Since "Stalked by the Fear That Dementia Is Stalking You" originally posted in February 2020, there have been many advances in the diagnosis and treatment of Alzheimer’s disease. For example, PrecivityAD™, a blood test that can be ordered by physicians in 49 states, uses as little as one teaspoon of blood to accurately predict whether someone has amyloid plaques in the brain. Another, Amprion’s SYNTap biomarker test offers accurate and reliable detection of aggregated α-synuclein protein, another hallmark in various brain diseases.
An Alzheimer’s diagnosis is understandably daunting but for many, there is great value in seeking out diagnosis. A negative test may rule out Alzheimer’s, allowing patients to pursue a diagnosis for symptoms that may be treatable. A positive test gives people time to make important life decisions before the disease progresses and may offer the opportunity to participate in a clinical trial.
The nearly 120 Alzheimer’s drugs under development target a wide range of age-related pathways, including chronic inflammation, vascular disease, and loss of synapses that contribute to the disease. Because Alzheimer’s is so complex, we believe success is likely to come from the kind of combination therapies and precision medicine that have been effective in treating cancer.
The Alzheimer’s Drug Development Foundation (ADDF) is optimistic about the future of Alzheimer’s treatment and so is Bill Gates, who recently shared his optimism in GatesNotes.
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Those of us who are concerned about developing dementia can turn this worry in a positive direction by volunteering to take part in an Alzheimer's research study. Many studies are taking place all over the country. Some require healthy volunteers as well as those with symptoms. Sooner or later, one of those studies will show how to delay or even prevent Alzheimer's. It's a tough problem to solve, but even if the research just eventually benefits our children and grandchildren, we can contribute by volunteering now. Go to ClinicalTrials.gov to see where volunteers are needed.
I, too, am concerned about mental decline. I am 77 and have no relatives known to have dementia of any sort. Yet I know that I forget more past events than my wife of 42 years or long term friends. It concerns me greatly, yet I do not plan to have any testing done until and unless my situation worsens.
I did have a serious head injury at the age of 16 in a car accident, so I do not know whether that may have any effect on my long term mental faculties.
I try not to obsess on this possibility, but it seems to loom in front of me a goodly portion of the time.
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Yes before our de facto criminal health care industry tells you to take tons of tests that are of dubious value to see if you suffer from this make sure they are foolproof or close to it.
PSA tests, oxycontin pushing etc. and the latest the aspirin rip off to stave off strokes are just a few scams.
Another example are flu shots, notorious less success rates.
A miracle? Covid vaccines proving that are overwhelming effective with minimal side effects.
Jane Brody where are you to sort out the difference?
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@Paul I'm not Jane Brody but I can help sort out the differences. Changes in recommendations for PSA and aspirin are the beneficial results of the accumulation of additional evidence on whether or not they work to prevent morbidity and mortality from prostate cancer, heart disease, and stroke, and for whom they are or are not effective. This is how the science of medicine advances. "Scam" is not an appropriate characterization.
Oxycontin "pushing" is in a different category because the allegation is that Purdue pharma lied about known dangers of the drug to increase sales. "Scam" may be an appropriate description, or "criminal negligence" or worse.
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@Jennifer Thank you for your reply. I respectfully disagree. Early on they started to get evidence that PSA tests and baby aspirin theory were basically useless but they pushed it for many yrs to make money for big phrama and big blood test companies among a host of others.
Countless people suffered the bad side effects of both. I know I know, many of my friends suffered but I waited and was not scammed.
You are basically using the guineau pig defense which was not the case imo. Anyway it still would have been wrong. There was study after study that the PSA test did more harm than good but continued to use it.
The only difference with Oxycontin was the degree of de facto or real criminality. The countless needless deaths were evident.
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It's not when you forget where you put your keys it's when you forget what keys do.
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The overwhelming conclusion in the comments here that you’re better of dead than with an Alzheimer’s diagnosis is self-fulfilling. Avoiding treatment and the problem is not helping matters. Why treat a disease like some kind of moral failing?
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@Christine Finn There is no effective treatment as yet, so the choice is knowing what might be coming or choosing not to know. Once early detection can ead to a disease-modifying treatment, then more people will want to know.
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This was a gift of an article. I watched my mother decline quickly from Lewy Body Dementia. I spent the first year after her death pondering (obsessing about?) the same questions the author put into this article. Knowing others face the same queries, and the optimistic alternative to live in the moment and control what seems reasonable - -diet, exercise, social interactions, mental stimulation - -is a gentle and timely reminder that being present in one's daily life is indeed the gift of life. Thank you.
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The reality is that by the time the dementia has affected your quality of life, you are often unable to seek out legal methods of assisted suicide because you have dementia and cannot give appropriate consent. Kind of a Catch 22 isn’t it?
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From my experience with my mother, Alzheimer’s. comes slowly and the person is recognizing some signs. I had talks with her about being tested long before she was incapable.
Many medications given to Alzheimer's patients ,whether it is for combativeness ,anxiety, sleep issues or other behavior issues ,affect cognition and alertnes. A caretaker has to weigh the pros and cons of these medications before they commit their dear ones to these medications.
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As a person who lost a mother, and a brother with this disease. And as a person that has personal experience with alcohol addiction (sober 9 years now) and sleep apnea. I would like to add that stopping use of all alcohol, and more importantly getting a proper nights sleep are vital in staving off this disease.
Sleep deprivation (apnea) is often not even known to the person it affects. Get a sleep test. Go to sleep and wake at a regular time, sleeping for at least 8 hours. Talk to your doctor. There are many watches available that will monitor you while you sleep. The watch can help a person to become aware to self track your sleep pattern and night oxygen levels.
Talk to your doctor even if you do not think you have apnea ! Lastly proper diet read about and eat what is healthy for the mind. Lastly Be AWARE !!
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instead of worrying about something that has not happened ( aka anxiety) its best to enjoy this day, than plan and visualize live fully, not in fear.
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Eye-opening article, if a bit disturbing, but definitely explores the pros and cons of testing as well as being vigilant about depression, boosting intellectual and social engagement, and the importance of exercise. Re: testing, do not go gently into a 3-hr cognitive impairment test without checking the credentials of the person administering it; “neuropsychologist” does not mean the person is adept at communicating findings with older people, even those with multiple college degrees. Re: intellectual engagement, I love this quote: “I am either ripe and rotting or green and growing.” This was delivered by one of my very good friends (she’s 64, works as a consultant to nonprofits, and hikes major mountains on a regular basis) when she spoke at a lovely library event here honoring its female founder, Julia Dorr. Dorr was a visionary who wrote novels, poetry and nonfiction into her old age, and earned her Bachelor’s from Middlebury College when she was 85. Gives new meaning to “use it or lose it.”
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I worry about this every day...
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Thank you for using the term "allele" correctly. I rarely see that done in popular media, yet the distinction is very important.
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Can someone with knowledge discuss apoe4/4? According to graphs AD seems like almost a certainty by age 75 for homozygous e4. All of the discussion seems to be focused on having 1 copy of the gene, which is much less risky.
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We have to accept the concept that we are mortals .
There should be more humane and comprehensive legislation that allows a dignified exit, when one is struck by a terminal illness or any kind of dementia .
I don’t want to end up as a “ wrapper “ being fed artificially, with catheters, sedatives etc just to keep nursing homes going , when I am no longer a human being .
Medical ethics has to change and face the reality that these patients are no longer patients , but just “ wrappers “ where life has escaped but vital signs are being forcefully kept working , to keep the big industry of nursing homes running .
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@Inter nos
Where’s the money in that?
We can prepare, legally and financially, for VSED, voluntarily stopping eating and drinking (which is perfectly legal). Have a clear, specific Living Will and Health Care Proxy, recruit family and/or friends who will assist and who will hire temporary nursing staff to assist, and make sure your doctor will be supportive when the time comes. There’s a lot of info out there, such as at Phyllis Schacter’s website.
The only problem is that we need to pay close attention and exit while we still have our mental faculties, because if we wait until we are fully demented it’ll be too late to effectuate our wishes.
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Increasingly, many jurisdictions allow for a doctor to provide appropriate drugs for a dignified exit, under strict rules. However, the choice of an assisted suicide is only available to those who a cognitively fully functional at that time, not by way of advanced directive. Thus, those with diagnosed dementia don't get that choice. They are condemned to suffer to the end.
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@sissifus, The first step is a will that clearly states what happens and when it happens.
I encourage you, and all those concerned about the healthcare system prolonging one’s life against one’s wishes, to look for your state’s version of the MOLST form used in NY. MOLST is an acronym for Medical Orders for Life Sustaining Treatment. Some states use a POLST, Physician’s Orders for Life Sustaining Treatment. This document is printed on heavy gauge hot pink paper, and is signed by you ( or your health care proxy)and your physician.
Www.health.ny.gov (search MOLST)
“The MOLST form is one way of documenting a patient's treatment preferences concerning life-sustaining treatment – providers may choose to use other forms. However, under State law, the MOLST form is the only authorized form in New York State for documenting both nonhospital DNR and DNI orders. In addition, the form is beneficial to patients and providers as it provides specific medical orders and is recognized and used in a variety of health care settings.”
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Medications are an important and reversible cause of cognitive decline. Most anti anxiety medications (called benzodiazepines) and many over the counter sleep and allergy medications do this. So do many bladder medications and bowel relaxants. Talk to your doctor and make sure they know everything you take.
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The ignorance is high in these comments. Let’s forget about the Apoe gene. It’s not highly penetrant .
The genes for FTD and Early Onset ALZ are highly penetrant and likely to strike in the prime of life. Testing in these situations can have many benefits -
1) Family planning if you haven’t had kids yet (or want more)
2) eligibility for genetic based clinical trials
3) possibility of good news if you don’t have it
4) the realization that knowing you have the gene is just as stressful as knowing you are at risk of the gene.
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What’s the point of “knowing” when there’re absolutely no treatment?Research indicates a healthy lifestyle may be helpful - it’s called Type III diabetes for a reason.
Yeah I worry but it motivates me to think about what I’m eating and exercise more. All we can do.
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Genetic testing isn’t particularly helpful—I’ve seen people hysterical because they have “the gene,” and yet all that means is that a tiny risk is a little higher. Big deal. Exercise your body and mind, eat well, get rest, and be sure to make a living will like the rest of us. And live your life.
What I do find helpful during those worrying “senior moments” (that I’ve had all my life) is to remember that dementia etc. isn’t forgetting where you parked your car or left your car keys. It’s forgetting that you HAVE a car.
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Lots of dementia in my family, on both sides, including my happy-go-lucky, sociable mother. It is a horror and is my biggest fear. Sleep disruption and insomnia is linked to dementia and I've never ever been able to sleep more than 6 hours, have tried everything and nothings works, so I feel doomed. Not very helpful when trying to get back to sleep at
4 AM!
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If you have cataracts, get the surgery. If you have hearing loss, get a good pair of sophisticated hearing aids. Those two things together will give you a spike in cognitive intake that will last for years. Then think about testing to see where you fall in terms of baseline.
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@Mark Holthaus
Very good advice.
While "stressing" your brain by doing complex puzzles and playing music is good exercise, the constant, incremental stress of straining to hear or see clearly is *not* good for your health, in part due to the rise in cortisol. A puzzle may be really hard, but it is a challenge you choose. You can abandon it if it is too much. Spending each day asking people to speak up is just like water torture. Damage is almost certain to ensue.
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While the whole program might not be for everyone (the fasting, the ketosis)-- or even necessary for everyone-- I find Dr. Dale Bredesen's lab targets an easy way to monitor my dementia risk-- as well as risk for other degenerative neurological conditions. I don't know that he has a huge amount of clinical data to validate his hypotheses just yet, but hes6 certainly given it alot of thought and work. In addition maybe to leaning as much as possible into a sort of Blue Zones lifestyle, I am comforted by having this as a kind of guide lost or grade card.
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I would never ever get a "dementia" test. I am 72 and actively practicing law with a so far sound mind. I really don't care to know what will happen twenty years from now. I don't take preventative drugs anyway. My drug of choice is an alcohol-free plant-based diet, exercise, sleep and an absorbing profession. I do not care to support the stupid pharmaceutical industry. Dementia is almost preventable except for the 90% of overweight, unhealthy junk food eaters -- oops that's almost everyone. Oh well that's their problem, and I doubt they would do anything different if they sort of had an idea.
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Well, at least I remembered this was an old article ... that's something!
Geez, NYT, seeing a lot of 'reruns' lately.
At least might flag with a caption or tag about same. As long as comments are open, though, it guess has merit in that can read newer replies and perhaps, new perspectives.
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Jeez, if a hurricane is coming, would you stand dumbly at the window until the house blows down? When is head-in-the-sand EVER a good strategy? We have a dark family history with dementia. For us, the neurological workup is liberating: keeps us from wasting precious time, allows us to set priorities, appreciate what we have right now, and make reasonable plans for the future. Please don't let your fear rob your power!
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If there's really nothing you can do about it, what's the point of all this testing and stressing out?
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@Sojourner Truth
Well, if you are the only one in your family, then sure, why worry about it. But if someone in your family will end up being your caregiver, then I think you should research the toll caring for someone with dementia takes on the caregiver.
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My mother died at 95 as a result of vascular dementia and cancer. Her vascular dementia was, in part, caused by high blood pressure she did not treat properly and elevated cholesterol. My father, who died at 84 from leukemia, had no signs of dementia of any form.
Do I worry? Yes.
But my cholesterol and blood pressure are low. I exercise and keep involved socially, which my mother did not. Do I worry some days when I can't find the word or immediately put my hands on my keys? Sure I do. But I'm now 60, so these things are bound to happen.
But I will not go gently into that good night. I have a health-care power of attorney which is very clear. And I know what to look for having been the medical and legal power of attorney for mom for the last 7 years of her life. Be smart, but I don't want a test to tell me anything.
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My mother died at 85 - having spent the last five years of her life - comfortably - in a nursing home -
On one occasion - I called my sister to tell her my wife and I were planning to visit my mom over the coming weekend -
My sister said she had just visited last weekend and our mom would be delighted for another visit -
Sitting with my mother - I casually mentioned that my sister - her daughter - had told me about her recent visit -
My mother looked confused - while insisting she hadn't seen my sister in almost six months -
I let it slide and went on to other topics - mentioning that I had recently seen the movie "All Bout Eve" on TCM -
"OH - What a great movie! - With Bette Davis, Anne Baxter, George Sanders, Marilyn Monroe, Celeste Holm, Hugh Marlow -- one of my favorites!" -
"All About Eve" - the most awarded film of all time - is also one of my top favorites -- but I had to look up some of those names on Google right now to fill the blanks in my memory -
My mother did not have Alzheimer's - so when I can't think of a word - or momentarily forget the name of that famous actor in an old movie - or walk into a room and can't remember why I went in there - I chalk it up to a bit of loss of memory cells -
And - almost always - after a few minutes that word - the actor's name - or the reason I'm in the room - reruns a flash of light -
So now --
Without looking it up - who can name the cast of the movie "The Ten Commandments" -- ?
I'll start - Charlton Heston ...
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We have dementia in our family, and this read like a recently-typical interaction. In our experience, long-term memories (like the cast of a favorite old movie) are often the last to go, while short-term memories (such as the names of those who visited me last week) often fade as fast as they are formed.
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@Howard G - My mother -who died at 99 in 2018 couldn't remember if she had had lunch but could tell you everything that happened in 1925-
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Dementia impacts short term memories. My mother can remember things from her childhood vividly and can describe events with precision, but can’t remember if she ate lunch or the name of the nurse who helps her every day. It’s a fact that long held memories are the last to go. I see my mother multiple times a week but she thinks it’s months between visits. I think time seems to move very quickly for patients with dementia.
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Be informed and less worried Subscribe (FREE!) to Brain & Life magazine. Covering so many possible neurological diseases, there is always useful information.
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After dementia took my mom, I spent years not doing things 'in case I get dementia.' I didn't get a dog. I didn't take a job that would have moved me away from my home. And so on. When my neighbor, a neuro nurse found out, she took me to be tested and it turned out my odds were about the same as anyone else!
The time I wasted being afraid shocks me. So now I focus on the upside of dementia - the happy childhood my mom finally got to have. That she could still play Chopin on a piano even when she didn't know who her kids were.
Like the author says, it's better for me to not know and to take steps to be prepared for the unknown.
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Since there is no cure for Alzheimers just as there is no cure for death, why undertake a long course of doctors' visits, tests, etc.? And every moment of worry we experience about our future takes away from living in the present to the fullest possible extent.
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@Rebecca Hogan
And while we're at it, add glaucoma to the list. No cure, yet people undergo endless questionable meds, procedures, etc. Especially if elderly.
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@badman
Glaucoma can't be "cured." But it can be successfully treated in many cases and the progress of the disease slowed. Sure beats going blind prematurely.
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"Having baseline results is 'very helpful'"
It can be helpful for diagnosis and prognosis, but it's not much help at all in terms of alleviating symptoms or preventing further decline. Having been through this with a family member, it seems to me in retrospect that most of his many doctor's visits and assessments were completely pointless. Absent some major medical breakthroughs, I suspect that most dementia patients and their families would be far better served by far fewer doctor's visits and far more access to social workers who could help them access appropriate help with their escalating challenges around day-to-day living.
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All these ideas about preventing dementia and Alzheimers with diet , excercise and mental puzzles- My father had Alzheimers for 18 years- my aunt dementia for 7 and my mother 8 years. We had a fish and vegetable based Mediterranean diet and the three of them were competitive Scrabble players and New York Times crossword puzzle obsessives. My aunt and father were bookkeepers and accountants for their professions. They lived respectively until 80- my father- 104-aunt and 99- my mother. Their parents died in the mid 1950s of heart disease in their 60s and early 70s. I blame high blood pressure and heart medications for keeping them alive well past their due. I know what I will stop taking if and when I start to show signs. And I also know what I will take to prevent my son from having to deal with this yet again.
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@Jeanne De Pasquale Perez - Oh by they way always an excellent speller- won the award in 5th grade in 1965- had to google spellings of Mediterranean and Alzheimer's- what does that mean?
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This could just mean your processor is full, like a computer, or you have so much going on in your head at one time you can’t recall everything in an instant.
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@KeninDFW - I like to say my rollodex is full- I assume anyone reading this will know what that is. I lived for a time on three places- one at my childhood home as one of my mother's caregivers. I would run into someone at a store for instance and they would be talking to me like they knew me- which they did- and I would think who is this? I knew them once but my rollodex was now full with new contacts.
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My wife and my parents died from Alzheimer’s. My dad was “lucky”. Cancer got him before dementia fully set in. My mom died from Alzheimer’s. My wife’s dad also, her mom suffered for 21 years. 21 is not a misprint. Her mom’s siblings are progressing through various stages.
Do we want to get tested? Absolutely not. What would we do with that knowledge? We are only children, no living offspring and preparing ourselves for what we view as inevitable. Let’s be honest - science isn’t close. It seems like a giant guessing game, throwing things against a wall to see if something sticks. Medication isn’t measured if it’s effective, only if it *might* slow down progress. Then there the latest FDA approved medication debacle.
Are we afraid? I would say we are both realistic and guaranteeing each other we won’t let 21 years happen to us, whatever that means.
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@ArtM - My father had Alzheimer's for 18 years- so no that a misprint- and that was only when it was diagnosed- who knows how long he had it before he died at 80-
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@Jeanne De Pasquale Perez
It is not a membership anyone should want to join. Sorry for your loss.
I have known more than one person with Alzheimer's who spent her days waiting and hoping for her parents to come and take her home. Are my parents here yet to take me home?
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@Pecan In his late 80's and having dementia, my father did ask about his parents like that. It was a kindness to get him an Rx for anti-anxiety meds. It's horrible to let someone worry needlessly like that.
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@Pecan - My Dad, 96 with alcoholic dementia, has often talked about needing to get home to his parents. They will be worrying. The movie "What They Had" addressed this aspect of dementia, and much more, very well. Which has me realizing that if one is now living as a child, it makes no sense that one would have grown children! Dad does not know any of us now, and reacts testily, or laughingly, if anyone suggests that he has children. He does become energized when my brother plays music from the 1940's on his phone. They have wonderful visits, communicating entirely through music.
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For a lower-stress screening, track the time it takes to complete each Mini Crossword, and make note of any troubling weekly trends.
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I have lost 3 cousins on my father's side to various forms of dementia in the past few years and a dear age mate cousin is experiencing the first stages of it now.
My good memory was always an asset( though kind of not as helpful in the instant information age).
I intellectually know that no one is immune from certain memory issues as they age.
But it still makes me anxious. Last week while watching Jeopardy, I couldn't think.of the capitol of Finland, a fact I've known all my life, yet I can recall the 1955 Brooklyn Dodgers lineup on demand or name all the members of the Temptations in their various incarnations.
I've had various memory tests and been assured that I'm ok. I'm less active than I was prior to having covid(caught it in April 2020, not the worst case, but with some long haul respiratory issues)
I am trying to be as active as possible, I play Scrabble and trivia games and always put my glasses, keys and phone in specific places.
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It seems like the same diet (i.e. low fat, fish & foul, fruits & vegetables, nuts, whole grains...) is best for practically every medical condition: diabetes, hypertension, Alzheimers, heart health). And exercise. And lots of water. And sleep. It's almost as if the parts of our bodies talked to each other and came to a consensus!
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@Patty Not a doctor or dietitian here, but the common assumption that a low-fat diet is needed to retain physical as well as mental health could be seriously misleading.
Obviously, too much of anything...sugar, fat, alcohol, salt, even gluten, etc., can ruin your heatth.
But following a diet of low fat without knowing how much is too low much can be very dangerous for one simple reason...the body needs fat in order to survive optimally, and even saturated fat is part of that need.
Very vew people know that the brain is the most fatty organ in the body consisting of 60% fat.
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Hearing loss, eh?
I've watched people with significant hearing loss retreat from society and into themselves.
I pretty much stopped watching movies long ago because I couldn't understand the dialogue which might often be accompanied by ambient noises and music on the soundtrack.
Characters mumble anyway.
I've determined that hearing loss has a huge negative impact on social interaction and so, on one's mental health as well.
Politicians don't care. They do nothing to help hearing impaired, especially seniors.
Maybe if all rich people also were hearing impaired, congress, eager to help their donors, would buy them top-rated hearing aids and then, not to be accused of discrimination, poor seniors like me could get that benefit too.
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@Roger: try the closed captioning feature while watching movies. Even my 33-year old, healthy, step-daughter uses it, because of exactly what you describe: the lack of noise abatement in the home, the ambient noise, the mumbling/whispering emoting of the actors, the music, etc. I can see well enough still and can read quickly…but with videos and streaming, at least you can always rewind even if seeing and reading quickly are problematic lol. Good luck! I hope you can restore movie-watching to your life.
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I have "normal hearing loss" and use captions now. The captions for the free Inspector Morse episodes on youtube are totally inaccurate, hilarious, and sometimes even obscene. I didn't think a murder mystery could make me scream with laughter.
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Roger, you might try using the “closed caption” setting on your television. It may improve the way you “hear” TV. If you read what they are saying instead of struggling to hear, it may be much more interesting.
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My mother died 17 years ago due to vascular dementia. Vascular dementia consists of multiple mini strokes affecting cognitive and physical functioning. My mother's dementia progressed rapidly from age 65 resulting in her death at 70 with hospice care in a long term care facility. She and my father had advanced directives drawn up years earlier and thus their decisions were followed. They physician at the hospital recommended that I, at the time 50 years old, be tested for CADISIL a test that can identify an inherited form of cerebral vascular disease. I did not pursue it. Why would I want to know? The limitations and preoccupations that would arise are hardly worth it. I'll die when God decides. And in the meantime I have advanced directives which my son still hasn't signed. Death may be hard to accept for some but doesn't have to be. It would be far more devastating to me to live with dementia.
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I understand this fear, I share it since my Mom and her sister both have some kind of dementia though I don't think they have a specific diagnosis. I also have diabetes, which neither of them do.
I'm eating more vegetables and trying to control my blood sugar, though it's been more difficult since I had covid--my diet has to be near keto to work. I'm also working on learning Japanese since language learning seems to be protective and has no bad side effects. I can and should also work on more exercise too.
I am terrible at socializing and have no friends, so that's not an easy fix for me. We all have unmodifiable factors though; guess that's mine.
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@Jennie Jennie, I am terrible at socializing also. But I like to take a range of classes (in person junior college classes are especially fun - it's inexpensive and the interaction with the other students is very rich). Mix a little art, a little music, a little language, math, English. The fun of learning together distracts me from (!Yikes!) face-to-face conversation. Plus, a book called "The Imperfectionist" is great. He urges us to lower the bar. For him, approaching a human being and speaking words counts as a "win". We are ALL incompatible with every one else ultimately, so we are ALL in good company in social awkwardness, right?
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My parent's gerontologist said that most (not all!) people who make into their 80s experience some form of minor but noticeable cognitive decline. Slower processing and/or judgement errors. He's been a Dr since the 1970s and has seen it all. It is an unpopular thing to say so you will never see that published in the popular media like the nytimes, but it is the truth.
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@K Henderson I turned 80 yesterday. I long ago crossed the threshold of withholding what I knew to be the truth because I feared offending listeners. Good for you! What I've noticed is ours is a world of and for the young, so most of what I say is ignored or dismissed out of hand anyway. Plus, being old, I don't care if anyone listens. I talk and write to keep my mind active and hopefully sharp. Right now, I'm reading writing books. If you notice my writing improving, please let me know. Thanks, in advance!
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@Roger My Dad lived to be 90 and his mind and memory was sharp until the day he died. He worked into his late 80's. He was an excellent driver. He was very knowledgeable on the subjects of music and art. He also enjoyed current events. My Mom, at 85, has dementia. The first signs appeared at 82. Looking back over the decades there were certain peculiar things in her behavior that I wonder now might have been a harbinger of the dementia. I wonder if the memory loss could be a later stage symptom of the disease. I think there's a lot they don't understand about it.
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My mother was crazy all her life, so her dementia wasn't diagnosed until she had wreaked a lot of havoc and gone through tons of money (her lawyer, and her doctors, by the way, were completely useless). She was a bit like Giuliani, who obviously has it, and kept me running until a few days before she died, aged 82.
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It seems to me that we all, all of us, might as well plan for a dementia diagnosis. Once people hit advanced old age, the likelihood of dementia goes way up (for example, in 2002, the prevalence of dementia among individuals aged 71 and older was 13.9%, but goes up to 37.4% of those aged 90 and older.)
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I'm surprised that the connection between disturbed sleep/sleep deprivation and Alzheimer's risk is not even mentioned in this article. I consider that a serious omission. Here's that discussion on the NIH website: https://www.nih.gov/news-events/nih-research-matters/sleep-deprivation-increases-alzheimers-protein#:~:text=It%E2%80%99s%20also%20important%20to%20note%20that%20the%20link,human%20brain%20after%20one%20night%20of%20sleep%20deprivation.
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I'm doomed.
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Final Exit Network (finalexitnetwork.org) supports people exploring their end-of-life options. Among the many other important informational resources they have recently developed is a Supplemental Advance Directive for Dementia Care.
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My close relative had dementia, and it got more and more severe, yet with very good care from relatives and an excellent facility, she was able to smile and enjoy life until her very last days. I would not mind an end like that.
However I do not like to read an article from Kaiser in the NYT- despite the disclaimer at the end- Kaiser is in the business of making money and restricting care in order to do that. I know- because a dear friend of mine was murdered the night her psychotic relative was refused a bed by Kaiser. So when I read an article like this, advocating people may refuse expensive testing, I can't quite take it seriously as a medical/ethical opinion. Kaiser is going to save a bunch of $ if people don't get these tests.
5
@Alyce Kaiser Health News (KHN) is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.
9
@Alyce Kaiser Permanente isn't perfect, however, they're not for profit. They do manage costs, but not for the sake of profit. Just putting this out there.
4
I had to keep my mother home, because no nursing home or daycare or hospital would deal with her.
1
Soon after both my parents developed dementia simultaneously, I was seeing dementia in myself with every forgotten word or name. It was debilitating. When my fears made me turn down wonderful opportunities, I took both a neuropsych analysis and a genetic panel. Knowing that the genetic panel would only show if I have a few of the myriad possible genetic predictors, and that even if I did have them I may not get the disease, I went ahead. I cried with relief when all tests came back clear. My doctor will keep the neuropsych results for a baseline for future tests. I do not think these evaluations would be a good path for some, but for me, "I'd rather not know" would never be a peaceful choice.
15
Testing cognition, etc., is all very well and good, but since the diagnosis of Alzheimer's is only verifiable by autopsy, I often wonder how many supposed Alzheimer's victims are actually that and have not succumbed to some other undiagnosed disease. I often wonder if the threat and frequency of Alzheimer's is as great as has been claimed.
11
@Linda F If it's some other form of dementia and not specifically Alzheimer's, it's still debilitating and terminal. Not sure it's a distinction that matters much when there's no effective treatment.
13
Goodness no. All forms of dementia at end stage are clearly diagnosed because the symptoms are so extreme. What the autopsy does is verify the type of dementia and the severity of the dementia. It is possible that someone with early dementia (but undiagnosed) dies of something else but that actually contradicts your premise. I am not sure you understand dementia.
5
My mother could still walk and speak a few days before she fell into a coma and died in her bed. But her dementia was off the charts, even so. The cause of death was "cachexia," wasting, but she was still running around the drug store a week before she died. I knew she was dying, but her doctor was in denial: "she can go on like that for 10 years!" Thank heaven she didn't.
8
No mention of head injuries.
I was a determined but lousy athlete and have been knocked unconscious several times. Add in one grandfather who had Alzheimer's and another who was institutionalized with hallucinations for years because of Lewy bodies, and what are my chances?
I'm all in favor of assisted suicide when life becomes a living death.
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@KJ Unfortunately, even the states that allow assisted suicide do not allow it for people with Alzheimer's. This is an outrage.
28
@KJ I could not agree more. My mother-in-law had dementia and it was sad watching the decline. My mom has the start of it and it breaks my heart. Thankfully medical assistance in dying is legal here in Canada and I must say having had stage 3 cancer and then the possibility of dementia in my future it gives me a certain amount of peace knowing I have some control over my final stage of life
28
Strongly agree that assisted suicide should be legal in cases of dementia. The person is already gone. I don’t want to live that way or burden anyone with caring for me. It’s not more time living, it’s more time dying.
28
Dementia runs in my mother's family, sisters, mother. My family and I are on the alert. Once, years ago, an insurance person was trying to sell me long term care insurance. Who would want to live like that? I'm exiting this life soon after any diagnosis. So far, so good.
31
My physician husband has always said before you decide to have a test, you better think about what you will do with the results. We decided not to have pre-natal testing for Downes’ Syndrome with our three children. I can remember Arlo Guthrie being asked years ago in a television interview whether he intended to test himself and his children for Huntington’s, the disease that killed his father Woody Guthrie. He replied: Why would he do it? Since there was no prevention or cure, he said he just intended to keep enjoying life. Looks like he has. Time and chance come to us all.
29
Please google “Dementia Specific Advance Directives”! They offer hope to those of us worried about living with dementia. They break the well known basic dementia progression into the three stages of early, mid and advanced. Each stage is described and the person can choose what level of medical intervention would be acceptable, if the person was in that stage. So, for example, if I were in early dementia, I might choose to receive outpatient antibiotics, but not further intervention. It lines out when and to what degree a person would like care declined. There is another directive available allowing a competent person to decline being coaxed or assisted to eat, if in advanced dementia and unable to self feed.
24
Until there is a cure or a really effective treatment I won’t get tested even though it’s on both sides of my family. If I did I’d worry with every little memory slip. My paperwork is all in order and I have long term care insurance. I’ve tried my best to make it easier on my family if the worst happens.
7
My father, who was a very intelligent mechanical engineer, died of Alzheimer’s at 84. He lived in a Florida nursing home for two years where, in the last year, he lost all capacity for speech and eventually stopped eating and drinking. Before that, he forgot how to eat but kind occupational therapists “taught him” how to hold a fork etc. which worked for a while. The home was profoundly depressing even though he was always well taken care of physically. Many of his caregivers were immigrants from Barbados. (Wonder how many American citizens want those jobs? Trust, me, very few!)
My main thought every time I visited, aside from sadness and horror over the fact that this was how he was dying, was that we are smarter and more compassionate towards our pets when they become ill than we are towards human beings. I have no desire to live into my 80s and 90s if that is what awaits me. Trying to live my best life and would seriously consider moving to a state that allows assisted suicide should I get the diagnosis. We all have to die of something.
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Assisted suicide laws are only for those with a terminal illness and death expected within 6 months. So, they do not apply to dementia sufferers. Thus it’s necessary to plan one’s final exit by other means, such as VSED or options presented in the book Final Exit by Derek Humphries.
1
I am really troubled by our lack of concern about the blood brain barrier.
When doctors wish to medicate the brain they add surfactants like Polysorbate 80 to medications and the Polysorbate 80 enables the medication to pass through the blood brain barrier.
But the function of the blood brain barrier is to keep toxic chemicals in the body from entering the brain.
The problem comes in when polysorbate 80 is also used as a general food additive in things like salad dressings and ice cream. This has to have a detrimental effect on the brain but it is still done.
Why????
15
@Allan Wow you are right! Dementia is caused by polysorbate 80. What a breakthrough. No concern here for diabetes, obesity, HBP, lack of exercise, substance abuse, junk food, etc. It just has to be polysorbate 80.
2
I pray that a treatment is found before I get there, but if it doesn't and if I do, I will end it by my own hand.
19
@Roberta tricky thing, you'd have to do it early, and at that point life still feels sweet :/ I'm going to have to just hope that my husband is still alive to help me along...
21
I have been diagnosed (mri) with Alz +5 years now. Need all mechanical, aids: iPad, Apple Watch, iPhone to keep me close to on track. Missing events is a new norm. Conversation contributions are limited to where I can add an insight (but not a fact). A verbal reminder on an upcoming event remains active for 10-15 seconds. Luckily, humor remains strong. I’ll take it just fine fo now.
107
@Neil Hang in there Neil! Your positive attitude may yet carry you further than you know.
63
This is a very good article. I have talked this over with my Dr., and she leaves the choice up to me. For several years, I thought about getting tested-as my mother had FTD. After several years of reading about the disease, and interacting with older people, I decided to do my best to live a healthy life, and NOT to be tested. I would not trust any results anyway. Do I want to consider assisted suicide if I get it? YES. Do I have an advance directive? YES. In no way do I want my kids to have to take care of me if I reach the point my mother was at. It's all such a mess-I am obese, but live a clean and healthy lifestyle for the most part (except for not losing the weight). I should do something about it, as I have done for depression, but it has eluded my for 25 years, and I am about ready to give up.
10
Where is parkinsons in this discussion? My dad suffered for years and by the end was a shell of himself. I am told there is a genetic marker for a predisposition to Parkinsons but what would I do with that information, other than absolutely freak out. I live a healthy lifestyle, I encourage my family to join me in my healthy eating and I have a job and social network that I love. . . will any of that stave off PD? Who knows, but it makes life more enjoyable in the meantime
11
@michelle you're right, live in the moment, that's the best tactic...
3
@michelle its an article about dementia, not PD.
2
@Sharon A certain percentage of individuals with PD will also develop Alz. There is a also a form of dementia that can occur in PD with slowing of cognition, concentration problems, and forgetfulness not as severe as the memory problems characteristic of early AD.
2
My grandmother, father and mother all died from Alzheimer's. I am not going to do that. The second, confirming diagnose of that awful disease is my last day on earth. I have had a wonderful life, as varied and interesting as I could have ever hoped for. I won't leave any obligations undone. I have helped many people, actually thousands. For me to try greedily wring more time our of the life I've been given and risk the unhappiness that it would bring to my wife and family is unthinkable.
113
@foggbird
I'm 51 and my situation and plan are the same as yours.
27
This is the best article on dementia that I've seen over the years. I'll worry less now, and enjoy more.
18
Other diseases rob of life, dementia - in all its forms - robs you of your memory of life. Everything that you were, all that you loved, did, suffered becomes a vacuum. That is the difference - the horrible difference, as you progressively lose the self.
32
My wife's Alzheimer's has given me a purpose in life that surpasses any other. Just ask God for health and the means needed to care for a loved one. Turn the burden into. blessing.
18
@Eliseo Martinex Although I would not wish Alzheimer's on my worst enemy, being with my parents through their disease was a profound experience of shared loving and caring and it drew me closer to siblings who were even more involved in their care than I could be. It was a hard time but has changed my life for the better.
5
@Eliseo Martinex
My grandmother took care of my grandfather who had Alzheimer's. He regularly used to throw plastic bottles filled with urine at her. That's not a "blessing." It's a curse.
13
@Nancy Robertson I understand. I am sorry for your grandmother's experience.
6
You have to die of something. To me, Alzheimer's would be okay. There are a couple of times a day--happening since my teenage years--when I am all confused, nothing makes sense, and I know a bunch of stuff just happened, but I can't remember any of it, so I just let it go and relax and live in the confusing moment.
These times are when I am falling asleep, or when I have just wakened from a busy, emotional (and usually very pleasant) dream either in the morning or the middle of the night, which nonetheless I can't remember. I can't place where I am. My brain doesn't work.
Would Alzheimer's be anything like this? For whatever reason, I like the feeling during these times.
As far as loathing to have people take care of me--why? I've worked hard all my life, I've paid my taxes, and I have saved money for my end-of-life care. People are paid to take care of Alzheimer's patient's--let them take care of me; they choose that occupation willingly and perhaps they enjoy their work. If I get this disease, I hope they give me ice cream, take me for walks and let me watch TV. By the time death comes, I won't be self aware so I won't be scared. I ~would~ like to have people to constantly remind me I have Alzheimer's disease, so I understand why everything is so confusing.
I wouldn't kill myself over an Alzheimer's diagnosis. What would I not want to have? Mesothelioma. I had three uncles die of that. I won't go into it, because it's too depressing and awful.
14
@KTT I feel the same way. My mother died last year of Alzheimers at age 95, after having struggled with symptoms for decades and spending her last seven years in a nursing home (confined to a wheelchair after a hip injury). My DNA test showed I have double APOE4, so my risk is quite high. I already (at 66) feel that in recent years my forgetfulness is increasing and complicated tasks are becoming more difficult. But the DNA results have spurred me to research on the things I can control, improve my diet, exercise and lifestyle, seek to expose myself to stimulating situations and enjoy life as much as possible while I can. I also have to say that I do not feel Alzheimers is such a terrible way to go. I feel the person with Alzheimers suffers most in the beginning, while still aware of what is happening. That gradually changes--at least in my Mom's case. She gradually grew more peaceful. Towards the end her hearing and vision were almost gone, so she rarely opened her eyes and seemed to sleep through most visits, only occasionally participating in conversation, and making it evident that in her mind she was imagining a whole rich different reality where she could still put a pot of coffee on for visitors, or get things out of the oven. As she grew quieter and drifted farther into her own world, it gave us all a chance to accept the fact that we were losing her. All in all, it did not seem such a tragic way to go.
12
Stress increases the risk of dementia. That means health issues, medications, surgery, unhealthy lifestyle, lack of social life, etc. Apparently many elderly take over a dozen medications a day, an untested witches brew when mixed together. As are the myriad supplements that are supposedly better. Reducing stress and improving health should be the goal, there is no magic potion.
12
My mother briefly improved when she tossed her meds.
1
The real question to be asked in the case of many screening tests (including for dementia) is "What then?" What would you be prepared to do if the results of uncertain predictive value are positive? If, for instance, it would mean you would lead a healthier lifestyle - well, you can do that anyway and reduce your risks for a number of conditions. If it means that you will have all the paperwork and arrangements made for care in case you die or become ill - well, you should do that anyway too. So what exactly is to be gained from screening? If it is positive, you get to worry. If it is negative, you may overestimate your degree of safety from both illness and death. A negative test for one condition does not preclude risk from others.
Even if positive results from a screening test, e.g., colonoscopy, that will (almost always) accurately diagnose cancer or another disease that requires treatment, it is wise to research a range of possible treatment options before the test, not after, when you may be driven by fear. And - at each decision point during treatment, stop and ask "What then?"
13
I don't want to know either - not only about dementia, but also about 'pre-dispositions' or genetic risks for cancers etc. I do all that I can to live a healthy life, so what would I change? Nothing - I'd only worry about things I can do nothing about. Then, too, we can spend our time worrying about one thing and be hit with something we never imagined at all.
18
Yes, I was hit by a SUV and turned into a fat, old geezer at the age of 57.
I would not take any diagnostic test for this disease. Both my husband and I have dementia in our families--Mom's was diagnosed late but very probably was there for 20 years or more in early stages and his uncle's was pretty early-at 60 or so. I'll continue to live as I have been with a focus on eating well, keeping up exercise and social connections that keep me as active, strong, engaged as possible and what making contributions I can to my and others' lives. I would not want this dementia certainty hanging over the rest of my days.
But I WON'T ignore signs if they appear for me like my mom and dad did for so long in her case.
I don't want my kids and husband to have to care for me in dementia. I don't want us to have to care for him in that state. I don't think I have fortitude to end my own life before I'd forget I want to or have the ability to take action.
I don't know the answer.
26
Thank you for this.
5
This essay mentions general anesthesia as a risk factor for dementia. What!?! First I hear of this, and it is alarming! Please, NYTimes or informed readers, tell us more!
11
@Elise
Per my sister, an operating room nurse of 38 years: general anesthesia does a number on the brain of the elderly. This has been known for a long time.
35
@Elise
And in case you don't know urinary tract infections can also play havoc with the brain of the elderly. I found out how common this is when my mother had a UTI.
Per alzheimers.net/2014-04-03/connection-between-utis-and-dementia/:
‘”Urinary tract infections can exacerbate dementia symptoms, but a UTI does not necessarily signal dementia or Alzheimer’s.”
24
@Elise As a now retired anesthesiologist, I want to reply to this issue....Having had a general anesthetic a any age even as an older adult does not predispose you to having Alzheimers disease. While it is generally accurate that an older adult may have some issues in the immediate post op period, even extending over several days or more, this is a reversible problem with time...Older adults require more time to metabolize and excrete drugs and many different drugs are administered during the general anesthetic.
29
If you get the bad diagnosis and decide to take your own life you need to do it before you cannot execute the plan. It is a paradox....you want to keep enjoying life as long as possible but if you wait too long you can't plan and execute your wishes.
80
My mother's Alzhiemers turned out to be very healing for me in the end. She had been a neglectful and abusive parent when I was a child. After the hump of the intital onset she became a smiling, sweet person. It is possible she was always that way but had the stress of her own abuse, being a single parent, and raising two kids. She had alzhiemers for about 15 years so I was lucky enough to be able to replace my memory of her. She had made enough money so I could take care of her first at a facility and then back in her home with 24 hour care. I have planned my furture with Alzhiemers, just in case, and feel fine about what ever happens. I have no need for a test.
26
@Fish Tate: After what I experienced with my parents, I would guess that a significant reason for your positive attitude about a dementia-death with your loved one is due to your ability to financially afford good (perhaps even trusted? excellent?) care, and the ability to have around-the-clock care. This is decidedly not the case for most families. I am very thankful your mother’s prudence with her finances afforded you the means to give her good care. The lack thereof is a HUGE part of the stress for family embroiled in of end-of-life care for loved ones. I pray I have the means and will to end my life, dementia or no, finances or no, before my son has to endure even a fraction what I did with parents (neither of whom died of dementia).
6
I can’t say I understand the people who say they want to get tested in order to prepare for having Alzheimer’s. Why not prepare go ahead and have your affairs in order anyway? After all, a negative test does not guarantee a person won’t get dementia.
27
I don’t think it is moral or fair to one’s children to choose to die of dementia. Sure, you may not feel too bad after you lose all recognition and are living like an animated vegetable, but you will drain the joy and life from your children for the many years you require maintenance and care. There is nothing uplifting for your children about this experience. It is a parent’s most selfish act that I can think of. And from what I have seen, the person’s determination to live rather than take their own life hardly ever stems from religious belief. It is almost always motivated by simple animal fear and selfish egocentrism.
27
@voltairesmistress I lived through my mother's dementia, and fear for myself (FTD). In NO WAY do I want to "live" as she was, and I'm sure she would not want to either. I do not see her "will" to live as selfishness, but rather as an instinct, and a tribute to the amazing resilience of our bodies-even near the end. Do I believe in assisted suicide-yes. Do I think it will be available? No, Do I want my kids to go through what I did? I don't even think they will-one of my kids will just permanently disappear from my life, the other one will try, succeed in helping, and be so overwhelmed with life that the stress will damage her. Do I try and live healthy? Yes-but I am obese-and and about to give up on ever being within the recommended weight range. SO it's all my fault? Probably. But I am human.
4
@voltairesmistress And not just kids but spouses, too.
2
I volunteer at 2 different memory care facilities, and leave depressed and cannot understand why we prolong life without dignity. I see hundreds of folks passed out in their chairs, in their beds, in dining rooms, waiting for someone to shove a spoonful of mashed up whatever in their mouth, and make them swallow. Every time I’m there, I see myself in one of those facilities, but god willing, I’m determined to leave this world while I’m still talking care of myself and on my feet. I will continue to visit these helpless people who are forgotten by family and friends, as long as I can. I hope they know that I’m there and I care about them, but I wonder, if they could express their wishes, would they want to go on like that? I have my medical power of attorney and my 5 wishes done, I don’t want our modern medical advances to keep me breathing, that is not life.
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@BB
"cannot understand why we prolong life without dignity"
It makes money for someone.
EVERYONE with dementia has a co-morbidity. If the meds stopped, they would die.
But it's profitable ....
19
@Deb
Where health care facilities - nursing homes, hospitals, pharmaceuticals, etc. - are NOT for profit, we might have a fighting chance. But many are and thus are under the direction of folks whose bottom line is moneymaking. Not blaming "capitalism;" but I am blaming the lack of oversight over "investors" and where and how we allow them to play. Have we sold our soul completely?
2
I'm 52 and getting to that point where retirement is so close I can almost taste it. I've planned for it for so long ... but if I knew I was going to get Alzheimer's, I'd quit my job today, cash out my 401k and start knocking items off of my bucket list. If there was a reliable test, you better believe I would take it - I'd want to know.
26
Comment 1:
I am sorry to say but some of these comments tell me that those who wrote them have no clue as to what dementia is. I encourage those of you who have not been exposed to this horrific disease to take a tour of your local nursing homes or better yet volunteer there to help the poor souls who have no visitors.
From the stories my 97 yr old mother told me her grandfather had dementia. He was dead by the time he was 65. Maria, his daughter, had signs of it as well. I was 8 yrs old when we left Portugal, I remember my great-aunt screaming at all times of the day and night. Maria’s daughter had to lock her in a room or she wouldn’t take off into the fields or woods around our village. She wouldn’t remember how to get back home. When Maria’s daughter went into her room to care for her, Maria might hit or bite her.
All 4 of my mother’s siblings developed some form of dementia. About 15 yrs ago, my uncle was diagnosed with AZ at 76. He died 2 years later having no idea who he was. He couldn’t remember his family either. My aunts developed dementia in their 80s before dying several years later. My youngest uncle now 84 began showing signs of it last year. According to my cousin they’ve been able to manage it for now with medication. He is still at home.
And then there is my mother. She took care of my father who was a stroke patient for 35 yrs. She had back problems all of her life caused by a childhood injury.
15
@M. Natália Clemente Vieira
Comment 2:
Shortly after my father’s death was when she began to take blood pressure medication. She was 85 at the time. She cared for herself, cooked, cleaned, sewed, knitted, crocheted, and gardened just as she did while caring for my father.
In Sep 2016 she had shingles. In Nov after I insisted my sister take her to the doctor, we found out that she was having auditory hallucinations. This had been caused by a UTI. We tried dealing with this at home for about 2 wks. A few days before Thanksgiving, she left our house around 12AM. Fortunately she dressed appropriately and took phone numbers with her. She ended up 2 streets down from ours and the kind folks who answered their door called the police. They in turn called my sister.
I had been busy preparing for the next day at work and didn’t notice that she’d left the house. I was made aware of it when my sister walked in with a policeman. She didn’t feel safe coming into the house by herself because she didn’t know what she would find. In the ambulance my mother had been talking saying that she had either killed me or I had tried to kill her.
My mother was taken to a geriatric psychiatric hospital. As she needed 24 hr care and could have walked out of the house again, my sister and I placed her in a nursing home. She has been a locked unit for the past 3 yrs.
13
@M. Natália Clemente Vieira
Comment4:
I have barely touched the surface of what it is like to be living with this devastating disease and dealing with a parent in a nursing home. I could say much more but I’ve already gone well past what is allowed in this forum. I hope that those of you who wrote “Dementia sounds preferable to normal life.”….. “Compared to other illnesses, I would prefer to have dementia” and other such comments educate yourself. Rest assured that you neither want to have this debilitating disease nor do you want your loved ones to watch you wasting away for years. There are people in my mother’s nursing home that have been there for more than 10 years and are in a vegetative state. Some have been abandoned by their family or have no family.
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@M. Natália Clemente Vieira
Comment 5:
On my father’s side there is a strong history of stroke. My grandfather had at least 2 before he died at 81. My grandmother had one at 90 but I know that several of her siblings had strokes late in life.
My father, however, had a debilitating stroke at 51 and died at 85. He was paralyzed on his right side and was aphasic. He was able to understand us but wasn’t able to speak. My father was imprisoned within his own body for 35 yrs.
I am now 65 and I don’t want to end my life with dementia, a stroke or any other horrible disease. So when my mother dies, I’ll re-evaluate my life, sell my house and travel for a while. I’ll make arrangements with Dignitas in Switzerland or a group closer to home that will help me end my life on my terms. When I am ready to die, I’ll go there and then travel to the Land of the Ancestors which to me is located somewhere above Mt. Kilimanjaro. Hopefully all of my ancestors will be there to enjoy the view with me!
40
Compared to other illnesses, I would prefer to have dementia. I don't know of anybody who died directly from dementia. The people I have seen with dementia seem happy - they are in their own bubble but have no physical pain. They may be a burden to family members but what older parent isn't?
3
@Benni Unfortunately, dementia is not a benign disease. Many times, those with dementia are agitated, tearful and experience behavioral issues. This can cause them and their loved ones to suffer. Dementia can affect gait, leading to falls, and impaired swallowing, leading to choking or the need for altered diets. These are just a few of the many insidious effects of the disease. It can cause great suffering
61
@Benni I think your perception would change if you went through this disease with someone. I went through it with my dad for 7 years and I am still suffering the consequences of what I experienced. It’s the most horrifying, cruel nightmare ever and it shatters loved ones as they witness the person they once knew turn into someone else and eventually disappear into an empty shell of their former self. As for the person going through it... Also a nightmare that I won’t go into... I’m sorry to burst your bubble (no pun intended) but I guarantee you, it’s not the disease to pick if you had to pick one (for yourself or someone you love).
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@Benni
Hi Benni:
I suspect that if you read my 5 comments you will understand that not all dementia patients are happy in their own bubble. Please volunteer at a nursing home to get a real view of the diseases (and their stages) of the elderly. It is not a pretty picture.
My mother and many of her fellow residents are in constant pain. It is neither a physically nor mentally painless disease!
Thank you NY Times for allowing me to share what my mother is going thru. Most people who have comments like Benni’s must educate themselves.
60
both my parents died while suffering dementia. the only way i would take a test would be if they would let me opt for assisted suicide at x age if the test were positive. otherwise, i would prefer to remain unaware and hope for a heart attack or a car wreck before i get to the likely onset age.
16
It’s normal for people to become a bit forgetful as they age. So how can you tell a harmless "senior moment" from Alzheimer's disease? One in eight people 65 and older have this devastating form of dementia. In its first stages, Alzheimer’s may not be obvious to friends and family. But there are some early warning signs to watch for. n early Alzheimer’s, long-term memories usually remain intact while short-term memories become sketchy. Your loved one may forget conversations you had. She may repeat questions that were already answered. The disease also disrupts speech, so she might struggle to remember common words.
It’s normal for people to become a bit forgetful as they age. So how can you tell a harmless "senior moment" from Alzheimer's disease? One in eight people 65 and older have this devastating form of dementia. In its first stages, Alzheimer’s may not be obvious to friends and family. But there are some early warning signs to watch for.
.
8
@howard cohn There are some simple screening tests you can find on the internet. They shouldn't be used as a diagnosis, but as the start of a discussion with your physician. They seem too easy to be a test, too, until you find them too hard.
3
@howard cohn The Alzheimers Association is a great resource to help illuminate this disease: https://www.alz.org/ There are several articles that help with the question you pose: Senior moment or Alz? Stuff like: everyone forgets where they put their car keys once in a while. If you forget what car keys are FOR, that could be a sign of a bigger problem. The forums where caregivers, spouses, etc. of those affected are simply great and have helped me immensely as I care for my mom with Alz.
9
There is a path of care for someone with Alzheimer's or dementia of love, acceptance, commitment, respect, understanding, and maintenance of the person's control over health and life decisions - i.e., the same things we all need. And there is another path of care, the one many follow today, that is very different. The first path can, in spite of the affliction, offer all those involved wonderful, rewarding experiences. What can the second path offer?
3
@Benjamin Ochshorn I found nothing rewarding or wonderful about my mother’s dementia. She was in despair and cried to die daily.
49
What about if you just don't want to change anyone's adult diapers or spoon feed them or if you don't want to wind up helpless in diapers yourself? Also, how about more older people at the very least having DNR orders? People need to imagine themselves as old, cognitively challenged, maybe incontinent before it actually happens to them. I look my older adult dementia patients and wonder what they were like 20 years ago- did they ever picture themselves with dementia-totally dependent on others for every need? And would they really want CPR or to be intubated if they went into cardiac or respiratory arrest when they already have dementia or Alzheimer's, terminal conditions that often cause years of heartache and pain for all involved?
2
If you use the knowledge to lose weight, eat better, exercise more, socialize, engage the mind, etc. Then I think it is good. It still may not stop the dementia, but those are positive health habits. Skip fear and worry, live for positive action.
15
In my dealings with medicine (veterinary) one of the biggest decisions I had to make was if treatment was “prolonging living or prolonging dying,”. Prolonging living involves some quality of life. Prolonging dying is drawing out the inexorable suffering with virtually no quality of life, just because you can.
That means a whole lot to me, personally. Well before I become incompetent from terminal dementia, I intend to spare myself, my loved ones and, by the way, my family’s remaining finances that I worked a lifetime to procure for them, by checking out early. Dragging out dying serves no good purpose but does subject everyone to ongoing mental torture and often financial ruin. And for what purpose?
That’s me. You may feel differently and that’s fine!
180
This piece raises very important issues and does a great job at trying to tackle an incredibly personal and emotional issue. I also have the APOE4 gene and a family history of Alzheimer’s and through my work at UsAgainstAlzheimer’s I know there are some steps I can take: 1) get a baseline cognitive assessment to detect any changes early (If you are over 65 - Medicare covers this and it is only @15 minutes); 2) take steps to reduce my risk, such as exercise, eat a brain-healthy diet, manage stress, stay connected to friends and family and watch my blood pressure. I think it is important to remember that many causes of dementia are not Alzheimers, some causes are preventable, and symptoms may even be delayed or mitigated through lifestyle approaches. We need a cure and we are fighting for one. But there are plenty of battles to be won and it is worth fighting back.
13
Dementia sounds preferable to normal life. A rollercoaster ride where you never know what will happen. At least you are in a protective fog. Sounds preferable to the viscitudes of normal life.
3
Dementia is terrifying to its victims and horrific for their loved ones. Dementia is not some happy oblivious bubble. My brother had frontier- temporal dementia. He knew he wasn’t himself. He was a highly educated successful professional who gradually lost his ability to converse or communicate his needs. His world crashed around him and he lost the capacity to comprehend. He could not communicate when he was in pain or hungry or tired. We watched him disappear; only his body continued. It is a hell on earth. I would not wish this on anyone.
13
Those of us who have suffered multiple concussions also worry. It can take me several minutes to recall names. They're in there, but take their time coming out. I don't remember faces unless I see them frequently, including my own relatives. Everything else works fine. The big problem is that declines are gradual. By the time you've decided your life is no longer worth living, you may be trapped by the system and put into storage until you slowly waste away.
I agree with Nancy. We should be able to leave gracefully at the time of our choice without — as a neighbor with early-onset dementia did — walking in front of a train.
45
@KJ I urge you and other readers to reconsider your choice of suicide. Walking in front of a train (or semi-tractor trailer truck) is surely quick and irreversible. But it's also a horrific, emotional nightmare for the train conductor or truck driver, one that requires significant counseling. And their emotional crisis impacts those with whom they work and live. For some, overcoming such a tragic experience is impossible. Their trauma leaves them with PTSD symptoms.
So while you may not wish to be a burden, and I share your sentiments deeply, using a train or truck creates another burden, this time on innocent people with families and fulfilling lives.
17
Agreed. Just stop the intake of food and fluids (VSED). It’s legal and won’t traumatize any train operators.
As with the contemplation of mortality in all its guises it helps if you can begin the think of yourself as being something more than the body/mind complex. If the body and mind comprise the totality of your existence, then its demise is your demise. That's a scary thought, unless you happen to be a hero in an old John Wayne movie.
Most people understand the "something more" question in religious terms. That works. But if the idea of a deity is unappealing, there are other approaches that focus more directly on dealing with the mechanics of the mind. Buddhism offers many such techniques.
And even with a solid foundation in spiritual practice, American culture itself presents an ongoing obstacle. This is a society built squarely on materialism and hedonism. Much of popular religion, despite its terminology, is riveted upon offering wealth, power and pleasure in the here and now. It takes a concerted effort to shut out of your mind the constant barrage of cultural static.
But here is the good news: the Age of Trump has taken much of the sting out of the idea of death. Who is going to regret leaving this mess behind? There is no Twitter in the Great Beyond.
36
@woofer Thank you Woofer. I've had three concussions in the last ten years, resulting in chronic migraines and mild cognitive impairment. I'm told that they also increase the chance of my getting dementia unless I do all the things recommended in this article. I have immersed myself in Buddhism since the first concussion which has helped me tremendously, specifically because of what you state above - I was able to shut out much of our cultural static in which I could not participate anyway. I found it even more overwhelming than usual because of my concussions.
I've told myself that they have been a sort of blessing in helping me back out of this troubling Age of Trump and what led up to it.
7
Very much enjoyed your comment.
The three rules of high-value care medicine:
1. Don't check a test that's not going to change your plan. Very relevant here. If you have a strong family history of memory issues, best to be doing all you can early on to keep yourself healthy - exercise, taking up new hobbies/activities, keeping your BP under control, etc. A positive or negative result on an imperfect test doesn't change that plan.
2. When you have a low pre-test probability of a disease, a positive test is more likely to represent a false positive than a true positive. Less relevant here.
3. The true "cost" of a test is not just the dollars, but the subsequent tests/interventions it triggers, the anxiety it provokes, the cost of time to the patient and ordering provider, etc. Very relevant here. People's lives have been ruined through the injudicious ordering of unnecessary tests: unnecessary procedures, time and money spent, and the debilitating worrying they can provoke.
Bottom line: there aren't blood tests yet available that can meaningfully inform you of your risk of developing dementia. Do the things within your control to keep memory issues at bay, and keep your fingers crossed.
31
My mother had Alzheimer's. It was very difficult for all of her children to see her decline from a highly intelligent person with reams of Shakespeare at her command, a ferociously clever sense of humor, and a wide array of intellectual interests. I grow closer to the age at which she fell ill, and I comfort myself with the observation that once she got through the infuriating stage of realizing what was happening to her, she didn't seem unhappy or in distress. I am fortunate that every time I saw her, she knew I was important to her, even if she didn't have all the details, and her eyes continued to spark with her originality, although her behavior and speech made no sense. I know I may get this disease; I'm trying to plan for my own care, but I think it's worse for the observers than it is for the victim. At least it seems that way to me. The early years were definitely very hard on her as well as us.
28
@Charlotte K
Agree. Seeing and sensing the essence of oneself disappearing is extraordinarily painful. Infuriating is a great way to describe it.
Perhaps after that, when remembering 'then' vs. 'now,' it's less so?
1
I am 43 years old and preparing for a year of genetic testing and counseling for testing of the mutation of gene C9orf72, a gene in the same chromosome 9 as ALS.
I'm lucky to have my stepmother, a renowned geneticist, providing me with incredible detail about the expansion mutation to be considered.
My paternal grandfather, great-aunt, aunt and father all had/have a wicked frontotemporal dementia related to said gene mutation, developed as result of inbreeding in Jewish ghettos in Poland (so the story goes - this would have been well before WWII and the Nazi occupation).
I have a 50% chance of having the gene mutation, and the dementia comes on earlier with each generation.
I'm getting tested because I want the opportunity to think about where and how I'd want to live once afflicted. My husband is 14 years older than me, and I have no children of my own (two step-daughters). I don't have any siblings.
There's very little I'd change about my life right now. I love my home, I love my job, my husband and I travel pretty frequently, I'm pretty good at living in the moment. But if I know I can expect FTD in the next 10 years, I need to know where I'll want to be "stuck" in memory care. I'm pretty sure I'll want to have cats and plants and good food and music. I think I'll want to stay in a good four-season state, but maybe I'll want to be near an ocean? Maybe back in a big city? I 'll want to consider this while my husband and I could still enjoy some move together.
21
Dementia is a factor in my family’s history and stalks us. I have worked in healthcare for nearly thirty years and have witnessed the responsibilities incurred with any evidence-based prognosis. If anyone is or will be in an “advantaged” position to prepare for a demise from dementia, whether likely or not given any clinically based projections, the costs of shielding others from the very peculiar tragedies of dementia are nonetheless hardly calculable. We must do our best with all the empathy and compassion we can summon. “Shielding” myself or anyone else from the truth can never dispense with the reality.
8
It’s fascinating that there’s not ONE word mentioned about the role alcohol intake, either in individual or family histories, can and does play in putting us at risk for dementia or Alzheimer’s.
Years ago, Alzheimer’s experts were saying that alcohol consumption was the number one risk factor in Alzheimer’s. Now it’s barely mentioned at all. What happened?
16
@Works With Dementia
In fact no....
Alcoholics do develop alheimer's type dementia at higher rates and younger than the average dementia patient however, its incidence is fairly similar amongst drinkers and non drinkers. Its is far from a major cause of alzheimers though it definitely associated with it in some patients.
7
@Works With Dementia I wondered about that too. A neurologist told me that my father’s dementia might very well have been made worse by his years of hard drinking. That was over 20 years ago. Has medical opinion changed?
3
I have to say I’m more skeptical of whose fortunes are funding these studies. More and more of these studies are funded by private endowments, and fewer by the government.
Also, it’s more profitable to get someone to buy prescriptions or genetic tests than to urge people to cut back on alcohol consumption. Alcohol is a BIG industry, with a long arm.
Also, ask anyone in the field of substance abuse how nourishing routine and long-term drinking is for your brain cells.
3
No cure. No treatment. Scary as heck. Exercise and diet are recommendations but without solid proof. As a caregiver for 15 years, I advise my love ones to prepare for the worse, then live your best life. No matter what your risk group is.
26
I do not have any family history for dementia.
I have witnessed dementia in several people, it is truly horrible.
Once dementia is confirmed, at the earliest possible stage, patients should have the right to life-ending medication. We should not force a person to go through the irreversible torment of losing their mind if they choose to end their lives first.
184
@Michael Haddon
retired AMA attorney F/71
It is impossible to foresee a time when either those in early stages of dementia(s) or caregivers/Power of Attorney holders for these individuals will be permitted to access "life-ending medication."
The Swiss have the most advanced law on assisted-death in the world. And the Swiss do require a mentally competent person/patient to complete their process and get to assisted-death.
After caregiving for paternal grandmother and my father over their 14-year arc of Alzheimer's, I have completed all the at-risk testing. This week is Invitae's AD panel.
My choice is to look at the typical age of onset of symptoms for women and leave before age 74 arrives on my calendar. DIGNITAS Spring 2023 or sooner. Already qualify for pain resulting from severe osteo-arthritis/OA from DNA too and fractured spine in four car wrecks.
Lots and lots of wishful thinking among those commenters here stating their determination to NOT end up in a nursing home or NOT be a burden on family and friends who may have to provide their care.
Me? I'm having a great time giving away $Ms to friends and supporting DIGNITAS members who cannot afford flights to Zurich. Sleep really well every night too.
37
My grandmother was in the nursing home for 17 years with Alzheimer’s, she died at 81. And as of last month, my dad, her son, was diagnosed with late onset Alzheimer’s at 77.
If it happens to me, I fully intend to take matters into my own hands before living through that awful slow decline.
35
Thank you so much for this!
1
Long term care policies are no panacea. My mother has paid on her policy for over twenty years but the company is claiming that they don't have to pay because her dementia is "moderate." At her last neurology appointment she could tell the doctor her name, what county she lived in (where she has lived since 1968) and identify a ball point pen by name. She answered the other twenty-some odd questions incorrectly including what century it is and yet they still claim "moderate" impairment.
36
My mother had vascular dementia - a result of years of uncontrolled elevations in cholesterol and blood pressure. It was preceded by multiple TIAs and strokes and followed by the discovery of a vertebral basalar blockage of 85%. She was also troubled by lifelong clinical depression that went untreated. She died at 94 in 2016 from complications of a cancer recurrence, with moments of recognizing me and her other daughter, but often not.
I have low blood pressure and low cholesterol. I compete nationally in a sport that challenges me both physically and mentally. Do I worry, sometimes, that I’m slipping down that slope? Sure. Then I look around and realize have control over all the factors she ignored.
Grouping vascular dementia and Alzheimer’s in these studies and articles is a problem - we don’t know what causes Alzeimer’s. We clearly know what the root causes of vascular dementia are and how to avoid it. I’m not terribly worried for myself.
9
Know all this privacy forms you sign every time you go to the doctor? I was turned down for long-term-care insurance because I had talked with my doctor about alcohol concerns...they had no idea if it was a problem or not, but it was there in my file.
So no, I absolutely won’t talk with my doctor about possible dementia.
87
Read your long-term care policy fine print very carefully. There are lapse terms that may surprise you. These policies can lapse with a single missed premium! So when that memory starts to fade a bit, but long before you qualify to actually begin using the policy, you may find yourself uncovered. There are some ways to try to protect the policy, with "notify a friend" provisions, auto-pay from the bank account, etc. But the company won't even let you pre-pay. The intent is clear - these policies do have very high lapse rates and that is very profitable for the companies. A tax-funded long-term care program would be humane, but in this increasingly immature country, it looks like it will not happen.
65
@Bo, my mother’s ltc policy issued by Aetna specifically excludes coverage for any type of dementia. However, it does cover for issues related to activities of daily living, i.e. dressing, eating, using the bathroom, etc. So unless a claimant has a physical limitation or disability, approval of the claim will not happen.
17
@Bo States have different regulations concerning the circumstances under which these policies may be terminated by the company for a lapse in payment. And many companies have safeguards, like proxies who must be notified, etc.
2
@Bo
Washington State is just beginning a state-funded long-term care program. The tax to pay for it comes out of wages and is fairly small. You can opt out if you tell them that you have good long-term care insurance. They don't require proof yet.
1
Most articles on the risks of dementia have little to say about the growing body of research regarding dietary factors that affect the risks. Those dietary factors are not insignificant and deserve wider coverage in the media.
22
I completely agree with Ms. Graham. I don't want this test and I don't want to know in advance if dementia will claim my mind and life.
It's important to live your life with as little fear as possible. All these tests to ferret out potential health problems aren't foolproof, as the writer makes clear in this article. Why would we subject ourselves to a test that might provide a false positive?
Live well and love a great deal. Face the future with strength, understanding and kindness. What befalls us isn't necessarily the end of us.
14
The only complete, scientifically accurate diagnosis for Alzheimer’s and many other forms of Dementia is done by Autopsy. Others are Diagnosis of exclusion, and presumed illness. Get tested if you Wish, but only if you can be absolutely sure of anonymity. IF the information can be used against you by Insurance Companies, it WILL be.
Good Luck.
38
I have never understood the school of thought that less information is better.
Knowing the score in advance allows one to make life decisions while still being competent to do so. Lessening the burden on others, increasing the chances of self determination.
My mother, by all indications, when 70 years old, was going to make to near 100. But not in perfect health. She refused to consider buying long term care insurance, even though we had put some of her money in a life annuity that would have paid the monthly premium. I am an only child, so the burden would ultimately fall on me.
And by 80, she started showing signs of dementia. Which progressed. When she could no longer live on her own, she had to move in with me. Living with me for 4 years aged me 15 years.
Its simply irresponsible to not plan for possible outcomes, and you cannot properly plan without seeking relevant information. Putting your head in the sand is not a plan.
113
I don’t see here a reference to the well documented evidence supporting the use of lithium to delay and in some cases reverse the onset of dementia including Alzheimer’s. I encourage anyone with fears of dementia to read the wealth of online articles on the subject on the NIH/NCBI website.
8
About a month ago the Times ran an article by a neurologist who had concerns and therefor tested for amaloyd plaques. The test was positive and he took it to confirm that he was in the early stages of Alzheimer's which he had suspected. It would be nice if this article referenced that one.
7
All "tests" for dementia are useless and of little medical or scientific standing. First of all non of them has enough scientific foundation to be FDA cleared to diagnose anything. But more importantly is what is the use? There are not effective treatments never mind cures for any single type of neurodegenrative disorder so why bother?
19
@Ed The misdiagnosis rate of Alzheimer and other dementias is at least 20% (from large, well funded studies including autopsy to 60% by general practitioners who believe that short, screening tests such as the MMSE and the MoCa are diagnostic when they certainly are not. Also Early Onset Alzheimer (before age 60) is a completely different disease. As to amyloid plaques, these can be and have been found frequently in perfectly normal individuals. It is long past time that we recognized that the diagnosis of the dementias, especially Alzheimer, is, at best, a guess.
18
@Irene Campbell-Taylor - I think a baseline test isn't a bad idea. Then you don't need to do anything else unless you start seeing worrisome symptoms severe enough to make you think you're seeing Alzheimer's symptoms.
1
@Irene Campbell-Taylor
I should know I did 100's of neurodegenerative brain examinations during my training. Finding that the dementia fell under a different category from the clinically diagnosed one was a very common occurrence. Regardless, as far as the living is concerned its a moot point given that there are no effective treatments nor any in the horizon either. The fact is that plaques and tangles are not the cause of the loss of neurons they are cellular degenerative changes that are manifested as a result of some as yet unidentifed problem. Since the insult occurs while people have no signs of a problem its extraordinarily difficult to study the pathophysiology of dementias. As far as I know no one is interested in donating their brain while they are still alive and well!
5
Some thoughts I share with my elderly neighbors:
1) Forgetting where you placed your keys is not AD; Forgetting where you parked your car is not AD; Forgetting you own a car or that the car you "own" was a car you had 60 years ago is a sign of AD.
2) Forgetting where you placed the cell phone is not AD; Forgetting you own a phone or that the phone you "have" is from 1940 is a sign of AD.
3) Forgetting the name of a movie you saw last week is not AD; Forgetting you saw a movie at all or that the movie you "saw" last week was one you saw when you were 20 is a sign of AD.
Let's keep things is perspective.
184
@Bill - Many years ago when we were extremely busy at work, constantly "putting out fires," with barely time to sit down, we became so forgetful that a colleague and I, both in our 40s, began to worry seriously about Alzheimer's. Then we realized that our 18 year old clerks were experiencing the same symptoms. When the work load returned to normal, our memories improved.
67
@Bill
I have certainly forgot that I saw a movie until the very end and then I remember something that makes me realize that I have seen it. Letś hope that is not a sign of AD
7
While the neuropsychological tests are “gold standard” do your diligence about the training of who administers them, before you agree to this very stressful four-hour test. When I experienced the severe aftermath of a concussion - pain, memory loss, more than usual irritability - months after a hard tumble on a bus, I agreed to my neurologist’s advice to take the test. After a cursory greeting by a neuropsychologist, a Ph.D., the actual test was administered by a 22-year-old grad student who regarded me with pity through the entire experience, while a computer flashed bright lights in the background (not part of the test!) and she could not figure out how to turn it off. So, between texting on her phone, she would move to the next test, and the next, until I was so stressed out I could not longer think at all. When the “real” doctor returned after a brief read of the test, she asked me questions like whether I had trouble dressing myself(!), said the “mild cognitive impairment” I was experiencing was not what a 65-YO woman with my education and experience (MBA, long career success, still working and thriving) should consider normal. I was so shaken and angry at the way she casually delivered this news that I looked up her research, and learned she is a PEDIATRIC specialist in ADHD! Not exactly the person I want passing judgment on my capabilities. Do your homework, shop around, and do everything the Kaiser article calls for. I did, and I’m doing better than ever.
94
@TurandotNeverSleeps I am a geriatric neuropsychologist who specializes in the diagnosis of dementia in older adults. I have a website and it is fairly easy for patients who have been referred for testing to look me up and check out my credentials. I am surprised by the number of patients who do not bother to do that. They are given a list of three names and they assume we are all alike (we are not). If I do not answer the telephone immediately (because I'm with a patient), they simply call the next person on the list until they find someone who is able answer immediately (usually someone who is not busy with patients). People are responsible for doing their own due diligence, yet so often their only criteria for choosing a neuropsychologist who will be assessing them for a potentially life-changing disease is that they answered the phone first! Information is readily available if people will take the time to look. I empathize with your discomfort. That was clearly the wrong referral for you.
57
@TurandotNeverSleeps And if you enter a clinical setting and sense something amiss or out of normal, walk away and start over with a different clinician. My father in law had diagnosed AD; we needed a second medical opinion before the court would assign guardianship over his affairs. I sat in one exam room and listened through paper thin walls while another elderly neurologist tested my father-in-law for dementia. I’ve heard Three Stooges episodes that made more sense and yet, the neurologist only noted mild impairment after that “exam.”
After reading this article, I plan to schedule the big four-hour test battery as a baseline for my only daughter to have something to work with if/when my cognition begins to fail. The least I can do.
4
Don't correct me if you think I'm wrong. I was diagnosed with the APOE4 variant a couple of years ago. My understanding (AGAIN, DON"T CORRECT ME IF I'M WRONG) is that's the one that may lead to early onset dementia. My sister, who was 2 years older than I, had early onset Alzheimer's and died a few years ago. My brother has dementia and I am his guardian. I, on the other hand at 75 (76 in a couple of months...couple meaning 2) and I am working full time and notice no signs of decline.
However, if I do see a decline, I know I will end it. I will not go through what my family member are/have going/gone through.
Although I know I have that gene and I remain untroubled by the knowledge.
60
@Riley while many say they will "end it" when dementia sets in, typically that conviction vanishes as other symptoms appear.
5
@Riley The APOE4 variant is associated with "regular" old age Alzheimers. Early onset forms are due to different gene mutations with stronger, more certain effects. APOE4 increases your chances but isn't a sure thing.
6
I understand that yet I would end things pretty early on...I sure don't want to watch myself disappear.
3
My mother had Alzheimer's. My dog was diagnosed with tapeworms around the same time that my mom's Alzheimer's diagnosis was made. I even wrote a book, detailing our travails, called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." A few months after my mom died, (at 94) I tutored at a tutoring center, and I told the 9 year old child whom I was tutoring, that I almost put in the password that we use at home, rather than the password here at work, when I was signing in on the computer. She said, "We all do that." At 9, she wasn't worried about getting Alzheimer's. (I guess she had a password for her home computer and one at school. It's a different world, isn't it? I grew up BC-Before Computers.) Even if current recommendations to stay active physically and mentally, to engage in social activities, etc., don't stave off Alzheimer's, I enjoy those activities for the here and now. If several decades from now I get the disease, and I meet someone whom I knew in my past but I don't recognize them, I'll just view it as making a new friend.
18
Having seen first hand what dementia does to the person and all loved ones, I agree that we need a humane assisted suicide option. Not everyone will choose to take advantage of it but we shouldn’t deny that option to those who want it.
416
Until there is a cure the only realistic solution for patients and families is physician assisted suicide while the patient is aware enough to sanction the act and say their farewells to loved ones. We are coming close to that in Canada.
294
Memory loss shouldn’t be conflated with quality-of-life since the afflicted individual may remain blissfully happy. It seems like assisted suicide is sometimes contemplated more for the benefit of the survivors, rather than the dementia-inflicted individual.
7
You’ve only to read the many comments here to see how destructive this disease is for those in the position of caring. Alzheimer’s not only hijacks the mind but also the overall quality of life for family in that caring role. If I can possibly achieve it, if necessary, I will find a way out in a timely fashion so that my family’s life is not ruined - because it will be otherwise.
40
@Kevinlarson
retired AMA attorney F/71
And oh so long a way to go!
I do not foresee Canada getting to where Swiss law has been from the writing of "individual autonomy" into its constitution.
U.S. states that have very very tightly limited assisted-death laws cannot even get to "Yes" decisions for self-evident suffering, e.g., 60-something people with established diagnoses like Parkinson's or MS. And the requirement in most states law to be within the last six months of life with a cancer Dx is cruel.
Keep up your membership in DIGNITAS and understand that Swiss law welcomes all comers, worldwide, but each must be mentally competent to consent to the assisted-death and able to drink the juice. That is why I go Spring 2023 or sooner to miss my hard-wired AD DNA on my father's side for late-onset of the 14-year arc of awful.
11
This is a thorough and thoughtful piece. It touches on nearly every aspect of the experience and what we can do to prevent it. But it misses one crucial piece - inviting every single person who is worried / afraid of getting this to fight to change our care system. Some of the effects we see in long-term care settings are iatrogenic - caused not by the symptoms, but by the conditions of the care itself. What if we didn't have to fear that dementia would cause emotional and financial bankruptcy for families? What if we knew the caregivers we come to rely on earned a living wage and had access to healthcare themselves so that they could stay steadily by our side? I suggest that we fear the conditions of care as much as the disease...
334
My highly intelligent dad developed Alzheimer's in his early 80's and eventually died from it. In my mid-fifties, I sensed a decline in my ability to recall names and numbers. I passed the cognitive tests at the neurologist, but was sure that I was also slipping into Alzheimer's.
I was wrong.
I had a B-12 deficiency that was easily and cheaply fixed, and resulted in a return of my ability to recall names and numbers. So if you feel yourself slipping mentally, don't ignore it. At least get your vitamin levels and other physical problems checked. Not all memory problems are permanent - if you get them diagnosed.
228
@DWS,
You bring up an excellent point. About 1 in 3 elderly, and 1 in 6 in the general population who eat meat, are B12 deficient. The symptoms range from peripheral tingling and neuropathy to dementia and even death. And the fix is simple: take a supplement. Since so many people suffer from this, I don’t know why doctors don’t routinely check for B12 levels. Because some of the symptoms are irreversible by the time a deficiency is discovered.
I eat whole plant foods, and I’ve learned that I need to take a B12 supplement. But I’ve also learned that so do many, many other individuals.
42
@Dr. J - I can personally confirm the support that B-12 supplementation offers.
26
@DWS Hi Dr. J - I agree about the need for routine screening as it is so cheap and, in my case, low B-12 was causing me significant problems.
I did want to point out that, if a B12 deficiency is found, sometimes a month or two of injections are required before just going on daily oral supplements. in other words, while the cure is cheap and relatively painless, it can't always be self-diagnosed and self-administered.
25
Thanks so much for this article. My mother just died of end-stage AD at 93 and my sister and I are still recovering from the last 5 years of caregiving. And my husband's mother also died after 10 years of AD. Do we want testing? No. Do we want to put ourselves and our children through caring for us as our brains die? No. Can we afford long term health insurance? Not now as we are in our 60's. I wish that we had a national health care system that helps families pay for dementia care. My mother had saved her money and finally paid off her mortgage. But she had not transferred her assets to us, her daughters. So in 3 1/2 years - when our mother needed to receive institutional care - we had to spend away her savings. Assisted Living in Massachusetts cost us $7,000 a month and the last 9 months in a nursing home were $14,000 a month. Her care was good. What about elders on Medicaid? What dementia care options are open to them? Health Care Reform must address the years of dementia care and help with end of life decisions if people choose not to wait for end stage dementia to run its course.
266
You raise a very good point. Family members facing the need to put a loved one in assisted living or a nursing home should consult with an attorney who can provide advice on how to legally perform asset transfers, etc. Some things should be done while the afflicted person is still competent to sign documents, such as vehicle title.
34
@Susan - If the person is transferring assets in order to be eligible for Medicaid to pay for the institutional care, I question the morality of that. There are so many people in legitimate need of scarce Medicaid dollars that those who CAN pay for their care, should.
And fwiw, there's a five year look-back period so that if you've transferred your assets within the previous five years, the state can claw those assets back. And then, in some states, like mine (red states), if there's a well spouse at the time an ill spouse must be put in a nursing home, the well spouse is allowed to stay in the family home, but the minute the ill spouse dies, the state immediately slaps a lien on the family home, for the full amount the state spent on Medicaid. I got a lien for $232,000.
57
Your second paragraph exemplifies why it’s important to get professional advice and plan ahead. I was not suggesting whether or not it’s ethical. People can disagree on that.
18
If only health insurance included long-term care in the U.S. like it does in almost every other developed nation. We need it.
152
@Mopar Medicaid kind of/sort of provides long term care. Here in Florida, the legislature is looking for ways to cut that spending.
11
@David Martin
Florida, the retirement state of all places.
5
Now, let's start talking about END OF LIFE options. And, I'm not talking about options available ONLY for those w/ terminal illnesses. I'm 60 and was diagnosed with multiple sclerosis when I was 40. I can feel my cognitive decline occurring as the years pass. I want to be able to CHOOSE when my life ends. I'm not depressed. Actually, I'm a pretty happy person. I'm doing everything I can to slow down the progression of my MS, but when it gets to be to much for ME (and my family), I want to have CHOICES beyond nursing home care or burdening my family with trying to take care of me. I want solid end of life choices. And, I don't want to have to move to Switzerland to take advantage of them.
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@Nancy
Exactly correct. The tests are not definitive and there is no cure, but this is the only aspect that can give people control and at least let them know they have an option.
We're all going to die, it's just a question of when and how. And while others may feel differently, a nursing home or other commercial care facility is not something I would ever want.
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@Nancy
retired attorney F/71
As caregiver for a grandmother and my father in their 14-year arc of Alzheimer's, decision making is easy for me: I got apoE allele test done by a client lab in MA decades ago. I get Invitae's AD panel results this week.
My work in genetics and genomics innovation with clients like Genomic Health and Invitae over the last 20+ years got me tuned in to my likely hard-wired DNA.
Created a plain-English one-page POLST for my father. His Alzheimer's ended with a very good death, no lingering, because of prior agreement with Tidewell Hospice on inpatient morphine&methadone by IV immediately on his transfer there. My refuse-all-diagnostics and treatments advance directive for EMS and MDs is simple. What's left? DO USE M&M--ComfortCareOnly.
Dr V had advance notice from me to build trust. He honored this unique directive and all went well at Tidewell. By phone: "Your father has lots of open likely painful cancer sores on his head and we can provide a quiet death in 3 hours to 3 days with IV morphine + methadone." I reply: "Yes." Quiet death came four days later. 2013.
Same regimen is now established at Sarasota Memorial Hospital. My initial handwritten directives are now used as models for POA holders guided by RNs with Witnesses and Notaries 24/7 onsite.
This week I choose: April 2023 or sooner I fly one-way to Zurich DIGNITAS while still compos mentis. To drink the juice. Gift $Ms. Skip the 14-years over the "cliff."
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@Nancy
Preventing that will be the next thing the Supreme Court goes after. Remember to some suicide is a sin. So much for religious freedom for the rest of us who do not agree.
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Though it is never easy to put oneself in another's situation:
If I was down to "5%" of what I was before, I would certainly be ready to pass on to the next adventure.
Can I sign a pre-nup for that?
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@A You can write an advanced care directive saying that after you reach a certain functional level (which you can define) you don't want flue or pneumonia vaccinations, or antibiotics if you get one of the many infections elders often get. Discuss this with your family so that your intentions are clear.
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@R. Bartlett Things got weird when I discussed her End-of-Life directive with my mom. It listed a bunch of conditions-- e.g., inability to dress oneself and incontinence-- and asked the owner to choose which conditions were intolerable alone or in combination. Mom said incontinence would be intolerable. Seriously? Choose death rather than Depends? When I asked her to rethink each option and combo in light of her having a grandchild, she backed off most of the selections.
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@R. Bartlett - Good points. It's said that pneumonia is the Alzheimer's patient's friend.
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I had commercial genetic testing done by one of the major companies. I know that the all of the results may not be completely accurate, although the the Ancestry results were very accurate, I have to say.
I was found to lack the ε4 variant in the APOE gene for Alzheimer's Disease. Since I have no family history I was not 'worried' about Alzheimer's Disease from first hand experience with a relative. However, the results of this test are somewhat comforting to me.
My husband is now showing the early signs of the vascular dementia that is prevalent in his family history, however. And I have begun to educate myself about what clearly lies ahead for both of us.
Fortunately, with the urging of our adults sons, we now live in Independent Living in a Senior Living Community that also has Assisted Living AND Memory Care. We are surrounded by expert staff and an entire community that can provide us with support and tangible assistance in the years ahead. And both Home Health Care, and the Memory Care Unit are close at hand.
My heart goes out to those who care for family members afflicted by any form of dementia. The emotional pain of watching a loved one change and lose their individual personality is indescribable. And the financial and physical burden can destroy caretakers' lives.
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Why doesn’t this article share with readers the very practical work being done by Dale Bredesen, Ph.D, MD at Apollo Heath (where they have reversed and/or arrested MCI and ALZ in several hundred patients using the Bredesen Protocol) and by Dean and Ayesha Sherzai, MD at Loma Linda University (with a similar program)? There is a growing body of evidence that specific lifestyle interventions, based on the identified underlying cause of the condition, can significantly affect the course of this disease.
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@E. Adams-Smith
Yes! I am in early stages and have been following the Bredesen protocol as well as other supporting therapies. There is hope In this direction. I feel my quality of life is and will continue to be better for all we (my supporters and I) are doing. Hopefully others will benefit as well as experimentation and research continue.
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@E. Adams-Smith
I agree. I am following the protocol in "The End of Alzeihmer's". book by Bredesen and i am amazed that so few articles on alzeihmer's even mention it. I am feeling better and heartened by his stories of people who have lost jobs because of memory losses but have been able to go back to work after following his protocol.
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There are two main issues. First, there are no tests that definitively rule in or rule out Alzheimer's. Second, there are no treatments that affect the course of the disease other than what we should be doing already such as exercising, eating a good diet, and controlling risk factors such as smoking and high blood pressure.
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@MM While this is all well and good, you can have no risk factors and still end up with AD. My mother exercised all of her life, was thin and very healthy with a good social support network. Then at age 89, we began to notice some changes in her cognition. Five years later, she's confused and sometimes combative. She has been living with my sister during this time and we are looking forward to a visit from her doctor today, in the hopes that she will qualify for hospice. My sister is adamant about keeping our mother in her home, and hospice can provide her with a lot of help and emotional support.
As a retired RN who cared for people with dementia for the final 20 years of my career, I have learned that even the healthiest, risk free person can suffer from dementia if they live much past 85.
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@sohy Living to 89 with no issues seems to be a result of your mother's very healthy living. I mean, 89!!!!! If I make it that far, and then begin to decline, I will consider myself lucky. By 89 I will have been able to see my children have grandchildren and watch them grow. If I start a rapid decline then, I 'm good to go and having had a good long run!
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My world, my life. I took the test, and knowing what we know, it did NOTHING to allay my fears - the disease, it's variations, it all feels capricious to this Capricorn. Perhaps fortunately, right now I am too busy, caring for my Mom and HER dementia to wonder too long about my own prospects.
The only advice I have for all of us struggling with this terrible disease and it's variations is Matthew 6:34: "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."
Good luck Caregivers and Victims.
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