Are you guessing she has dementia or has she actually been screened for it by her PCP? There is no stress in being evaluated for dementia. It's family history and some cognitive paper tests. Dementia is not a disease. It refers to symptoms that are caused by an underlying condition. Dementia is caused by over 70 different reasons, some treatable and even reversible and some not (e.g., AD, DLB, VaD, and others). Would you want to know the cause of her dementia? Would you want to know the cause of a headache, whether it's stress, a brain bleed or a tumor? If you don't know the cause, you don't know what you're dealing with. Once you know the cause you can educate yourself about it and become a better caregiver. What if it's a medication interaction, vitamin deficiency, thyroid problem, would you just let it take its course? You say "there is no magic pill" but there is if it's treatable. Her PCP will try to eliminate all the treatable conditions first, and if there are none, he/she should tell you and refer you to a neuro dr. So follow up and find the cause of her dementia.
Not all dementia is untreatable. I saw my dad get better with proper care and treatment for his medical conditions.
I don't think that it is wise to assume that anyone has dementia because they have symptoms, get her a full physical and determine if this is caused by something very treatable, then she can make the decision about how she wants to proceed with her health care.
Just posted the link to ur other question so members are aware of it.
If Mom has not been formally diagnosed she should be. Like said, there are other health problems that mimic Dementia. There is no cure for Dementia. In the early stages medication may help with the cognitive ability but as the Dementia progresses the meds no longer are effective.
Mom needs a good physical and labs done to rule out anything physical causing the problem. A neurologist can tell you what type of Dementia she has. The type depends on what medications may help.
I don't know what you know about the tests, or what you know about the management of the various kinds of dementia, or about planning care. But wouldn't it at least be worth finding out whether your first supposition is correct?
My mom at 85 yr old took the non invasive tests and was so happy to know she had not imagined what she had known. She had kept saying “something is wrong with my brain”. She could no longer do math {was an Accountant}, Forgot how to write a check, could not read and comprehend, kept losing stuff and began hoarding..She was diagnosed with Lewy Body dementia. She cried for a few days and then starting preparing for the changes. We had frank talks on how she wanted me to find a good memory care unit when the time was right. She said “you will know when I need to go...do it with no guilt..and do not listen to me when I object!”...and I did as she said..Covid pushed her over the edge with the isolation. I found a lovely memory care facility and she now says she likes it there, feels safe and content. I feel sad for what has changed..
Gosh, your mom sounds like a gem. My husband is in denial and we cannot even talk about it. I'm impressed that she gave herself some time to mourn the loss of the future she had anticipated and then stepped up and began planning for the new future to come. What a priceless gift she gave you by being willing to have those frank talks with you. And you have every reason to be sad about all the changes. It is not easy, is it?
They aren't that stressful. The CAT scan is kind of annoying, but only stressful if you're claustrophobic or in severe dementia. The other one is low-key, in the doctor's office, answering questions. For a lot of what's coming, you'll need a diagnosis, a POA, and a durable MPOA. Get the diagnosis in case you need it later.
Put her through the tests. The doctors have wished for a baseline of my Mum. It’s caused an issue at least once that I know of and it helps them know how quickly things are progressing. Get all the paperwork in order now, if it’s not been done before. Also there are now drugs that can slow the progression so if she’s just starting, get a diagnosis and get her on those.
If it's onset, then she would be able to talk about having the tests done, yes? What does she say? What would you do with the information once you found out? How would her life change? If having that diagnosis is important to her, then go ahead, but if this is about you and your need to know so you can pigeonhole her into a "way of being", then I say let it be.
First I would become familiar with signs of dementia. Then get family Dr. to give simple memory test. May need to repeat test after a while to see if further progression. Now is the time to gather and complete any legal docs that she may have to sign. POA, Will, Trusts, Protect assets for future medicare application etc. If sudden confusion happens, check for UTI. Home test kits are at pharmacy. If dementia is definite then prepare for a possible long tedious mentally and physically demanding journey if kept at home once no longer mobile. Best of luck to you.
Testing will give her doctors important information that can help in dealing with her care. Also, other issues which are treatable can mimic dementia and tests will reveal those. Her neurologist will be helpful in guiding your family thru this.
A full checkup is probably the best place to start. There are several conditions that could mimic dementia, so we don't want to assume anything. Many of these conditions are treatable.
UTIs are common (I was skeptic until mom had her first one after moving to MC - oh boy!) Electrolytes - before dementia my mother was not feeling well, seemed out of it, confused, etc. Turns out her potassium was low from drinking TOO much water! Once stabilized, she returned to her usual sometimes not to nice self! Hearing loss - I mention this because of your other post. Perhaps she doesn't converse much because she can't hear you. Hearing loss can contribute to dementia, but it would be wise to ensure her hearing is okay and there's no wax buildup. Simple dementia testing can be part of her checkup. My mother was already in MC for almost 2 years when we changed docs. They attempted the test - no go. My checkup was a few months later, and they administered the test to me as well. Always good to have this done even when no symptoms, as then they have a baseline.
Symptoms can vary from one type of dementia to another, but also from one person to another, even if the underlying cause is the same. You don't want to assume anything, even dementia. My clue was my mother repeating herself, often. There were some other subtle signs, but I knew nothing about dementia at that time. I started with research on these observations and all combined (plus some other subtle signs that were hindsight - specifically accusing others of taking items - it wasn't much and not often, but clearly after the fact these could have been minor signs of impending dementia.)
What we/I did was to find an agency to bring aides in - none of us live close enough to check on her every day or even every few days. Her hearing loss and forgetting to replace the hearing aid batteries would make phone calls useless! One neighbor was a godsend - I didn't overuse her help and later gave her a gift card for a local restaurant, but there were times I would call her to check on mom. I even had to contact the local PD - officer was smart enough to use the name on the phone (place for pic/program phone number) to call me and then request a call back. Mom had managed to turn the volume off on the phone!
Anyway, before scheduling us, they sent a nurse to evaluate mom. She administered a test, seemed to be more than that simple mini test the docs do in office. She did it in mom's place, with 2 of us present. Medicare WILL pay for this test. Nurse told me that Medicare also would have covered some in-home care IF mom had agreed to personal care, such as help with bathing. Mom was NOT agreeable to that! She was okay with most ADLs, but finances, cooking, losing items, etc she was not good with.
So, if possible get her in for a checkup. Ensure they test for UTI and administer the mini-test for dementia. IF she has a UTI, treat that and have them redo the mini-test after - she may pass it then. Have her hearing/ears checked. Have doctor rule out any other potential causes for mom's withdrawal. Hopefully you have a decent relationship with mom's doc. You don't want them to just willy-nilly prescribe medications unless they REALLY know what the cause is. If you're not comfortable with the Dx, request more testing or referral to a specialist.
IF she really has dementia, keeping her occupied, pull her out of her shell and keep her busy can help. It won't cure it, but being isolated can certainly hasten the decline.
From your profile you are not comfortable with care-giving. You need to get to the truth about her condition and then plan accordingly. Nothing says YOU have to provide the care, but you CAN oversee her care, find a place for her to be safe and cared for, etc.
you cannot go wrong either way.I found the tests to be fun and easy. Others who really did have some dementia were not at all disturbed by taking them. If the administrator of the tests is at all competent, the tests would not be at all stressful. Please consider having your mother take sublingual methyl B12 every morning and take it yourself. The so called antisepressant meds and also the so called alzheimers meds do no good at all. They may even be harmful.B12 sometimes works miracles.; and it is always totally harmless.Also, include a lot of magnesium rich foods in your and your mother's diet every day. A handful of delicious nuts every day plus frequent spinach can do wonders for the brain and nervous system.Also, avoid statins, diuretics, narcotics, or any other nutrition draining substances.Most brain and nervous system disorders are caused by malnutrition. Malnutrition especially in the elderly is often caused by nutrition draining so called meds.Finally, eat an iodine rich food at least 2 times a week. I eat 2 whole eggs every day and either wild caught cod or shrimp at least once a week.a well functioning thyroid is essential to a well working brain.The thyroid needs iodine.All of this good nutrition has lovely side effects. Your hair will never turn whit e nor even completely gray. You will have very few wrinklesI am just now beginning to turn gray at 86.Some people with thyroid problems have white hair in their 30's. Love to all
Do what you want, BUT make certain to get all paperwork in shape before testing. Wills, POA, etc. Agreement to pay caregiver if needed. Once she is diagnosed, she cannot sign contracts.
Depends on the level of dementia. We already had most documents in place, but had to make some changes. The EC atty took mom aside and queried her. She was still able to understand and he was okay with her signing the new paperwork. It did help that we already had a relationship with this atty, but he still did what he needed to so as to ensure no problems later!
It certainly doesn't hurt to get everything in place first, however a good EC atty might also determine that she isn't capable of understanding and signing even if done before any testing.
My dad has Alzheimer’s or dementia. Years back he asked his reg. Doc whether he should go thru extensive testing. Surprisingly, his doc said some drugs can preserve cognition for a time, but behaviors tend to tank and get worse. When you stifle the behaviors cognition tends to decline more. He said he’d administer them, but to talk it over with our family. My dad hasn’t had ugly behaviors and we decided to let nature take its course. He receives 24/7 help in his own apartment and continues to decline cognitively, but he’s also 90 now. Not sure if we did this right; perhaps we should have gotten results then acted, but we made a choice and are living with it. I believe for our family we did it right.
It is important to note tha t low potassium levels are indeed dangerous to the brain and body. Also, low levels of magnesium and B12 usually accompany low potassium levels.Low levels of these and other essential nutrients are caused by diuretics and also by not eating a lot of fruits and veggies daily.Blood thinners also cause these problems. Anyone who must take a blood thinner should eat a lot of potassium rich foods every day, take methyl B12 every day, and hopefully their doctor will prescribe extra portassium. Love to all
I agree with BobbieSena. you need a true diagnosis. It could be something else besides dementia. First a physical by a neurologist. If they want to do neurotrax (paper tests) s/he could limit them and return for a second half if need be.
First off, testing is no big deal at ALL. Most of the MOCA & SLUMS tests are oral; simple questions, not designed to be stressful or upsetting at all. One question requires a pen; you're asked to draw the face of a clock showing 3:00 or some other time; that is to test the Executive Brain function. My mother drew a blob of something that had no resemblance whatsoever to a clock, never mind showing a time. Right then I knew she was cognitively impaired, and my hunch was valid. The patient is assigned a number as a score for the test which is a baseline; from there, the patient is tested yearly (or whatever) to see if there is a score change meaning a decline in cognition.
It makes NO sense to refuse simple testing to make a diagnosis, or to dismiss a diagnosis. Process of elimination is often times a valid approach to medicine. Getting a baseline established if this IS dementia is important as well.
Secondly, you don't know WHAT you're really dealing with here. Your mother could be suffering from a urinary tract infection or a host of other things that mimic dementia but aren't. Get her to the doctor for a full work up and let the doctor decide what to do next. Don't go into this with fear, but with hope that the doctor will be able to help BOTH of you figure out what's happening here.
Lea, I used to laugh when Doc would do some of the simple tests in hospital room. They would say, "Can you tell me the current president and the two preceding him" and I would say "Boy, NEVER ask me that. I can't do it. I can come up with it if I sit here a while, and can even tell you Barack's girl's names, and George Bush's girls names, but I can't come up with it fast as you want, and I will sit a second hemming and hawing. So I fear some of these tests. I still say, it's a good idea to get tested. And I CAN draw that clock quickly enough, set at about anything.
I agree she should be diagnosed. But before you do, be sure you have Power of Attorney, DNR, will, and any other papers signed because once she is determined to be non-competent, she will not be able to do those things. Just my two cents worth.
The tests are not that stressful. There are medications that will provide some short term help. Might buy a little additional quality of life for all concerned. Agree that you need all the POAs immediately.
(this last one gave me a headache! there are 3 pages, with links to each page, a Next Page link and a View All - it took multiple tries to see all the items listed. could be my PC, but if persistent, you might get to see them all!)
There is duplication among these - the point is you can't assume dementia as it could be something else. Noting any changes you observe and when these started would be helpful to the doctor before the exam.
Hoping you can get her in for a full checkup, AND follow up if necessary, to get to the bottom of her current state. What you described in your profile doesn't sound like typical dementia, but that is for a doctor to eke out of testing and exams. IF the bottom line is dementia, going through extensive testing probably isn't necessary, but that's down the road. Do get her in for a full check and perhaps they can figure out what's wrong and maybe fix it!
You should have her seen for a complete physical. You should also have blood and urine tests done. You need to rule out UTI and any other diseases that might cause changes in cognitive abilities.
I don’t agree with some of the responses about the testing. Yes, the neurologist asks a hand full of questions at an office visit but a cognitive test is a 2 day affair. 3 years ago, at the very beginning of my husband’s difficulty’s, it totally wore him out. He really did not want to go back the second day. His diagnosis at the time was Mild Cognitive Impairment. He was smarter than 80% of men his age with a memory worse than 80% of men his age. This is 3 years later and he is on the slippery slope . We have the option to have the test done again but my question is Why ? He had such a difficult time the first time and I am not sure it is worth it.
But are you not glad, and was he not happy on some reason to know what is happening and WHY? I know my brother sure was happy to know that a diagnosis (by symptoms) of Probably Early Lewy's Dementia was the reason he was experiencing the world differently. He was happy to know he had to make his move to where he would live, settle his affairs, make certain paperwork was in place. He told me "I am not thrilled to know what is ahead for me (he beat it by dying) but I am happy to know why I see the world differently, and why I experience it the way I do now". Further testing? I agree. No reason. Once you know, you know.
My first question is "What symptoms are you seeing"? My second question is have you spoken to your Mom about the symptoms you are seeing? And what was her reaction when you spoke to her? My third question is "Would your Mom be willing to do some testing? Just to be brief, some of the first things noted are loss of SHORT term memory and perhaps putting things in inappropriate places. Such as the butter in the dish cabinet and hairbrush in tool drawer. Something like that. The reaction in someone TRULY going into dementia is often volatile. That is you mention concerns gently and the reaction is adamant and defense. It is more likely it is NOT dementia if the person says "Wow, I am so unaware of what you are hearing; could you make me a list? If you are right, and a diary kind of shows that, I should be tested". Now, if your Mom would agree to testing there is utterly NO REASON not to suggest it. Staging is important for all concerned when possible. A gentle discussion and a suggestions after you have kept a diary of things that "went south" might help your Mom accept the testing idea. And who knows, both of you could be relieved by the outcome. So there is no reason to FORCE this, but if you suspect it there is good reason to get POA done, make certain needed for future Advanced Directives, wills, wishes all known and documented before this gets worse. While Mom is still able to make her wishes for any future problems known to her attorney, she can still do this paperwork. My brother, prior to his death, was diagnosed with Probable Early Lewy's Dementia simply by his symptoms. This happened after a car accident. At that time he gave up his home, moved to ALF, made me his POA and Trustee of his Trust, gave up his license, all by his wishes. He was able to discuss his wishes, his concerns, and said it was "interesting" the way his brain was working differently. He was fascinated on some level, and fascinating to listen to. Up front and happy he knew what was happening in his brain to cause his symptoms. I say TALK to the person gently and honestly as you are able. But again, what are you seeing that has you concerned? Can you tell us?
I don't think that it is wise to assume that anyone has dementia because they have symptoms, get her a full physical and determine if this is caused by something very treatable, then she can make the decision about how she wants to proceed with her health care.
Just posted the link to ur other question so members are aware of it.
If Mom has not been formally diagnosed she should be. Like said, there are other health problems that mimic Dementia. There is no cure for Dementia. In the early stages medication may help with the cognitive ability but as the Dementia progresses the meds no longer are effective.
Mom needs a good physical and labs done to rule out anything physical causing the problem. A neurologist can tell you what type of Dementia she has. The type depends on what medications may help.
Juse let Nzture take it's course. Ike you said there is no magic pill to take and no need to give stress and anxiety to your lived one.
You might install Cameras in the home to keep watch.
If you're worried about loved one falling let them wear a First Alert.
And you're qualified to diagnose this, are you?
I don't know what you know about the tests, or what you know about the management of the various kinds of dementia, or about planning care. But wouldn't it at least be worth finding out whether your first supposition is correct?
I feel sad for what has changed..
Get all the paperwork in order now, if it’s not been done before.
Also there are now drugs that can slow the progression so if she’s just starting, get a diagnosis and get her on those.
here is a link i found on my facebook page from beingpatient.com that sounds interesting ...
https://www.beingpatient.com/diagnosing-dementia-with-a-sleep-test/?fbclid=IwAR3bcMIqvIoF8yO4wRkPZU-Noe3pG9LRh17KvmnYYmr0vwOlzeijFJAd6HI
best wishes
also having the condition labeled helps everyone caring for her.
UTIs are common (I was skeptic until mom had her first one after moving to MC - oh boy!)
Electrolytes - before dementia my mother was not feeling well, seemed out of it, confused, etc. Turns out her potassium was low from drinking TOO much water! Once stabilized, she returned to her usual sometimes not to nice self!
Hearing loss - I mention this because of your other post. Perhaps she doesn't converse much because she can't hear you. Hearing loss can contribute to dementia, but it would be wise to ensure her hearing is okay and there's no wax buildup.
Simple dementia testing can be part of her checkup. My mother was already in MC for almost 2 years when we changed docs. They attempted the test - no go. My checkup was a few months later, and they administered the test to me as well. Always good to have this done even when no symptoms, as then they have a baseline.
Symptoms can vary from one type of dementia to another, but also from one person to another, even if the underlying cause is the same. You don't want to assume anything, even dementia. My clue was my mother repeating herself, often. There were some other subtle signs, but I knew nothing about dementia at that time. I started with research on these observations and all combined (plus some other subtle signs that were hindsight - specifically accusing others of taking items - it wasn't much and not often, but clearly after the fact these could have been minor signs of impending dementia.)
What we/I did was to find an agency to bring aides in - none of us live close enough to check on her every day or even every few days. Her hearing loss and forgetting to replace the hearing aid batteries would make phone calls useless! One neighbor was a godsend - I didn't overuse her help and later gave her a gift card for a local restaurant, but there were times I would call her to check on mom. I even had to contact the local PD - officer was smart enough to use the name on the phone (place for pic/program phone number) to call me and then request a call back. Mom had managed to turn the volume off on the phone!
Anyway, before scheduling us, they sent a nurse to evaluate mom. She administered a test, seemed to be more than that simple mini test the docs do in office. She did it in mom's place, with 2 of us present. Medicare WILL pay for this test. Nurse told me that Medicare also would have covered some in-home care IF mom had agreed to personal care, such as help with bathing. Mom was NOT agreeable to that! She was okay with most ADLs, but finances, cooking, losing items, etc she was not good with.
So, if possible get her in for a checkup. Ensure they test for UTI and administer the mini-test for dementia. IF she has a UTI, treat that and have them redo the mini-test after - she may pass it then. Have her hearing/ears checked. Have doctor rule out any other potential causes for mom's withdrawal. Hopefully you have a decent relationship with mom's doc. You don't want them to just willy-nilly prescribe medications unless they REALLY know what the cause is. If you're not comfortable with the Dx, request more testing or referral to a specialist.
IF she really has dementia, keeping her occupied, pull her out of her shell and keep her busy can help. It won't cure it, but being isolated can certainly hasten the decline.
From your profile you are not comfortable with care-giving. You need to get to the truth about her condition and then plan accordingly. Nothing says YOU have to provide the care, but you CAN oversee her care, find a place for her to be safe and cared for, etc.
It certainly doesn't hurt to get everything in place first, however a good EC atty might also determine that she isn't capable of understanding and signing even if done before any testing.
It makes NO sense to refuse simple testing to make a diagnosis, or to dismiss a diagnosis. Process of elimination is often times a valid approach to medicine. Getting a baseline established if this IS dementia is important as well.
Secondly, you don't know WHAT you're really dealing with here. Your mother could be suffering from a urinary tract infection or a host of other things that mimic dementia but aren't. Get her to the doctor for a full work up and let the doctor decide what to do next. Don't go into this with fear, but with hope that the doctor will be able to help BOTH of you figure out what's happening here.
Best of luck!
Agree that you need all the POAs immediately.
There are probably a lot of sites that can provide examples of other conditions that can mimic dementia-like symptoms, but here are some:
https://www.brightfocus.org/alzheimers/article/medical-conditions-can-mimic-dementia
https://www.aarp.org/health/brain-health/info-2014/treatable-conditions-that-mimic-dementia.html
https://www.sunriseseniorliving.com/blog/august-2017/9-treatable-conditions-that-mimic-alzheimers-disease.aspx
https://www.webmd.com/alzheimers/guide/diseases-like-alzheimers#1
(this last one gave me a headache! there are 3 pages, with links to each page, a Next Page link and a View All - it took multiple tries to see all the items listed. could be my PC, but if persistent, you might get to see them all!)
There is duplication among these - the point is you can't assume dementia as it could be something else. Noting any changes you observe and when these started would be helpful to the doctor before the exam.
Hoping you can get her in for a full checkup, AND follow up if necessary, to get to the bottom of her current state. What you described in your profile doesn't sound like typical dementia, but that is for a doctor to eke out of testing and exams. IF the bottom line is dementia, going through extensive testing probably isn't necessary, but that's down the road. Do get her in for a full check and perhaps they can figure out what's wrong and maybe fix it!
Further testing? I agree. No reason. Once you know, you know.
My second question is have you spoken to your Mom about the symptoms you are seeing? And what was her reaction when you spoke to her?
My third question is "Would your Mom be willing to do some testing?
Just to be brief, some of the first things noted are loss of SHORT term memory and perhaps putting things in inappropriate places. Such as the butter in the dish cabinet and hairbrush in tool drawer. Something like that. The reaction in someone TRULY going into dementia is often volatile. That is you mention concerns gently and the reaction is adamant and defense. It is more likely it is NOT dementia if the person says "Wow, I am so unaware of what you are hearing; could you make me a list? If you are right, and a diary kind of shows that, I should be tested".
Now, if your Mom would agree to testing there is utterly NO REASON not to suggest it. Staging is important for all concerned when possible. A gentle discussion and a suggestions after you have kept a diary of things that "went south" might help your Mom accept the testing idea. And who knows, both of you could be relieved by the outcome.
So there is no reason to FORCE this, but if you suspect it there is good reason to get POA done, make certain needed for future Advanced Directives, wills, wishes all known and documented before this gets worse. While Mom is still able to make her wishes for any future problems known to her attorney, she can still do this paperwork.
My brother, prior to his death, was diagnosed with Probable Early Lewy's Dementia simply by his symptoms. This happened after a car accident. At that time he gave up his home, moved to ALF, made me his POA and Trustee of his Trust, gave up his license, all by his wishes. He was able to discuss his wishes, his concerns, and said it was "interesting" the way his brain was working differently. He was fascinated on some level, and fascinating to listen to. Up front and happy he knew what was happening in his brain to cause his symptoms. I say TALK to the person gently and honestly as you are able.
But again, what are you seeing that has you concerned? Can you tell us?