Diagnosed dementia. Any advice?
I have observed changes in my wife over the years...to the point that I have researched the symptoms...Vitamin B12 seemed to help. Last year she had a traumatic event and while in the hospital her Doctor asked if she had dementia. I responded that it had not been diagnosed at that time. She has some typical mild symptoms...repeats, problems with planning, confusion, check writing, etc., but she is still functional. Some days are better than others. Others have noticed. Her primary physician finally asked her if she was having problems, so he set her up with a neurologist, and he scheduled a MRI. We met with the neurologist and this is when the problems began. They did a simple cognitive test, a few questions, she probably did 50%.....what day is it, write a sentence, draw a picture....When the Doctor came in, he pushed for me to say what I thought the diagnosis might be, explaining that he did not want to shock me. I could not believe that he expected me to state my thoughts. He insisted. I finally said I thought it might be Dementia and my wife looked at me in shock. He proceded to agree without any additional testing and prescribed medication. My wife was in disbelief and I couldn’t believe that he did not perform additional testing. It seemed insensitive. The medication caused severe nausua and vomiting, I called the office and they prescribed a lower dose but I have not administered it. She had another brain wave test in the mean time and they want a blood test. I am not sure how to proceed and it seems to me that the Doctor has not handed this correctly...Of course my wife does not believe him. I don’t know what to do.
15 Answers
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Your wife needs further testing as I know you're aware. She only received the most basic of tests. I wouldn't even call them tests. The questions the doctor asked your wife are the same questions paramedics ask of their patients to determine their state of mind. I would expect a neurologist to delve deeper than that.
I hope you go to another neurologist. Find a friend or a friend of a friend who can recommend a neurologist to you. Ask around. Do some online research.
I agree with your not continuing the medication but hang onto it. Start from square one with another (saner?) neurologist.
I don’t think any amount of testing is going to give you and your wife a different conclusion but more testing may better define what type of dementia she has.
It’s quite common for people with dementia to not realize it or accept the fact. Depending on your wife’s current cognitive abilities you may or may not want to try and explain that she has dementia.
With my father, it wasn’t worth the hurt feelings and arguing. He always refused any testing. His dementia started at about age 80 and has now progressed to a 10 second short term memory but he thinks he’s just fine. He’s 87 now. And he was like that at the very beginning as well.
This is going to be very hard. There’s lots of good info on this site about dementia. Start getting informed. Good luck to you.
Thanks
Tim
We are in the process of going through diagnostic testing with my Mom. She dislikes all the appointments, but trusts us enough to see the value. Her PCP (who specializes in geriatrics) wants the results of the test before prescribing meds, because different meds can work differently for different types of dementia.
Good luck on your journey.
Change to a different neurologist, if she'll go. You may want to say it's just a doctor's appointment. I'm sorry you had such a bad experience.
I would contact the neurologist that you saw and tell him that he exercised very poor judgement in forcing you to answer in front of your wife. Tell him that it may have impeded her treatment and that you are changing doctors because you don't want an unprofessional attitude like his.
This is total layman’s opinion but I’ve seen nor read anything that convinces me these drugs are effective. Dads doc agreed.
No matter what label you have for her behavior, from here on out you are going to have to deal with the symptoms that present themselves.
You are right in your research. Current dementia drugs, developed with very little knowledge of what causes the various types of dementia, are not very effective overall. They can be very helpful for some people, and I personally think it worthwhile to carefully try them, but to discontinue if your loved one isn't one of the small percent who benefits. My husband had Lewy Body Dementia and Aricept eliminated hallucinations. It was very worthwhile for him, but it doesn't work like that for everyone. NONE of the medications on the market slow the disease. The dementia will continue at its own pace within the brain. If the drug helps the symptoms, the decline will not be so noticeable, but at the point the progress gets too severe for the drug the decline will show up. That help with the symptoms may be very worthwhile, but it isn't really touching the fundamental causes.
People with dementia have symptoms that are not unique to dementia, and most doctors will try drugs that were developed for other conditions with those symptoms. For example, medications to deal with anxiety or depression may be prescribed. These, of course, do not improve the dementia or slow it down, but if they address a symptom effectively they can be beneficial (in my opinion). For example, my husband's anxiety prevented him from sleeping through the night, meaning I could not sleep through the night. This was not tenable, and it was either get that solved or place him in a care center. His neurologist and a sleep psychiatrist conferred and prescribed something that worked! It did not cure his dementia but it certainly contributed greatly to his quality of life for the ten years he lived with dementia.
And that, I think, has to be the primary focus of caring for someone who has dementia: helping them experience the best quality of life that is possible for them.
That you are doing a lot of research is awesome! Season those results with real-world experience. This is a great site for comparing notes with other caregivers. Even better is a local in-person caregiver support group for people whose loved ones have dementia. This is one area where knowing the kind of dementia can be useful. If your loved one has vascular dementia, it is most helpful to meet with other people whose loved ones has vascular dementia, for example.
Dementia is hideous anyway you look at it. I think it is particularly hard when it is your spouse who has the disease, and extra hard when it comes on early. You're experiencing a double-whammy. Be good to yourself. Get support from all the sources you can locate.
Come back here often. Many of us can relate to what you and your wife are going through.
it.
Tim
One thing that I did notice was that you said that doctors noticed something was off with your wife and that Others had noticed. If others are noticing, especially, doctors, I'd tend to believe that her decline may not be as mild as you suspect and pending further study, I'd evaluate if her continued driving is prudent. You said that she was still driving to a few places. I'd really read a lot about how terrible things can happen with people who have dementia and they lose control of physical and/or mental faculties while driving. She could get hurt or hurt others. Plus, there are liability issues.
My LO had her Primary diagnose her with significant Vascular dementia based on an office mini evaluation, due to how progressed she was. And then soon afterwards a Neurologist, diagnosed her with vascular dementia in his office after another eval and physical exam. He said he wasn't postive what was causing the dementia, but, further tests could rule some things out. He scheduled MRI and a neuropsychological exam. At least we were able to rule out brain tumors, fluid on the brain, etc.
It may be that you have no real reason to know exactly what is causing the condition, but, later on, some family members have the desire to know the rate of progression, what is normal, what to expect and if you know what type of dementia, Alzheimers, Vascular, Lewy Bodies, etc. you may be able to get a little more insight into the condition, but, that's not a guarantee. I was rather relieved that we got a diagnosis for my LO, because, her prognosis is different from someone with Alzheimers and I find some comfort in that.
Find a caregiving company to help you get better resources. They can even send someone to the doctor appointments with you to help you navigate the unfamiliar territory, which is what I do with Mom, since I'm in no shape sometimes to digest all the info thrown our way, and that is with NICE nurses and doctors.
My Mom's Dementia started out like your wife's, and yes, when she got stressed or upset, her brain function immediately went down.
I have no family in town so I really have not have anyone else to go to the Doctor with me or provide any help.
The Doctor said Dementia and Alz were one in the same...
We are in a small town and remote (100 miles) from a larger city...but I think I need to get our Primary Doctor to recommend a different Neurologist.
She did have an MRI and the Neurologist said it did not reveal anything and stated that Dementia/Alz is not discovered from a MRI but by symptoms only.
I am still working and retire April 2nd...I really don't want to start med's until I can be home full time to make sure she does not have problems.
Thanks,
Tim
ALZ is one kind of dementia -- there are about 50 other kinds! More than half the people who have dementia do have the ALZ type, so it does get the most attention. ALZ is always dementia, but dementia is not always ALZ, if that makes sense.
Try to find a neurologist who specializes in dementia. Even if you have to drive some distance it may be worthwhile. You probably won't be having frequent appointments in any case.
We also have a retirement trip planned for the end of April too...
I wasn’t surprised with the diagnosis...I was already pretty sure as to what was going on...but for some reason it is
so real now.
Thanks
Tim