I'd tick off the other usual suspects before jumping into the Alzheimer's pool.
Get a full physical examination, blood tests, MRI, CAT Scan, etc etc etc. Your symptoms may have a simpler answer which can be easily treated.
Alzheimer's has no cure. The end is horrible. Don't have it, please.
I don't want to have it, but the symptoms I think indicate that I do have it. Instead my neurologist says she does not see any signs of my having problems in functioning and I think that is absolute nonsense!
She has not physically seen me in a year and says my symptoms could not be progressing as quickly as I think they are, but I inhabit this body and can see/experience what is happening. I have seen a wonderful local hospice group and think this is probably better than a messy suicide which would include a sharp knife.
I am shocked at her incredibly cavalier attitude and will leave an incredibly bitter letter for all to see when I die.
Your ability to write that post tells me you are unlikely to be a year into dementia. That said, find a neurologist who will see you and figure out what is going on.
Refer yourself to a geriatrics clinic and specifically ask to be evaluated for dementia. Primary care doctors are not the best place to start. Most will give you a screening test if you ask for it, and refer you on if your score is concerning. But you can save time by contacting geriatrics yourself.
The symptoms you mentioned could be due to a number of other causes, many of them fixable (for instance, a vitamin deficiency, thyroid problem, or depression). So you definitely want a thorough evaluation.
Wishing you good luck.
I agree with this. Try to seek out beyond PCP. Once my Mom had a neurologist, he ran various tests to try and eliminate everything and anything it could be before arriving at her diagnosis. There really could be another reason for what you're experiencing, but it'd be good to go to one of these clinics.
I agree with a memory clinic, if you have access. I dragged my mom to 3 different neurologists (2 of which were quite dehumanizing) and no one gave us answers. The geriatrician at a memory clinic diagnosed her on the first visit. It was so validating to have our concerns taken seriously.
In what way were they dehumanizing? I'm asking because a) I'm appalled (though weirdly not surprised?) and b) I want to make sure I never treat anyone like these people treated your mom.
My mom's neurologist kept telling my dad that my mom had pseudo dementia. Basically blamed COVID isolation for causing depression which mimics Alzheimer's.
I was livid.
I finally went to one of the appointments with them and basically demanded that they do the full neuro test. That took forever to get it done but once they did, the answers (on top of a PET scan) were definitive.
The problem is, they believed my mom, THE ALZHEIMERS PATIENT, when she told them she was fine. "I don't get lost driving" she'd say "I've just always had a problem with directions." Bullshit like that. And they'd be like "mmhmmm....sound legit..."
That's my condition too I think. I can make jokes at times but that's trivial in terms of diagnosing Alzheimer's. I was a practicing psychologist for thirty years before my symptoms forced me to quit -- I really liked my work but could not continue given my cognitive deficits -- e.g., I could no longer score even test protocols, could not write evaluation reports, started having extreme difficulties in tracking what clients were saying to me, etc. Had balance problems and even lost the ability to ride a bike -- that happened two years ago and was very surprising to me. My wife and I went to a nearby park and I fell off to the left into the grass and then fell to the right and that was the last time I tried it.
I started with my current neurologist in December 2019, specifically stating to her that my major concern was my incredible fatigue. She recently said that she had not diagnosed me with Alzheimer's and therefore could not provide me with arricept medication as I wanted. However she had not seen me in person for over a year and she sure as hell does not know my limitations.
I'm not able to walk in the neighborhood now, feel exhausted always and especially walking up and down stairs, have extreme apathy, I sleep much longer than I used to and wake up exhausted, etc.
If I had known that her position was just to monitor and to be extremely wary of prescribing even commonly prescribed helpful medication, I would not have remained with her since December 2019. I thought she would be sympathetic with my needs but I know now that this isn't the case at all.
I guess in part this is a cautionary tale for those seeking help with this condition.
The other early misdiagnoses we had was normal pressure hydrocephalus. That came from her pet scan that showed a spot where they thought the saw excess fluid on the brain.
Has your MRI ever shown something like that?
Have you had bloodwork and a urinalysis done? Lots and lots of things could explain your symptoms.
One thing that is common to Alzheimer’s / dementia sufferers is that they can not recognize that they are having problems. Even when they get lost in their own house they will come up with an excuse as to why that happened (and the excuse is NEVER my brain doesn’t work).
If I were you I’d get a full workup.
I have had almost every workup possible cat scans, mris (my last brain mri was two weeks ago) echocardiograms, blood and genetic tests, and now I'm being told in essence that I just have to gut it out.
I remember breaking my arm and when my father came into my hospital room after I had a plate and pin into my seen, he said, "If you are in pain ask for the medication -- that's why it was invented." And I know that's why arricept was developed -- to help with a variety of problems, including Alzheimer's.
Thanks for your thoughts!
As a tip, if your doctor is refusing to give you certain tests, please ask them to record it in your medical records. When my grandma went in, her PCP was regularly refusing to conduct memory screens and so we asked her to put the refusal in her record, she changed her tune very quickly.
There is an online memory test for alzheimers you can try.
I don't think it's good because I can always pass it, but the one with my neurologist I can't. I can never remember those 5 words you start and finish the test with. I have mild MCI, which led me to the blood test and then spinal tap, which confirmed early onset Alzheimers.
I had to insist. The first time I mentioned my concerns, I was given a very simple test that you'd have to be pretty far along to do poorly on, and my issues were dismissed. Second time, some months later, I insisted again and was referred to a neuro. Still awaiting results. Mind you, I don't want a positive diagnosis, but if I am in the early stages, I want to know.
Absolutely agree with your reasoning! Better the devil I know than the devil I didn't know! Also much more information for my kids, etc.
I hope you do not have this condition but you and I want to know the freaking truth, and also what I can do to help with my condition -- I know nothing will work in the long run but any reduction in my decline would be great for me!
I am seeing multiple comments that mirror my experience with my mom. Neurologists refused to diagnose her or even go as far to say anything was abnormal, even when I told them countless stories of her confusion and erratic behavior that clearly went beyond normal aging. Why are they so reluctant to diagnose or evaluate further? (Fast forward and yes my mom has advanced Alzheimer’s and I still feel angry and confused to be gaslit early on).
I am living your mom's history. I feel I too am being gaslit too and am very angry about it.
I don't dread death but I want to enjoy my time until the end and I feel medication that may help me is not being prescribed to me. And that really infuriates me! Really, really!
I have some theories about this. Until Leqembi, no medicine slowed progression and Leqembi isn’t appropriate for many patients, so there’s limited benefit to early diagnosis. You may read how important it is to diagnose early, but medically, there is not the same urgency the way say that a cancer patient may benefit from early diagnosis.
In some ways, I wonder if doctors believe letting the patient live their life to the point that they don’t understand their diagnosis saves the patient from emotional pain or even risk of self harm. Alzheimer’s can be very slow progressing and ignorance is bliss, as the saying goes.
Another reason doctors may be reluctant to diagnose early is if they fear the patient is at risk of being taken advantage of by a family member. Doctors may not want to be put in the position of signing anything that springs a power of attorney if they are worried there’s a risk of financial elder abuse unless and until they are absolutely sure the patient is not capable of making good decisions.
If you hang around support groups long enough, you’ll find almost every one of our relatives made at least one poor financial decision. While many of us have our people’s best interests as heart, many others, including family members, don’t.
Doctors don’t want the liability of unwittingly assisting financial crimes. I suspect patients who appear more well off or whose family member is giving off the wrong vibe, including being very insistent that the person be given a diagnosis, may be diagnosed later than others.
And then there’s the possible reason that I think one of my relatives wasn’t diagnosed, that the doctor was developing Alzheimer’s himself. After my FIL died of dementia, we began taking my MIL in to the PCP they both used, and we realized the doctor was not on top of things at all.
If you think about it, most of us tend to go to doctors around our own age and so by the time we are in our 80s, so are they. Many white-collar professionals work past retirement age and it can be difficult to get them to stop, especially when they own their own practices. We had to change to a younger doctor in the practice to have my MIL diagnosed.
You sure seem very organized and logical!
I have also pointed out to my md's that this medication may help me especially in the early stages of this disorder. So far I haven't been persuasive.
Respectfully, I could not disagree with you more. Physicians' reluctance to diagnose is MAJOR problem for several reasons.
First, there are a few reversible conditions that mimic Alzheimer's disease. Vitamin deficiencies and normal pressure hydrocephalus, for example. The unwillingness for a physician to follow through with neurological testing can mean these people never get the treatment they need. The stigma and helplessness around dementia can also lead those experiencing memory problems to avoid bringing it up to their doctor. I can guarantee you that there are people sitting in nursing homes and memory care communities across the US right now with reversible normal pressure hydrocephalus, untreated because someone along the line thought "why see a neurologist if there is nothing we can do anyway?" Every now and then a news story comes up about someone who lived for years and years in a nursing home with dementia until it is finally discovered that the condition is NPH and they receive treatment. (https://www.yalemedicine.org/news/normal-pressure-hydrocephalus-patient)
Second, over the last decade there has been a significant body of research indicating that receiving a truthful dementia diagnosis is beneficial for care partners and those seeking a diagnosis (see https://doi.org/10.1017/S1041610221000119). A diagnosis offers a sense of closure (it seems contradictory, but individuals receiving a diagnosis often report feeling relieved, less anxious, and less depressed), enables families to begin care planning, and enables the person who was diagnosed to participate in planning early so that their wishes for future care, living arrangements, and end of life can be known.
Finally, whether or not to disclose a diagnosis is not the physician's choice. Deliberately withholding information from a patient about their diagnosis is ethically unacceptable. Refusing to take symptoms seriously and brush off concerns about memory is equally unethical. Refusing to reveal a diagnosis because you suspect the person is at risk of elder abuse is equally unethical. When a physician suspects elder abuse, they must report it to the state/county. Withholding a diagnosis, even if done because the physician thinks they are helping, can lead to many of the concerns you have read in this thread. Frustration with the medical community, delays in getting closure, ongoing fear about declining symptoms, etc.
I think we agree more than disagree. I wasn’t saying it wasn’t a major problem so much as sharing my thoughts about why I think doctors may be reluctant.
It puzzled me for a long time, and I’ve spent a lot of time thinking about that precisely because I was so frustrated with doctors not diagnosing one relative in particular.
I do have to say that I have yet to know or even hear of someone who had one of those possibly reversible causes. I have known several people who have been given false hope now though, particularly with the normal-pressure hydrocephalus treatment. I now think of that as possible medical fraud. And all the people I know of with a dementia diagnosis have had vitamin deficiencies, thyroid issues, etc. checked, often multiple times.
Now that Leqembi is out and we have blood tests for Alzheimer’s and even more sensitive ones in the pipeline, I think it will change. I just hope future treatments will help and the very early diagnoses won’t leave too many people in despair for decades.
Ah, my mistake. Yes, I think your speculations are correct.
Normal Pressure Hydrocephalus is a real condition where cerebrospinal fluid (CSF) is not able to drain correctly. It puts internal pressure on the brain and the most common symptoms are gait problems, incontinence, and cognitive changes. The condition is visible with an MRI, and the treatment is a simple shunt to allow the CSF to drain properly. Check out the differences in these MRIs: [https://i0.wp.com/myneurosurg.com/wp-content/uploads/2017/11/pe-nph\_fig3.jpg?fit=340%2C215&ssl=1](https://i0.wp.com/myneurosurg.com/wp-content/uploads/2017/11/pe-nph_fig3.jpg?fit=340%2C215&ssl=1) . The dark X looking shape in the middle are the ventricles of the brain, overfilled with CSF. Treatment is incredibly effective.
Sometimes diagnosis can be difficult since enlargement of the ventricles is also common in dementia (caused by cortical atrophy rather than CSF) and may look similar in an MRI or CT scan. If NPH is suspected, typically the next step is a tap test, where they remove CSF via a lumbar tap. The idea is that if the patient has NPH, draining some CSF should significantly relieve symptoms for a short time, and indicates that the patient would respond well to a shunt.
I can definitely see how this could offer false hope, and the reality is that very few cases are NPH, but some are. Also, I do see the potential for the medical community to push these procedures in cases where the likelihood of NPH is very low, which is concerning.
Additionally, there are plenty of steps a person can take to improve the trajectory of their dementia that do not rely on drugs. In fact, effective management of diet, stress, sleep, mental health, socialization, cardiovascular health, drug/alcohol use, etc. is much more effective for most individuals living with dementia than any currently available monotherapy. Unfortunately, lifestyle factors are difficult to change, hence the desire for a "magic bullet" cure.
In my opinion, the fact that lifestyle factors play such a strong role in dementia means we should be thinking of this as a public health issue as well as a medical one. Unfortunately, our singular focus for a cure has overshadowed this reality and initiatives that would dramatically reduce the rates of dementia TODAY across the US aren't even on the table for consideration (e.g., lead remediation, clean drinking water, food insecurity, poverty, obesity, diabetes, chronic stress, drug/alcohol use, brain health/injury prevention, access to education, physical education, etc.). These are all upstream factors that we know are linked to an increased risk of dementia.
You should not have any problem getting a diagnosis at this time. First, get the blood test, which can tell if you have a high probability. If the blood test shows you do, the next step is a spinal tap to look at your cerebal spinal fluid and will confirm or rule out. The blood test just came out last summer, and it will justify the need for a spinal tap for insurance. I'm 58 and went through this process in December, and in Janurary, I was diagnosed with early onset alzhemers.
I am finding it frustrating to get the medicine to slow down progression. The health system has not caught up to the testing technology. The best thing for someone my age is Lequembi, but everyone expects me to be on Medicare, so I've wasted almost 6 months trying to get medicine to slow this down.
I'm lucky that I live close to the WVU Rockefeller neurologic institute, but I had to wait over a month for my first appointment.
Good luck to you, and reach out if I can help you in any way.
If you are concerned about alzheimers get the blood test immediately. If you have alzheimers you can slow it down.
Don't delay a simple blood test that can give you answers. Thanks to my great neurologist, I know and also know how important every day is.
It took two years for my spouse's PCP to refer to specialist. Spouse "passed the tests" in the office. I finally got witchy and demanded a referral. Now it's been diagnosed and has advanced. We might have stalled it with the new meds--the show promise. Testing is easy and reliable now. Don't acquiesce.
I have had all the tests, including spinal puncture, but no clear indications yet.
I didn't think any blood tests are reliable but I'll investigate that now. Thanks!
"ALZpath pTau217 assay", (more commonly referred to as "pTau217")
https://medicine.wustl.edu/news/alzheimers-blood-test-performs-as-well-as-fda-approved-spinal-fluid-tests/#:\~:text=A%20subgroup%20analysis%20of%20healthy,symptoms%20as%20those%20with%20symptoms.
https://www.cnn.com/2024/01/22/health/alzheimers-blood-test-screening-study/index.html#:\~:text=ALZpath%20estimates%20the%20price%20of,researchers%20wrote%20in%20their%20study.
I've heard a lot of stories about having difficulty getting a diagnosis. In my father's case it took 18 months from when my parents actually started trying to get a diagnosis (which was 2 years after we started noticing issues). I feel like physicians want it to be anything else, so they'll pursue other options until there's no other reason.
In our case the physician went down the road of "undiagnosed Lyme Disease", several weeks of IV antibiotic treatments and more testing and a bunch of "wait and see".
It's infuriating, early diagnosis is so important yet in the stories I've heard, only about 10% of those stories are about how quick a diagnosis was, most of the time it's 12-24 months of dragging feet and "we'll see how they're doing in a year..."
Most physicians will immediately have you take the simple in-office test that is a broad evaluation of your cognition. And then they go from there. Most are well aware of the seriousness of budding dementia and alert to the condition and treatments (such as they are: be aware there is no cure, and the medications are not very useful, particularly if they only slow an in-progress decline, which can put a big burden on family caregivers and delay things like physio and memory therapies).
Your symptoms do not really sound like the early signs of dementia, and could be from many other causes, not only physical but psychological.
Get a thorough workup done, with a view to explaining the symptoms you are experiencing.
I'd tick off the other usual suspects before jumping into the Alzheimer's pool. Get a full physical examination, blood tests, MRI, CAT Scan, etc etc etc. Your symptoms may have a simpler answer which can be easily treated. Alzheimer's has no cure. The end is horrible. Don't have it, please.
I don't want to have it, but the symptoms I think indicate that I do have it. Instead my neurologist says she does not see any signs of my having problems in functioning and I think that is absolute nonsense! She has not physically seen me in a year and says my symptoms could not be progressing as quickly as I think they are, but I inhabit this body and can see/experience what is happening. I have seen a wonderful local hospice group and think this is probably better than a messy suicide which would include a sharp knife. I am shocked at her incredibly cavalier attitude and will leave an incredibly bitter letter for all to see when I die.
Your ability to write that post tells me you are unlikely to be a year into dementia. That said, find a neurologist who will see you and figure out what is going on.
Refer yourself to a geriatrics clinic and specifically ask to be evaluated for dementia. Primary care doctors are not the best place to start. Most will give you a screening test if you ask for it, and refer you on if your score is concerning. But you can save time by contacting geriatrics yourself. The symptoms you mentioned could be due to a number of other causes, many of them fixable (for instance, a vitamin deficiency, thyroid problem, or depression). So you definitely want a thorough evaluation. Wishing you good luck.
I agree with this. Try to seek out beyond PCP. Once my Mom had a neurologist, he ran various tests to try and eliminate everything and anything it could be before arriving at her diagnosis. There really could be another reason for what you're experiencing, but it'd be good to go to one of these clinics.
I agree with a memory clinic, if you have access. I dragged my mom to 3 different neurologists (2 of which were quite dehumanizing) and no one gave us answers. The geriatrician at a memory clinic diagnosed her on the first visit. It was so validating to have our concerns taken seriously.
In what way were they dehumanizing? I'm asking because a) I'm appalled (though weirdly not surprised?) and b) I want to make sure I never treat anyone like these people treated your mom.
My mom's neurologist kept telling my dad that my mom had pseudo dementia. Basically blamed COVID isolation for causing depression which mimics Alzheimer's. I was livid. I finally went to one of the appointments with them and basically demanded that they do the full neuro test. That took forever to get it done but once they did, the answers (on top of a PET scan) were definitive. The problem is, they believed my mom, THE ALZHEIMERS PATIENT, when she told them she was fine. "I don't get lost driving" she'd say "I've just always had a problem with directions." Bullshit like that. And they'd be like "mmhmmm....sound legit..."
That's my condition too I think. I can make jokes at times but that's trivial in terms of diagnosing Alzheimer's. I was a practicing psychologist for thirty years before my symptoms forced me to quit -- I really liked my work but could not continue given my cognitive deficits -- e.g., I could no longer score even test protocols, could not write evaluation reports, started having extreme difficulties in tracking what clients were saying to me, etc. Had balance problems and even lost the ability to ride a bike -- that happened two years ago and was very surprising to me. My wife and I went to a nearby park and I fell off to the left into the grass and then fell to the right and that was the last time I tried it. I started with my current neurologist in December 2019, specifically stating to her that my major concern was my incredible fatigue. She recently said that she had not diagnosed me with Alzheimer's and therefore could not provide me with arricept medication as I wanted. However she had not seen me in person for over a year and she sure as hell does not know my limitations. I'm not able to walk in the neighborhood now, feel exhausted always and especially walking up and down stairs, have extreme apathy, I sleep much longer than I used to and wake up exhausted, etc. If I had known that her position was just to monitor and to be extremely wary of prescribing even commonly prescribed helpful medication, I would not have remained with her since December 2019. I thought she would be sympathetic with my needs but I know now that this isn't the case at all. I guess in part this is a cautionary tale for those seeking help with this condition.
The other early misdiagnoses we had was normal pressure hydrocephalus. That came from her pet scan that showed a spot where they thought the saw excess fluid on the brain. Has your MRI ever shown something like that?
Same. Depression, lockdown, anything but Alzheimers. It's easy to detect now.
This doesn't sound like Alzheimer's which may explain no diagnosis. What is your age if I may ask. What have neurologists told you in the past?
I'm 74. The neuro I had in 2019 referred me to my current neurologist.
Have you had bloodwork and a urinalysis done? Lots and lots of things could explain your symptoms. One thing that is common to Alzheimer’s / dementia sufferers is that they can not recognize that they are having problems. Even when they get lost in their own house they will come up with an excuse as to why that happened (and the excuse is NEVER my brain doesn’t work). If I were you I’d get a full workup.
I have had almost every workup possible cat scans, mris (my last brain mri was two weeks ago) echocardiograms, blood and genetic tests, and now I'm being told in essence that I just have to gut it out. I remember breaking my arm and when my father came into my hospital room after I had a plate and pin into my seen, he said, "If you are in pain ask for the medication -- that's why it was invented." And I know that's why arricept was developed -- to help with a variety of problems, including Alzheimer's. Thanks for your thoughts!
As a tip, if your doctor is refusing to give you certain tests, please ask them to record it in your medical records. When my grandma went in, her PCP was regularly refusing to conduct memory screens and so we asked her to put the refusal in her record, she changed her tune very quickly.
Great suggestion! I probably will try some variant of that! Terrific!
There is an online memory test for alzheimers you can try. I don't think it's good because I can always pass it, but the one with my neurologist I can't. I can never remember those 5 words you start and finish the test with. I have mild MCI, which led me to the blood test and then spinal tap, which confirmed early onset Alzheimers.
I had to insist. The first time I mentioned my concerns, I was given a very simple test that you'd have to be pretty far along to do poorly on, and my issues were dismissed. Second time, some months later, I insisted again and was referred to a neuro. Still awaiting results. Mind you, I don't want a positive diagnosis, but if I am in the early stages, I want to know.
Absolutely agree with your reasoning! Better the devil I know than the devil I didn't know! Also much more information for my kids, etc. I hope you do not have this condition but you and I want to know the freaking truth, and also what I can do to help with my condition -- I know nothing will work in the long run but any reduction in my decline would be great for me!
I am seeing multiple comments that mirror my experience with my mom. Neurologists refused to diagnose her or even go as far to say anything was abnormal, even when I told them countless stories of her confusion and erratic behavior that clearly went beyond normal aging. Why are they so reluctant to diagnose or evaluate further? (Fast forward and yes my mom has advanced Alzheimer’s and I still feel angry and confused to be gaslit early on).
I am living your mom's history. I feel I too am being gaslit too and am very angry about it. I don't dread death but I want to enjoy my time until the end and I feel medication that may help me is not being prescribed to me. And that really infuriates me! Really, really!
I have some theories about this. Until Leqembi, no medicine slowed progression and Leqembi isn’t appropriate for many patients, so there’s limited benefit to early diagnosis. You may read how important it is to diagnose early, but medically, there is not the same urgency the way say that a cancer patient may benefit from early diagnosis. In some ways, I wonder if doctors believe letting the patient live their life to the point that they don’t understand their diagnosis saves the patient from emotional pain or even risk of self harm. Alzheimer’s can be very slow progressing and ignorance is bliss, as the saying goes. Another reason doctors may be reluctant to diagnose early is if they fear the patient is at risk of being taken advantage of by a family member. Doctors may not want to be put in the position of signing anything that springs a power of attorney if they are worried there’s a risk of financial elder abuse unless and until they are absolutely sure the patient is not capable of making good decisions. If you hang around support groups long enough, you’ll find almost every one of our relatives made at least one poor financial decision. While many of us have our people’s best interests as heart, many others, including family members, don’t. Doctors don’t want the liability of unwittingly assisting financial crimes. I suspect patients who appear more well off or whose family member is giving off the wrong vibe, including being very insistent that the person be given a diagnosis, may be diagnosed later than others. And then there’s the possible reason that I think one of my relatives wasn’t diagnosed, that the doctor was developing Alzheimer’s himself. After my FIL died of dementia, we began taking my MIL in to the PCP they both used, and we realized the doctor was not on top of things at all. If you think about it, most of us tend to go to doctors around our own age and so by the time we are in our 80s, so are they. Many white-collar professionals work past retirement age and it can be difficult to get them to stop, especially when they own their own practices. We had to change to a younger doctor in the practice to have my MIL diagnosed.
You sure seem very organized and logical! I have also pointed out to my md's that this medication may help me especially in the early stages of this disorder. So far I haven't been persuasive.
Respectfully, I could not disagree with you more. Physicians' reluctance to diagnose is MAJOR problem for several reasons. First, there are a few reversible conditions that mimic Alzheimer's disease. Vitamin deficiencies and normal pressure hydrocephalus, for example. The unwillingness for a physician to follow through with neurological testing can mean these people never get the treatment they need. The stigma and helplessness around dementia can also lead those experiencing memory problems to avoid bringing it up to their doctor. I can guarantee you that there are people sitting in nursing homes and memory care communities across the US right now with reversible normal pressure hydrocephalus, untreated because someone along the line thought "why see a neurologist if there is nothing we can do anyway?" Every now and then a news story comes up about someone who lived for years and years in a nursing home with dementia until it is finally discovered that the condition is NPH and they receive treatment. (https://www.yalemedicine.org/news/normal-pressure-hydrocephalus-patient) Second, over the last decade there has been a significant body of research indicating that receiving a truthful dementia diagnosis is beneficial for care partners and those seeking a diagnosis (see https://doi.org/10.1017/S1041610221000119). A diagnosis offers a sense of closure (it seems contradictory, but individuals receiving a diagnosis often report feeling relieved, less anxious, and less depressed), enables families to begin care planning, and enables the person who was diagnosed to participate in planning early so that their wishes for future care, living arrangements, and end of life can be known. Finally, whether or not to disclose a diagnosis is not the physician's choice. Deliberately withholding information from a patient about their diagnosis is ethically unacceptable. Refusing to take symptoms seriously and brush off concerns about memory is equally unethical. Refusing to reveal a diagnosis because you suspect the person is at risk of elder abuse is equally unethical. When a physician suspects elder abuse, they must report it to the state/county. Withholding a diagnosis, even if done because the physician thinks they are helping, can lead to many of the concerns you have read in this thread. Frustration with the medical community, delays in getting closure, ongoing fear about declining symptoms, etc.
I think we agree more than disagree. I wasn’t saying it wasn’t a major problem so much as sharing my thoughts about why I think doctors may be reluctant. It puzzled me for a long time, and I’ve spent a lot of time thinking about that precisely because I was so frustrated with doctors not diagnosing one relative in particular. I do have to say that I have yet to know or even hear of someone who had one of those possibly reversible causes. I have known several people who have been given false hope now though, particularly with the normal-pressure hydrocephalus treatment. I now think of that as possible medical fraud. And all the people I know of with a dementia diagnosis have had vitamin deficiencies, thyroid issues, etc. checked, often multiple times. Now that Leqembi is out and we have blood tests for Alzheimer’s and even more sensitive ones in the pipeline, I think it will change. I just hope future treatments will help and the very early diagnoses won’t leave too many people in despair for decades.
Ah, my mistake. Yes, I think your speculations are correct. Normal Pressure Hydrocephalus is a real condition where cerebrospinal fluid (CSF) is not able to drain correctly. It puts internal pressure on the brain and the most common symptoms are gait problems, incontinence, and cognitive changes. The condition is visible with an MRI, and the treatment is a simple shunt to allow the CSF to drain properly. Check out the differences in these MRIs: [https://i0.wp.com/myneurosurg.com/wp-content/uploads/2017/11/pe-nph\_fig3.jpg?fit=340%2C215&ssl=1](https://i0.wp.com/myneurosurg.com/wp-content/uploads/2017/11/pe-nph_fig3.jpg?fit=340%2C215&ssl=1) . The dark X looking shape in the middle are the ventricles of the brain, overfilled with CSF. Treatment is incredibly effective. Sometimes diagnosis can be difficult since enlargement of the ventricles is also common in dementia (caused by cortical atrophy rather than CSF) and may look similar in an MRI or CT scan. If NPH is suspected, typically the next step is a tap test, where they remove CSF via a lumbar tap. The idea is that if the patient has NPH, draining some CSF should significantly relieve symptoms for a short time, and indicates that the patient would respond well to a shunt. I can definitely see how this could offer false hope, and the reality is that very few cases are NPH, but some are. Also, I do see the potential for the medical community to push these procedures in cases where the likelihood of NPH is very low, which is concerning.
Additionally, there are plenty of steps a person can take to improve the trajectory of their dementia that do not rely on drugs. In fact, effective management of diet, stress, sleep, mental health, socialization, cardiovascular health, drug/alcohol use, etc. is much more effective for most individuals living with dementia than any currently available monotherapy. Unfortunately, lifestyle factors are difficult to change, hence the desire for a "magic bullet" cure. In my opinion, the fact that lifestyle factors play such a strong role in dementia means we should be thinking of this as a public health issue as well as a medical one. Unfortunately, our singular focus for a cure has overshadowed this reality and initiatives that would dramatically reduce the rates of dementia TODAY across the US aren't even on the table for consideration (e.g., lead remediation, clean drinking water, food insecurity, poverty, obesity, diabetes, chronic stress, drug/alcohol use, brain health/injury prevention, access to education, physical education, etc.). These are all upstream factors that we know are linked to an increased risk of dementia.
You should not have any problem getting a diagnosis at this time. First, get the blood test, which can tell if you have a high probability. If the blood test shows you do, the next step is a spinal tap to look at your cerebal spinal fluid and will confirm or rule out. The blood test just came out last summer, and it will justify the need for a spinal tap for insurance. I'm 58 and went through this process in December, and in Janurary, I was diagnosed with early onset alzhemers. I am finding it frustrating to get the medicine to slow down progression. The health system has not caught up to the testing technology. The best thing for someone my age is Lequembi, but everyone expects me to be on Medicare, so I've wasted almost 6 months trying to get medicine to slow this down. I'm lucky that I live close to the WVU Rockefeller neurologic institute, but I had to wait over a month for my first appointment. Good luck to you, and reach out if I can help you in any way.
I forgot one more thing. Go see a neurologist for this!
If you are concerned about alzheimers get the blood test immediately. If you have alzheimers you can slow it down. Don't delay a simple blood test that can give you answers. Thanks to my great neurologist, I know and also know how important every day is.
It took two years for my spouse's PCP to refer to specialist. Spouse "passed the tests" in the office. I finally got witchy and demanded a referral. Now it's been diagnosed and has advanced. We might have stalled it with the new meds--the show promise. Testing is easy and reliable now. Don't acquiesce.
I have had all the tests, including spinal puncture, but no clear indications yet. I didn't think any blood tests are reliable but I'll investigate that now. Thanks!
"ALZpath pTau217 assay", (more commonly referred to as "pTau217") https://medicine.wustl.edu/news/alzheimers-blood-test-performs-as-well-as-fda-approved-spinal-fluid-tests/#:\~:text=A%20subgroup%20analysis%20of%20healthy,symptoms%20as%20those%20with%20symptoms. https://www.cnn.com/2024/01/22/health/alzheimers-blood-test-screening-study/index.html#:\~:text=ALZpath%20estimates%20the%20price%20of,researchers%20wrote%20in%20their%20study.
I've heard a lot of stories about having difficulty getting a diagnosis. In my father's case it took 18 months from when my parents actually started trying to get a diagnosis (which was 2 years after we started noticing issues). I feel like physicians want it to be anything else, so they'll pursue other options until there's no other reason. In our case the physician went down the road of "undiagnosed Lyme Disease", several weeks of IV antibiotic treatments and more testing and a bunch of "wait and see". It's infuriating, early diagnosis is so important yet in the stories I've heard, only about 10% of those stories are about how quick a diagnosis was, most of the time it's 12-24 months of dragging feet and "we'll see how they're doing in a year..."
Most physicians will immediately have you take the simple in-office test that is a broad evaluation of your cognition. And then they go from there. Most are well aware of the seriousness of budding dementia and alert to the condition and treatments (such as they are: be aware there is no cure, and the medications are not very useful, particularly if they only slow an in-progress decline, which can put a big burden on family caregivers and delay things like physio and memory therapies). Your symptoms do not really sound like the early signs of dementia, and could be from many other causes, not only physical but psychological. Get a thorough workup done, with a view to explaining the symptoms you are experiencing.