How important is it to see a neurologist?

You are correct about medications. There is no known medication that for certain works for any dementia. However, there are huge differences in types of dementia and it is important to know. For instance Frontal lobe dementias are different than Lewy's and if you look up Dementias they will give you symptoms. Some involve hallucinations. Some are a result of multiple small strokes. The staging is very crucial. You are at some point going to need to get a POA that is DPOA activated, or may need to be representative payee. You are going to require proof of dementia from several MDs (or guardianship or conservatorship). Only you can decide what to do about this, but it is important. You can sit with your Mom and tell her that this needs to be done, and if it isn't done with cooperations, then it is only a matter of time before she is loaded into ambulance by EMT and taken to hospital where all of this will be done without her input, making it a good deal more difficult for her. Tell her of the changes you are seeing. The fact that she is reacting with such adamant outbursts is in itself diagnostic.
If you cannot get her cooperation then indeed you are up the creek until this comes to a head. And it will. You can do wellness checks. But soon enough it WILL come to EMS taking her in an ambulance for evaluation. It will be VERY difficult at this time to get anything but guardianship, certainly more difficult than getting POA. You may have a very small window of time in which to act now. That is the sad facts of the case. I sure wish you good luck. This is fairly early onset, and that's often one that progresses more quickly. OR it may be anxiety and depression. You can't know without a full evaluation.

IMO in order to get around her reluctance she doesn't need to hear about your suspicions or anything about your research into dementia, in fact pushing that agenda will only cause her to dig in her heels. How about something like this:
"Mom, you're way too young to have to give in to this, I want you to see someone to find out what is going on and who can help treat it so you can keep your independence".

Yes, she should see a neurologist if it is recommended. It’s true, meds are not always as helpful as we would like but a doctor visit is still in order to discuss further details and concerns.

Wishing you peace during this difficult challenge.

To be honest, few people really like seeing a doctor. Your mom might suspect a serious illness like AD and doesn't want to hear it. Fear feeds denial. She may not really see it as a problem and attribute her memory problems as normal aging. Maybe she doesn't like any kind of dr visit, or just doesn't recognize a problem (anosagnosia).

If her PCP referred her to an oncologist would she go or would she just blow it off. There are many types of cancer, some quite curable, some not. Basil cell cancer, if caught early, is very curable, pancreatic cancer, not so much. It's important to know which.

So to with memory issues. The PCP is not trained to administer cognitive testing, nor do they have the time during a patient visit. A neurologist is trained in identifying cognitive problems and their many causes. If your mom is diagnosed with dementia, it's important to know what the cause is. Dementia refers to symptoms and, in itself, is not a disease. If your mom exhibits short term memory loss but can function normally around the house, she may not even have dementia but mild cognitive impairment, which could lead to dementia.

The neurologist can determine the cause. Pseudodementias mimic dementia symptoms, but are not caused by neurological degeneration and may be completely treatable. Thyroid problems, med interaction and even severe stress can mimic dementia. These are rare but they are real. The same as with cancer, it's important to know what you're dealing with.

So yes, she needs to follow up on the PCPs referral. However, nothing's going to happen overnite, so I wouldn't constantly pressure your mom. You have plenty of time. Respect her feelings. As her symptoms progress, she may be more willing to see a neurologist. Keep a record of what you observe. At some later time you might show her what you've seen, but go forward with compassion.

"You are at some point going to need to get a POA that is DPOA activated, or may need to be representative payee."

1) POA/DPOA for both would be a good idea ingeneral, if it can be accomplished before she progresses too far down the road. The need can be explained as necessary in case of emergency, and if you have one yourself, even better! Show it to her.

2) NO POA is needed to be SS Rep Payee. Federal entities don't even honor them. I was able to sign up via my local SS office easily - called, made appt, answered the Qs and waited for approval. Didn't need anything I brought along OR my mother.

The only time I needed something from a doc was for her pension, which was my dad's and it too was federal. Without ANY testing, I was able to get the doc we had at the time (fairly recent addition, due to the impending move to MC) to write what little was required, although it took 2 attempts to get just the right words! Were it not for the pension, I could say I needed advanced testing and medical/doctor documentation for NOTHING.

"You are going to require proof of dementia from several MDs (or guardianship or conservatorship)."

While there are situations where this might be true, it isn't always. IF the POA document specifies this is needed, then yes. IF one has to go the route of guardianship, that will be part of the process anyway. Otherwise, there's no need to rush out and upset her to get this done. Make sure you really NEED the verification first.

My mother never saw anyone other than a PCP (and the only test I am aware of was attempted by the latest doc office about 2+ years into already living in MC!!) I never had to show proof of dementia to anyone, not the banks/CUs, not the CC company, nor even the MC facility. In her case, it was most likely vascular dementia. I base this on her weight and being on BP meds for a long long time, as well as the progression.

There are cases where the "type" would be important, as there might be medications to alleviate some symptoms (or some to be avoided as well.) But there are ways to rule out other forms of dementia, often by symptoms observed and progression. For the most part, there are no medications that really are going to help. As noted above, there are some medications that should be avoided for certain types of dementia and some medications that can alleviate symptoms, if all other methods aren't working.

Unless you really really need specific documentation for something, why put herself and yourselves through this? The doctor has identified her as having moderate memory loss AND she became aggressive during the testing. A neurologist test is going to be more intensive and last longer. Given her reaction/behavior for this initial testing, I wouldn't want to be there!

As for discussing it with her, I NEVER used the "D" word around my mother. First of all, she mistakenly thought it meant you were "off your rocker", aka crazy. It doesn't mean that of course, but there was no changing her mind, even before dementia kicked in! Each person has a different experience, but often there are comparisons in symptoms and behaviors. In my mother's case, her world view was regressing in time. There was clearly short term memory loss (forgetting she said/did something, repeating statements and questions multiple times in short order AND denying there was anything wrong with her.) She was beginning to forget more recent activities or people (she was confusing my daughter with one of her cousins, someone I'd heard about a lot but never met!) She would insist that she was find, independent and could cook (nope X 3.) She would also state that yes, she might forget things, but she was old and entitled to forget things once in a while - problem is it wasn't once in a while, but there was no point trying to convince her otherwise! It's easier to go with the flow and work around whatever they believe.

Thank you so much everyone for your advice and kind thoughts. She's also refusing a mammogram and bone density scan so I guess I shouldn't be surprised she doesn't want to see a neuro. I don't live close nor are we very close but I do care about her and don't want her to suffer. I think I got my dad to agree to meet a social worker while I am there which I am hoping will be a huge help, and I think my brother is coming around too to the idea that she is no longer capable of making the best decisions for herself. The three of them have a dynamic that I don't really understand (and that I opted out of myself, by moving far away) but it seems to be somewhat working for them -- and truthfully I am not willing to be fully hands on in terms of inviting them to live with me so ultimately I need to accept that I have limited influence.

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OkieGranny she needs a mammogram because her sister died of breast cancer in her 60s, and she hasn't had one in years.

Yes, she needs to see a neurologist. To determine what type of Dementia she has. Moms neurologist chose not too give her the meds that help with cognitively. Once the desease progresses, those meds don't help. He would only medicate if her hallucinations bothered her (never did) or her night terrors were more than 2x a week. In other words, meds aren't needed until needed.

My Mom did not like to be touched. I chose, in her late 80s, to stop mammograms. Also, her annual check up for bladder cancer that she had been over 5 yrs cancer free. If she had gotten cancer, we would not have done anything about it.

A PCP only does a basic test to check someone's cognition whereas a neurologist does more in depth testing. If it weren't for the neurologist that saw my father we would never have know that he had strokes in the balance center of his brain. It explained why he constantly fell. My father was dx with Alzheimer's and vascular dementia. The neuro will be able to make a reasonable determination of the the type of dementia/s your mom has. Different dementias have different aspects, affect different parts of the brain, even though each person has their own individual journey down that road. I'd say it's important for your mom to keep the appointment even though she may fight it.

Mammograms:
"This routine continues until they turn about 75 years of age or if, for whatever reason, they have limited life expectancy."

Several online sites suggest mammograms after age 75 offer little, if any, benefit. In addition, if she has "moderate dementia" it may not make sense to continue these screenings. Given your description of attempting the cognitive screening test, which is usually just questions, not a sometimes painful, awkward and personally invasive "test", I should think she will balk at the mammogram. Personally I hate them. With maybe ONE exception, they always make me come back for a second round. To date, nothing. The last recall was a diagnostic, so it cost me about $150, surprise surprise! That won't happen again! The bone scan isn't nearly as bad, but again, to what purpose?

With dementia, depending on the type, her life expectancy could be as low as 5-8 years, but some live longer. A lot depends on the type and when it is Dxed. If she's already in the moderate stage, that could reduce the number of years remaining. It's really hard to guess how many years one has left, as the posted numbers are estimates based on averages.

Also according to online sites, breast cancer, untreated, could take about 8 years to cause death, if untreated. The bone scan will only show if she has osteoporosis, which can lead to broken bones, but with dementia, falls are common and breaks will happen with or without osteoporosis. NOTE: my mother clearly had osteoporosis (had the classic Dowager's Hump) yet despite age (97) and several falls (more like tumbles), she never broke anything.

Basically her life *could* be in a race as to what might take her from you, dementia, BC or something else. Even if the mammo showed BC, could she tolerate surgery and radiation and chemo? Anesthesia alone can accelerate the memory decline. That along with the radiation and chemo could leave her miserable and unable to cope with the treatments. She most likely would refuse any of the treatments, based on how she's been already!

Rather than fighting her to get all these "exams" done, spend the time learning more about dementia, what to expect and how to cope with all that comes with dementia. That's what worked best for me (I knew nothing about it before her symptoms raised flags.) There's a lot of information out there, just be sure to stick with trusted sites. They all present similar information, including attempts at "staging", which is based on averages, but there's always a chance one site or another may provide more information or a different take on symptoms.

My mother was quite a bit older, but other than conditions that might leave her in discomfort or pain, such as a UTI or broken bone, I had already decided not to pursue any serious medical intervention (as was in her plans before D), with one exception: I did continue the Mac Deg treatments, 4x a year. She had limited hearing so it was important to try to preserve what eyesight she still had. I only cancelled the Oct 2020 one and all going forward because she was already in a wheelchair, difficult to take places AND had a stroke about a month before that appt, which further affected her ability to help with moving her. She would not have done well with the trip and the extensive testing required before treatment.

Besides POA for Mother - sorry to add to your list - does anyone have POA for your Father? If it's your Mother this may need attention. As your Father is more willing to discuss these things, he may wish to start this process & to nominate someone else for himself.

I just thought... seeing a Neurologist is helpful for staging function level & possibly a dx but also for capability. It could be put to Mother it is a usual part of doing POA paperwork?

You've made the appointment; hang on to it; when it approaches ask your mother if she will come with you to it; if she says no, call and cancel. Try again another time. Don't frighten or alienate her. The investigations and assessment are important, but getting them all done right now this minute? - not so much.

I'm narrowing my eyes at this "she got aggressive during the cognitive test" part. WHAT was said, or what attitude was demonstrated towards her, that so rubbed her up the wrong way and wasn't corrected promptly? Anyone carrying out the testing should be sensitive to a patient's signals, and if a patient is becoming stressed or upset you don't just plough ahead to the point where she is driven to aggression. Did anyone accompany her?

I should let the dust settle, then look for opportunities to discuss with your mother (both of your parents) how she would like to manage the aspects of life that she is, demonstrably, struggling with. Be specific: e.g. there are three complete daytime outfits laid out in the bed, but I can see that this morning you could only find your stained clothes from yesterday to put on. How would it be if we* put the next day's clothes ready at bedtime and stand the laundry basket in the corner for you to drop today's worn outfit in.

we* includes her but could be her + anyone - you, your Dad, a caregiver. It's important she stays in control of choosing what to wear.

What is your father's view of all this, by the way?

P.S. The example of the three outfits laid out and the dirty clothes being worn is from real life. The client thought she was fine. She could put her clothes ready. She DID put them ready. Time and again. It was just going all wrong at the point where she actually got dressed..!

Nothing may have been mishandled during the cognitive testing to have the patient become aggressive. I recently underwent extensive testing as part of being in a clinical drug trial. The cognitive part of the tests had about 10 or 12 different parts. Some I sailed through and some made me a bit sad and frustrated because I knew I wasn't as sharp in those areas as I wanted to be. That could easily make someone mad and angry, and not handle their own response appropriately.

My Mom, who was diagnosed with Alzheimer’s a few years ago, also did not want to go to the Dr, and thought she didn’t need it.
I told her “we” need to get a complete checkup regularly now that she’s reached a certain age, because it’s the right thing to do for her own health.
In order for me to be of help I needed a sort of baseline reading on her overall health.
I first took her to a regular neurologist, they did an MRI and diagnosed Alzheimer’s.
Then I found out there is such a thing as a geriatric neurologist, who was able to further help with diagnosis and treatment.
mom refused to take the Alzheimer’s meds, so I didn’t push with that. If it is Alzheimer’s, then it just delays the inevitable anyway, and made her have nightmares.
hopefully your parents will want to help you by cooperating and go to the Dr, as well as making their long term care plans.

I had a very challenging time with my dad, he felt he was fine, however, he was far from fine. I did everything in my power to address the issue. However, even with the POA in place, regrettably, depending on how this is written left me without the permissions to do anything. People have the impression the POA is able to do things but, until you get the incompetent medical decision, the person has every right to seek or refuse medical attention, live their life in the way they wish. My dad progressed to the point that his dementia was very bad, but he was in his stubbornness felt he was fine, and I was helpless. While I tried every angle I failed. I seeked legal council, but the fact was he was allowed to make his own decision as he was an adult. Continue to give it a go to see if mom will go to the neurologist, but don't push too hard, as think of it that she may realize she has a problem, but feels that she is going to loose everything she has worked hard for during her lifetime. I was told many people know they have problems, but fear of loss of control by someone else making their decisions for them is equivalent to being in jail.
Best wishes and keep trying but, in baby steps.

Dementia can be caused by different conditions: strokes or vascular problems, Alzheimer's disease, and Parkinson's disease. Each has different treatments and different medication that are helpful. Medications are helpful in early stages of dementia for Alzheimer's disease and Parkinson's disease. Medication treatment for stroke-related or vascular dementia could dramatically slow its progression. Each type of dementia has different stages and life spans.

I agree with your PCM that your mom needs to be evaluated for diagnosis and treatment. She may be experiencing frustration and anxiety from dementia that exhibits as agitation and "acting out". There are also anti-anxiety medication that can help her to relax and be easier to care for.

It is possible that a medical condition underlies your Mom's condition and can be improved. That is one possibility. If you can, try and encourage your Mom to explain what concerns her about seeing a neurologist. It may be something about which you can definitely reassure her. It may be quite reasonable as well. Useless confirmation of pretty clear conditions does happen. Then, really think about if you really consider it useful to do so. If so, why, and how to explain it to your mother. If it doesn't work out, consider repeating the whole thing is a month or two. Then, if it still doesn't work out, there will be lots of other problems to work on, and you did your best.

The most important thing right now is to get the paperwork in order while they are still capable of signing their names. They need advance directives for medical care, POA for medical and financial matters, also contact their financial institutions (bank, credit card, etc.) they may have their own forms for POA, be sure the POA is on file with Medicare and Social Security to be able to speak on their behalf, also a will if they have assets. If there are assets, an attorney who specializes in elder law is helpful. If they want to stay in their home, you are doing the right thing by trying to line up caregivers to help out. You can also make things easier for them if they have someone to do the cleaning, a handiman they can call on as needed, someone on call to shovel snow (if they are in a northern climate, etc.) It is true that the medications for dementia are not guaranteed to help. They say that some of them slow the progression of the dementia. We tried a medication for my mother, but it was difficult to know if it did anything. She now has advanced dementia and is in hospice care and the medication was discontinued. She seems to be the same without it. With dementia, your mother's condition is likely to decline over time, and she'll need more care as time goes on. You and your father can begin preparing for this now, or at least keep it in mind.

We did take my mother to a neurologist and they did prescribe Aricept and later Seroquel which helped for a little while… Frankly, the neurologist was of no help. Later at one point when she was in and out of the hospital he told us to quit the Aricept… I think she went downhill after that.

There is no cure for dementias; when it comes to Alzheimer's it is a steady decline. They diagnose something which cannot be treated. Medications mask symptoms but also increase risk for falls and appetite loss.

Namenda side effects may include: "diarrhea; dizziness; or. headache,
severe headache, blurred vision, pounding in your neck or ears; seizure (convulsions); or unusual changes in mood or behavior."
https://www.drugs.com/namenda.html

Side effects of Aricept: "Diarrhea, loss of appetite, muscle cramps
nausea, trouble in sleeping, unusual tiredness or weakness, vomiting"
https://www.drugs.com/sfx/aricept-side-effects.html

Doctors will often prescribe both. Double whammy...

Alzheimer's wins in the end...

My husband was diagnosed with memory loss/dementia a 1-1/2 years ago after the neurologist did an mri of the brain. He was put on Aricept and Excelon 1 having had bad reaction to both. Finally put on mementine and anti depressant. Dementia and Alzheimer’s are progressive diseases with no cures. I find that both meds have done little to help. He has good days and bad ones and that good day can change thru out that day to a bad one. I suggest you embrace the good ones and be ever so empathetic to what they are going thru. When my husband has good ones he has told me how scary it is to be in your own house and be disoriented and in a fog with nothing making sense. His only peace of mind is that I am always there for him and feels safe. There is no cure or miracle drug that makes any of this go away. So enjoy those times and make them special for both of you. I put myself in his place how he feels and how I would want to be treated. Their behavior is not their fault. Be patient. Lastly pray you never get these terrible diseases.

Do you know if dementia or cognitive decline is listed in her medical file? I understand that without POA you probably don’t have access.

I went with my mom to see a neurologist, which was pretty much useless except for getting that diagnosis on her chart. Then, the doctor didn’t put it in so I had to push for that. However, having dementia in her chart definitely was worth that appointment.

Everyone’s medicines and treatments for dementia varies, but I found having dementia in mom’s chart helps a lot because otherwise the medical staff didn’t see it, or want to see it, and her dementia being unofficial caused some sticky situations. I have to add that I’m POA and mom doesn’t check her online medical history, which helps!!

Truly wishing you the best with this!

“You can only do what you can do,” that may mean, you can try to set up an appointment and talk her into it, but if she refuses, let it be. Try again later if possible. Like everything in life, we want to take the bull by the horns but then we realize the bull is crazy strong and our hands are too small. Try to keep your relationship good and supportive. Don’t knock yourself out.
Do what you can, what she allows, and if somethings virtually impossible, then let it go.
we have to be humble with the limitations. Bashing our heads against walls it’s not helpful.

It was helpful for diagnostic purposes. Just in case it’s a treatable condition.

My mother went to a neurologist and had a pet scan. They clearly saw changes in her brain and she got a clear diagnosis of primary progressive aphasia (PPA). The only thing helpful about it was having an actually diagnosis to answer some questions and to help us prepare for the future. Other than some Speach therapy there’s no amazing treatment.

I think a neurologist is huge for dementia quality of life. I brought my mother to the best one I could find. He put her on mementin which didn’t work but then aricept which did. Her speech got better as well as her confusion. Didn’t so much improve her memory but she was less confused which made her less upset and anxious. He is a great doctor takes her hand and calls her lovey. She likes him and that is rare.

At her young age, in my opinion, it would be best for her to get testing.

First, I would suggest going to an elder care lawyer and get all the POA documents drawn up. That was the best thing I could have ever done because boy, did I need them!
My Mom has dementia. In the beginning, she said she was taking her meds, but that was a lie. She had her robe pocket filled with her meds. She fought me tooth and nail to go to a neurologist, who I thought was a waste because he really couldn't do anything for her other than prescribe meds that don't really do anything. She played a great role in his office except she couldn't really answer the questions (who is president, remember the three words I gave you 3 minutes ago), but she said she was fine so he believed her. He suggested a neuro/psych evaluation so I tried to find a doctor(s) in my area who would be able to do that and the few I did find seemingly didn't want to be bothered because the "test is long and it would be a lot for a person of her age" (she's 83). When other doctors were suggested, she dug in her heels and flatly refused to go. Honestly, there were so many other things that she was fighting me on, I truly didn't have the mental strength to fight.
She fought the outside help as well. My father needs extra help that she is not able to provide, but the help that did come in, she didn't like so she dismissed them.
Honestly, my advice is do what you can and by that I mean, what you are willing to dole out emotionally and physically. Giving too much of yourself can be disastrous for you, trust me, I know first hand. Things have a way of working out. In my case, a couple of medical issues for both of them and now they are willingly heading into assisted living because they see how dangerous it is to not be accepting the reality of their situation. I am so very relieved that it didn't take someone falling and dying to get them to see the light.
Do your best so that when they are gone, you can say and feel confident that you did all you can do. And that is enough.

I have to wonder if she got "aggressive" or if she got agitated and/or defensive. This is where, if it can be pulled off, there is an advantage to a neurologist with experience. You might want to check in with the local alzheimer's assn for their suggestions or attend a support group meeting and see what folks there have to say about who is good. In our case the neurologist was far more caring and wonderful than the primary care MD, and they knew how to handle my mother's reactions when they attempted to screen for issues. My father was with us and he only appreciated all the time the neurologist spent with us when I could see his questions were clearly showing him the full picture to help in his diagnosis. In our city we have two major competing health systems and the neurologist was not from the one the primary care is affiliated with, which imo has turned out to be a good thing. The primary care MD has been useless and nonsupportive to me in spite of his offers to do "whatever he can/is needed". I think the man has memory issues of his own, i.e. offering to have an outpatient social worker call when I have told him I AM a social worker and I KNOW the local resources, or assuming as a daughter I am ever available and capable to help my father with some at home exercises to help with his balance/dizzy issues (even though I am trying to work and also recuperating from a dissected aorta!) If you succeed in the neurology appt, make it worth your effort to go to the best you can find and try to be present as they can give some questions to family re symptoms as well which can be helpful. Good luck:-)

Want the short answer or long answer?

NO! Not worth it. We had to DRAG my Dad to a Neurologist. My Dad hated it. He was never given a diagnosis. Waste of time.

It’s probably early onset....go with it. Meet them where they are at, don’t correct them.

Work on bringing someone into the home, to keep them safe.

Pick your battles.

Best of luck❤️