemakers!) and a career -- very private and dignified.
It was beyond awful to see her descend in to dementia, and lose all of those qualities....it is NOT just memory loss. It is also a loss of all personal dignity -- a once proud, dignified person who thinks nothing of running around in a diaper or soiling themselves in public -- or who is violent and combative with family or aides.
Also as you say....there is simply nothing you can do but watch, day by day, as the essence of someone's personality and individuality DIES and leaves behind a living husk that bears no resemblance to the soul of that person....but which requires increasingly costly and invasive health care.
36
My husband and I have begun discussing, in very loose and fluid ways, how we might handle it if one or the other develops Altzheimer’s. My mother, her brother, and father had it, and my husband’s mother likely has it. None of them had or have publicly told anyone about it. Their shame was tremendous. We have vowed to trumpet it to the world, and greet it for as long as we can with humor and compassion. We are nearing retirement and have wanted to move closer to our son who lives in NYC, but now we are rethinking that and wondering if being near the friends we have known here for over 25 years would be better. Those kinds of decisions could have tremendous consequences. It now takes an army of 10-14 round-the-clock caregivers to take care of my MIL at home. She has the money to do that, but what about the people who don’t? Will WE have the money to be cared for at home? How do we avoid putting such a burden on our only child?
27
@Frau Greta: 14 ROUND THE CLOCK caretakers? are you serious? that would cost something like $2 million dollars a year. It would be the entire STAFF of a dementia unit or nursing home, dedicated to JUST ONE PERSON.
That is impossible for 99.999% of humanity. Home health aides from reputable agencies -- bonded, licensed, insured -- cost about $25 an hour today (more in big cities) and that works out to roughly $600 a day, or $$4200 a week....$16,800 a month....or $202,000 a year.
That is for ONE health aide (or a couple of them, doing shifts) every day. 10 such aides working round the clock shifts, would run about $2.1 million a year.
ALSO: I have a hard time imagining ANY friend -- even a very good one -- who will care for you with dementia, including diapering and bathing and feeding you. In fact, few adult children will do this care when it reaches the incontinence stage.
29
You'd be surprised how many adult children do it, hire caregivers during the day, go to work so we don't lose our health insurance, then come home to deal with our parents, who might keep us up all night. I used to actually dance when my mother went to sleep, or, as I lost energy, I'd read. But only in little bits, as she could wake and go postal any time of day or night.
15
@Concerned Citizen
Only four or five of those caregivers are paid, and they are on different shifts, not overlapping ones. The rest is a rotating mix of her children and nephews, some of whom are retired and others who are not but have to travel distances to take their turn. So your math doesn’t really match the situation, as the bigger proportion of help is free. But it still costs a lot for care 5 days a week and now they are considering weekend care. One son is close to having to quit his job because he is losing sleep and having to take days off of work to recover. Caring for an elderly person is exhausting, both mentally and physically, but this family made the decision, because they could, to keep her home.
6
My spouse and I watched one parent each die of dementia. It was horrendous for the sufferer and for the family. It's time to rethink the whole assisted suicide legal structure. My father-in-law wanted us to help him die but we could not risk it. He endured over a year of extreme suffering as various systems shut down (although he was in hospice), something he knew would happen and something he wanted to avoid.
Dementia isn't one of those conditions like cancer where the sufferer can remain lucid enough to fulfill the requirements of the existing very stringent laws on medically-assisted death. Yet the suffering can be as severe as from one of those other causes but much more protracted and inexplicable to the sufferer.
104
@Rodrick Wallace: I agree it is awful, but you are correct -- a senior with dementia CANNOT agree to assisted suicide as they are legally incompetent.
Are they better off dead? I don't now. How about horribly crippled children or young adults with incurable conditions? the mentally retarded? do we euthanize them all?
Must I tell you what that "slippery slope" leads to?
9
@Concerned Citizen
That is why a medically assisted suicide should be part of the DNR order should be in place while still competent to make that decision on ones own term. One can always recind this statement but it is made in full mind
27
@Concerned Citizen
Yes, they're better off dead once they pass a certain part of the spectrum.
When the memory is totally kaput, what is an adult? When you can't recognize your family, remember their names, recall the last happy social outing? We are nothing more than the product of our memories.
When it's really advanced, Alzheimer's patients can't feed themselves. They have no control over bowel and bladder, pissing and shitting themselves. At the very end, they're immobile and develop pressure ulcers (bed sores) as well as recurrent pneumonias from the gag reflex not functioning.
Like a helpless infant, but the future doesn't hold the promise of potential and development, rather regression.
Some fates are worse than death, which we all face anyways.
41
America has a great deal of shame related to any brain diseases. Some are transient(anxiety attacks), some are chronic (major depression, PTSD, personality disorders) and some are progressively more destructive ( all types of dementia.) We like to believe that we are logical, rational, and in control. We fear and avoid anything that suggests we might behave 'differently' or lose control of our lives. But like all who live with chronic illness, there is a person who has a disease. And the family needs support and help with caregiving. Turning away doesn't protect anyone from brain diseases.
26
I'm interested in knowing what symptoms led to Jeffrey Draine's diagnosis at 55 while teaching.
4
@Sutter
From the article: "Dr. Draine, a professor of social work at Temple University, had developed puzzling behavior — leaving the front door to their house ajar, neglecting the bills, driving uncertainly.
It took several years to get a diagnosis: first mild cognitive impairment, then early-onset Alzheimer’s disease."
5
@Sutter For ideas about early stages, try reading the book, “Still Alice,” a compassionate novel about a professor diagnosed with early Alzheimer’s with perhaps a bit too rosy an ending.
Google has a site called Ngram. It looks up terms entered then plots how many times those terms have been mentioned in the archives of data colloecte by Google. If you enter the term Alzheimers you get a graph that is zero up untill about 1984. Then it becomes very large very quick.
To me this is proof that Alzheimers is a result of some toxic substance or substances we have been exposed that started in the 80's.
( see: https://books.google.com/ngrams/graph?content=alzheimers&year_start=1970&year_end=2000&corpus=15&smoothing=0&share=&direct_url=t1%3B%2Calzheimers%3B%2Cc0 )
3
My grandmother was I a nursing home in the early 1960s with dementia. My mother and her sisters, my grandmother’s daughters, were both diagnosed with Alzheimer’s in the 1990s. I’m sure in the 60s, Alzheimer’s wasn’t a term used often or at all.
12
@Allan
In part, now many people live much longer, and as they age, are not so likely to die from other causes, so the chance that someone will develop observable Alzheimer's - or another form of dementia - increases greatly. Observable because brain changes precede behavior change, perhaps by years.
Also in older days, older persons might have been kept at home by relatives - pretty invisible to the public - with their deterioration simply attributed to senility - the inevitable effects of aging - rather than to a specific disease.
5
@Allan: people just used different terms back then.
Did you do a word search on the term "SENILE"? that was more commonly used than Alzheimer's 40+ years ago.
6
This article suggests that dementia is inevitable but only a small percentage of people over 70 have it. An unasked question is, what happens to single people with no caregiver and no one to prevent abuse? We need a more available option for assisted dying.
100
@PhillyPerson: full 50% of all people who live to 85 or more have dementia.
That is NOT a "small percentage".
It's a huge and vast problem.
Are you arguing people should not live past 70 or so?
Most dementia occurs past age 80; the gentleman in this article who got it at 55 is a rarity.
I've clocked a LOT of time in the last 10 years in Assisted Living homes, dementia units, nursing homes...with family & friends there. Until you see it up close, you don't grasp the enormity or the problem -- nor the epic cost.
21
@phillyperson surely you are not proposing that single people with dementia should kill themselves because they have no one to care for them? I agree that all people should have the option to choose a dignified death, but we need to be very careful about not pressuring people to do so because they feel unwanted or unvalued by our society.
6
@Patricia Y What do you think single people with dementia and no family, inadequate finances, and no one to take care of them should do?
13
There is a general belief that dementia cannot be prevented. But some research has found links between diet and dementia risk. I think that presenting some of that research to the readership would be a valuable public service.
10
@William There has also been research showing links to particulates in the air, which does not bode well for the health of our nation under the current administration and its EPA rollbacks.
17
@William, you are correct, there is evidence that diet is correlated with the development of dementia. For example: "There appears to be a really tight correlation between Alzheimer’s and per capita meat supply. And, then, studies within countries uncover similar findings, with Alzheimer’s and cognitive decline associated with meaty, sweety, fatty diets, whereas most plant foods are associated with risk reduction." https://nutritionfacts.org/video/how-to-prevent-alzheimers-with-diet/
This is only part of the evidence; there is much more. And there are no doubt other contributing factors. But If I can take any steps to reduce my risks, I want to take them. So I now eat plant based whole foods (no animal products, minimal to no processed foods), and exercise. This lifestyle is generally healthier, and may reduce risk for other diseases as well, such as cardiovascular disease, diabetes, etc.
4
@William: there are some THEORIES, but nothing scientific or proven, that diet MAY have SOME affect on dementia. There is no specific diet to prevent it, and definitely no diet that can cure it or even moderate it.
The article and many posters here talk about the awful STIGMA of dementia....and I assure you, part of the stigma and the shame, are when people read some "article somewhere" and decide your loved one IS TO BLAME for their dementia, because "they ate the wrong foods".
17
Important article. Very helpful in our ongoing efforts to reduce the widely held and harmful stigma in our society about people living with dementia.
I highly recommend watching the inspiring DVD by the late Dr. Richard Taylor who lived courageously with dementia and was a leading national advocate for living as fully as possible with the disease despite cognitive disabilities. The name of his DVD is Live Outside the Stigma: Confronting the Myths and Stigmas of Alzheimer's Disease and Other Related Dementias from the Inside Out (2011). Produced by Julius Keya, Brilliant Image Productions.
Your article Paula is also very helpful in our efforts to avoid using stigmatizing messages about people living with dementia during fundraising campaigns for cure of Alzheimer's disease. A recent concerning example is the fundraising campaign in Canada called Curealznow.ca where a person with dementia is shown on his death bed in a way that is a gross misrepresentation and stigmatizing portrayal of this population. Very irresponsible and hurtful to many people living well with dementia and advocates who watched it.
HealthNewsReview, a leading U.S. national watchdog organization dedicated to balanced health-related journalism recently (September 4, 2018) released a podcast called The Problematic promise of a "cure" for Alzheimer's disease. It describes the harmful effects of stigmatizing messages that are often part of fundraising campaigns for cure of the disease. Time for change.
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@Eilon Caspi PhD
I'm going to disagree here. I was the sole caregiver to my mother-in-law who had Alzheimer's and her last few years and months were a miserable existence. Now my husband who's only 66 has developed the disease. Although he can still function and enjoy his life, he will inevitably decline and face a future like his mother's -- lying in a bed, diapered, mute, motionless, and oblivious to everything.
Until there's a cure, the kindest thing we could do isn't to sugar coat the reality, but to give people with Alzheimer's the same right to assisted suicide that people with other diseases have in several US states.
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@Noodles
Completely agree. My mother dreaded the idea of getting Alzheimer’s - all of her mother’s sisters and a brothers died of it. My mother has been in a nursing home for the last 4-years. It was to dangerous to let her live at home and she needed more care than my family could give or privately afford. She is now 88 and has no quality of life. My mother is no longer the wonderful person she once was and heaven help the patient in what is typically an understaffed nursing home. Not a judgement to the workers who work in a NH - they do work that the majority of people absolutely would not consider.
I agree that people with Alzheimer’s should have the right to assisted suicide. We treat suffering animals better than we do humans w/this disease. It would break my heart to legally assist my mother in a suicide had those been her wishes, but at least she would be at peace.
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My mother was still walking 4 days before she died. She led me on a wild goose chase and kept me busy running after her right up until the end.
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Preventing the vascular, traumatic and toxic causes of dementia can prevent or delay the onset of dementia. No boxing, football, smoking, excess drinking, treating high blood pressure, diabetes, obesity and exercising your body and brain can all help. Any drug treatment, to be effective, will probably have to be given to people before they develop symptoms.
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@turbot My grandmother never smoked, drank only a little on special occasions, didn't suffer from either high blood pressure, diabetes or weight gain (until she was quite elderly) and was stricken with dementia. My mom, on the other hand, smoked, drank fairly often, also did not suffer from anything other than COPD and never contracted it. You are far too close to victim blaming for me. You are also assuming a causation that may very well not be there at all.
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@Jennifer Living pas the age of 85 is the biggest risk factor associated with the development of AD. My 93 year old mother never smoked, drank, was overweight or suffered from a single chronic disease. She exercised for her entire life, but at the age of 89, the classic symptoms of dementia began to become obvious to us.
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My mother did none of the things you mentioned, but died from Alzheimer’s.
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Perhaps disclosure by famous people will nudge doctors to be more honest and forthcoming with family members who are assisting elders who are experiencing cognitive decline.
My mother died of dementia (we do not know if it was Alzheimer's as we did not have an autopsy done). But for the years before we finally got a new primary care physician for her, her own doctor and even a neurologist waved off our concerns. Staff at a rehab place following surgery refused to give us any details about cognitive tests they'd done on our mother, citing HIPAA.
We all knew what was happening, but no medical people would fess up until her primary care doctor retired and the new doctor saw her. The only person until then who bluntly pointed out what was happening with my mother was her hairdresser, who'd seen it with her own mom.
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@weary1: my sisters in law just put my MIL into a dementia nursing home....after 2.5 years of caring for her themselves. They INSISTED at the outset that she either did not have dementia or that they "did want to know" if it was Alzheimers or similar -- because they would "always care for mom themselves in their own homes" (they traded her back & forth every few days).
Well...they worked until her care become more onerous and her dementia worse, and she forgot stuff like her HUSBAND (who whom she'd been married 62 years!) and claimed she didn't know she'd been married.
But the final straw was -- and always is -- incontinence. No matter how much you love your mom.... you do not want to have to DIAPER HER, or clean her up after daily toileting accidents.
I also agree that doctors are often very vague about dementia, and won't call it by name until it is very advanced.
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@Concerned Citizen: sorry, that is "they DID NOT want to know" if she had Alzheimers, becuse it was too depressing to them.
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Maybe all the years of cleaning up dog and cat crap prepared me for cleaning up my mother's. It was her meltdowns that really wore me out. And what fun lifting her into a claw foot tub for a shower she did not want to take, and she fought me the whole time. Oh joy. Changing diapers was the least of my problems. Chasing her all over town in hot and cold weather, having her drag me into intersections, having to carry her home, her habit of making scenes with the neighbors...I could go on...
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Well. This could be the case of life immitating art as in tv.
With all day time shows where folks sit in the couch and tell all kinds of things - very personal or get into verbal or sometimes physical fights with family or friends.
That's called entertainment.
This one is educational and instructive.
I am pushing 70 - there has been no case of dementia in my immediate family - except a long related uncle.
And I am by myself.
So, I could be facing such an issue. If nothing else. I learn about many resources including support through Social Security etc.
This is a disease unlike any other where you appear healthy physically but there is nothing there there.
God works in mysterious ways.
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@Neil: Social Security has nothing in it for dementia. Sorry.
Neither SS nor Medicare provides for the long term care in a facility that dementia usually requires. That's because the cost is insanely high -- a good dementia care nursing facility runs from $70,000 a year to $120,000 a year and UP.
Very few people have that kind of money and even Long Term Care policies balk at paying that year to year. Some dementia patients can live 10 years or more, unable to do the most basic self care.
So this is how it works: you end up in a nursing home or dementia unit of Assisted Living....and exhaust ALL of your funds. Then you go on Medicaid. In most cases, Medicaid won't pay for a nice private suite in a "chandelier" facility, so you go to a 3rd rate nursing home and a "semi private" room with 1-2 roommates and a shared bathroom.
If you have no family...by that time, all your possessions and valuables have been sold or discarded, and this nursing home is what you have for the remainder of your life -- probably drugged -- probably in a wheelchair -- most of your days will be spent sitting in front of a droning TV, punctuated by mealtimes of wretched steam table food. Nobody will visit, because it is too depressing.
I am very, very sorry to have to tell you this. It's my worst nightmare and I've seen it happen to people that I love.
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You are talking about single people in nursing homes - ironically, a lot of the single people there have often exhausted themselves and their own funds caring for their own parents. We could not afford a nursing home for Mom. We would have lost everything we had. As it is, we lost a large chunk of it (and what was left, to inheritance and estate taxes, and on a home that was without any value). We were still luckier than most people. It could have been worse. It will probably be much worse for me than it was for my mother, who was able to die in her own bed.
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@Stephanie Wood - My husband had Parkinson's and Parkinson's related dementia. I cared for him at home longer than I should have tried to. I bathed and dressed him, toileted and diapered him, administered injections and IVs, catheterized him, and a whole long list of other medical duties. I told myself I was capable of performing every one of those tasks. It took me two years to figure out that no one could do them 24/7. He rarely slept, so neither did I.
When I finally gave up and put him in a nursing home, I ended up paying out of pocket for it past the time his half of our savings was gone. Eventually Medicaid accepted him. And then when he died, my red state immediately slapped a lien on my house for every penny Medicaid had spent - which turned out to be more than my house was worth at that time.
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