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I'm looking for feedback from others who have had a loved one go through this process and what to expect.

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My Mom was diagnosed with Memory issues over 6 years ago but showed slight memory problems couple years before that; had an MRI which showed brain shrinkage and has had a mild stroke. She in currently living at a Memory home. She takes Aricept & Namenda. Never had the extensive 4 hr testing done for what type of memory loss she has. She is 81 now and doesn't seem to be progressing much in her memory loss - just keeps asking if my Dad is alive (dead 5 years) and where she's at/when she's going to go home. She's been there little over a year and still keeps packing up her things to leave. Tried two different daycare places; one was very nice - she fought me the whole drive their, but was happy when I picked her up, but was kinda far away. Would have liked to keep her at home with someone coming in during the day while I'm at work, but she fought it. Not extremely happy with where she is for the cost of it, but I couldn't handle the stress of caregiving at home, she lived in split level home and had a hard time on steps.
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We've never taken the 2-4 hour battery of tests because my father denies that he has a problem and I'm not sure he has the stamina for that much testing. I'm sympathetic since I didn't have the stamina for my graduate exams, but most of these posts don't indicate the person being tested got tired. In the shorter tests administered by a social worker at the gerontologist's office, he was asked to count backwards by 7 (which I have trouble doing) and spell something backward (which I also consider difficult). The thing that keeps throws him off the most is when they ask him date, day of the week, and season because, frankly, he's retired and doesn't keep track of that stuff unless he has an appointment or it comes up in conversation. I wonder if medical professionals - on the clock - can relate to this. The best medicine for him is small inclusive social situations in which he can keep track of the conversational flow.
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My mom is the same way; recently, she was in the hospital and the nurse wrote her "fall risk" number on the white board in her room. Mom kept pointing to the board and crying. After reading everything on the board, my brother said "58 mom? Are you worried about the 58?" Yes, yes indeed she was. She thought she was failing something. Oy
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Sunny, keep explaining to your mother that it isn't the kind of test where there are right or wrong answers - she'll get a gold star no matter what. My mother doesn't get nervous about that, exactly, but she can get so scared she won't 'do well' that she doesn't want to answer questions at all. Schooling has a lot to answer for, sometimes!
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Sunnygirl: short answer is yes, at least they SHOULD and USUALLY do. Let them know in advance she's a nervous Nellie, and maybe give her the examiner's picture in advance with a little positive hype. We have to get kids to separate from parents for these sometimes, and they can usually do it - in fact they make a note on how easy or difficult it is.
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I'm learning a lot about this type of examination on this thread.

My cousin is scheduled to have one with a Neuropsychologist very soon. I'm afraid she will get overly anxious, start crying and have a melt down in the room without me. She lives in AL, but I attend all doctor appointments with her. She's very insistent on that as she is very insecure and easily frightened of new situations. She also hates tests and never did very well in school. I'm afraid she will feel like she's back in school and shutdown. Do they know how to handle people like that?
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Truffles, I like the way you think, and I agree with you 100%. I would urge every caregiver who is caring for a loved one with Alzheimer's to read "The Myth of Alzheimer's" by one of the leading neurologists in the country. My daughter asked me to check it out at the library, and I am so glad I did. There will never be a cure for Alzheimer's, and you need to read this book to find out why. In the meantime, the pharmaceuticals are raking in billions of dollars!
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This is a fairly "new" field in the medical profession and there are some doctors who really aren't qualified. The first neurologist I took my mom to just didn't get it. However, we were more fortunate later on in that after finding a wonderful gerontologist, she referred us to a neuropsychiatrist, and both of these doctors just nailed it all the way. Fortunately, we were referred to these doctors by others who had had much success, success meaning finding out what exactly is going on.
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ba8alou, you will recall this doctor was a THIRD opinion, and it was my decision to see this particular physician, who ran a battery of tests on him. The neurologist, to whom our primary physician sent us, who diagnosed him as having Alzheimer's, asked him to name the months of the year backwards, and my husband wasn't able to remember beyond September. Based on THAT test, this "neurologist" ascertained that he had Alzheimer's. The gerontologist had him respond to many questions, both oral and written. I did the right thing; no regrets since he had already seen our primary physician and subsequently a neurologist.
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OK I do not think that normal old age needs to be medicated however when that person is miserable because they are "seeing" animals and attacking caregivers it is time for medication.
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UTI does not usually cause psychotic thoughts all by itself - the inflammation aggravates what is there already and pushes it over the top so to speak. Younger people with UTI just report bladder symptoms most of the time. My mom would get worse cognitively with cellulitis as well as UTIs, and she and lots of people just don't report symptoms at all or if they do it is not in a straightforward way where you could guess what was going on...the other two things that most commonly don't get described well are acid reflux symptoms and foot pain - you have decreased appetite (maybe because it hurts to swallow) or back pain or congestion in the AMs for the one, and just "I'm tired and I need to sit down" for the other, all the time.

Side effects are for real, unfortunately, and some people are more prone to them than others; many of us are more prone to them than others. I hate to rule out all meds for all people like that; I'm one of those people and, I am VERY grateful for the meds I do tolerate and benefit from.


I'll be hopeful that treating the NPH helps, but it doesn't always; if the memory and judgement problems as you describe persist after that and treating the UTI, it could be they really are symptoms of dementia after all...I understand you are sure hoping its not, of course!
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Willows, it seems to me that the docs who specialized in brain function diagnosed your husband correctly. A doctor who is trained in the care of the elderly and not a specialist in cognitive function is not a place to go to counter a dx of dementia from some who specializes in that field. I'm sorry he has this sad disease.
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I would have to ask who referred your mom for a neuropsych eval? Does she live on her own, or with you or in a nursing home? And, how old is your mom? My mom was living in an independent apartment in an elderly community. She fell twice in two days. I insisted that she go to the emergency room. Anytime they fall, a Brain MRI is usually ordered to so if there was a stroke, etc. In my mom's case, the Brain MRI showed too much spinal fluid in her brain which caused Normal Pressure Hydrocephalus. This condition causes memory loss and problems with walking (at some point). My mom's memory problems were not dementia and it was just that she would forget how to use the microwave to heat up the food I brought her, plus other things. Just memory problems but not dementia which is what some would want to call it. She has been in and out of nursing homes to rehab and then come back home to me. We have a problem with that too. In older women, they can no longer articulate the symptoms of a urinary tract infection (it hurts when I pee). I googled the symptoms of a UTI in an older woman and they become delusional and way out there. I had to tell the facility when my mom had a UTI because they did not understand what an older woman's would be. Every time I told them to test her for a UTI because she was talking crazy, i.e., did I know that this CNA washed up on the beach yesterday; did I know that they were performing sex change operations on the third floor of this hospital; that she had read (which she can't even do anymore) that I had registered to have an abortion (I'm 65) or that I had registered to get a divorce, etc. Because of these crazy comments, she has twice had neuropsych evals and they determined that she needed medication and they put her on this medication without even discussing it with me. All this time, she had a UTI and that was causing her delusional comments, not a psychiatric disorder. Plus, if her memory fails, my mom does not want to be prescribed any meds for that. She is a little old lady and has every single side effect of any medication they prescribe. Just make sure you are doing what is best for your mom, even if that is not what the doctors want you to do.
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You can expect a lot of baloney and a lot of wasted time! The more you diddle with doctors, the more frustrated you will become. They don't know squat! After my husband had been diagnosed with dementia by our primary physician four years ago, she sent him on to a neurologist for confirmation, who diagnosed him with Alzheimer's. I decided on a third opinion, as did my husband, who was still able to think rationally at the time. I took him to a gerantologist (I did not spell that right), who deals with elderly people. She had a nurse run a battery of oral and written tests on him, and she said he "passed with flying colors." She said to him, "Nothing wrong with you!"

Well, she was wrong because four years later, he is now holding a fake ticket in his hand waiting for a train to take him home (he IS home). I know more about his condition and what to do for him than a whole room full of doctors.

Don't waste your time or your money! Bleh1
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In my opinion these tests can be very intimidating for an older person and make the person feel nervous and under pressure . I think they are an invasion of our human rights . Old people are being prescribed far too many harsh drugs some of which do more harm than good . Becoming a bit forgetful as we grow old is quite natural NOT a druggable offence. !! There are too many psychologists around wanting to pry into every corner of our lives. Many old people are being exploited by the pharmaceutical companies who have turned old age into a mental illness . I say keep a close eye on your elderly relatives and always check their medications for possible side effects because many are worse than the initial complaint!
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I tell my younger patients that a good neuropsych is like getting an owner's manual for your brain. It gives details of strengths and weaknesses of brain function in much more detail than just an IQ test or MMSE, and a full battery is at least a half day full of both face to face and paper and pencil type tests. In your situation it is probably very worthwhile to help resolve the different perceptions of you and your siblings. It may not on its own provide a specific medical diagnosis but may have a pattern more consistent with Alzheimer's, vascular dementia, traumatic brain injury, stroke, depression or ADD. It will look at different types of memory, attention, concentration, executive function, reasoning, perseveration, spatial perception, and processing speed. It usually can provide recommendations on how someone will learn best in school, and in elderly adults, what kind of supports may be needed. It might or might not indicate that driving is inadvisable; if relevant deficit areas are not terribly severe, a behind the wheel evaluation is still important for that as well. It can provide a really big piece of the puzzle for you.
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What a great series of posts, this is exactly why this site is so awesome.

SoConfused - we've all been where you are and even today - for me basically a decade in my mom's decline it still is confusing. The testing and reporting over time have been wonderful in figuring out what to be concerned about and what to accept is the path of dementia & aging. What is often overlooked is that dementia is a terminal disease. Now it's not usually listed on the death certificate as such, but over time the dementia (whichever type) will lead to a total breakdown of their competency & cognitive abilities if they live long enough. Most with dementia have other co-mobidities - like diabetes,heart disease, cancers - that cause death sooner. But the dementia on it's own, will bring about death. So if the testing can determine which dementia, it gives you a better path of taking care of or being an advocate for your elder.

For us, the testing led to mom being diagnosed with Lewy Body Dementia. She was pretty classic Lewy - the animal hallucinations, shuffling walk, visual disortienation, but she continued to know family and current events for much much longer than someone with Alz would. Lewy is very different in it's disease arch than Alz or FTD for most of the disease process. Exelon works well for Lewy, while Aricept is just meh (& is better for Alz.). Also for Lewy, you have to be super careful on the psych meds, as most of the common ones are totally wrong for Lewy and can cause extreme problems. Knowing that Lewy often has these visual / spacial issues was good, as we could change the lighting & surface textures in mom's IL and then later in her NH room, to make it easier for her mind to process how things looked to her.

The one thing I would do differently would have been to make my mom move to IL earlier than she did. (I forced her to move to IL, lots of dramarama from her on "you can't do this", crying & hand wringing while the movers are shrink wrapping her furniture, and then a couple of days later I called her and she hung up quickly on me as she was late for the bus trip to Steinmart..…) IL & AL's just have so many things for them to do and keep their brains going. For me it seems that if you wait and keep them at home till they are at the point of needing a NH, they just go downhill fast once there. It's a high bar for them to make the transition. In a way it's like having a child and seeing that those that go to early childhood programs, then to PreK then K just do so much better than those who stay at home till K. Those in early childhood & preK know the system: getting their sit-upon, having a cubby, 2 fingers for petting, "little voice", schedule for naps & meals, etc. Its much the same for the elderly for IL, AL & NH. Hopefully you & your sisters can use mom's assets to be able to afford IL or AL for her.
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Good information
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Country mouse - was not mischievous at all... Mom has been told she has dementia and not that we disagree - was just wondering if it was worth the time and effort so she would believe us and her Dr. Thanks though! Your answer was helpful!
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We went to 2 visits - about 4 hours each. I was asked to leave during the cognitive testing and took a book and got a cup of coffee. I went with a friend who was having early memory problems and doing a lot of whacky stuff - dressing backwards, wrong shoes on feet, walking when the light was red ect ect... The diagnosis was early onset Alzhiemers- cause who knows - probably genetic as his Father also had early dementia.
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What we got for mom was a dx of Mild Cognitive Impairment, instructions that she should no longer drive, live alone or try to manage her own affairs (she was already in IL at this point). also, that good food and socialization were of GREAT benefit to her. And an appointment in a year, which determined that whatever impairment she had was not progressive. And when she had a stroke, a couple of months after her last visit, we were able to let the docs know exactly where she had been cognitively and in terms of ADLs before. The fact that she went to rehab and the same institution where she was tested was a boon. Covered by Medicare, btw.
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Debi, was that a mischievous question?! - because you're quite right. At the end of our exhaustive process we got a diagnosis of multi-factorial dementia... probably. Yeah okay not what you'd call fantastically helpful. But a) it gives you a baseline assessment for monitoring developments and b) at least you can rule out a few things. And that's the worst case scenario: being not much further forward in your understanding.
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Lizann, my Mom is 74. She hasn't driven since the middle of May when my sister's took her to the ER for confusion, which she left the hospital with the diagnosis of a bladder infection. It was after that that she went for an MRI. She doesn't work and my two sisters live with her, but they don't really take care of her. They won't make any decisions about her driving again until after she takes this test.
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Question How old is Mom? Is she still driving and working at a job? If not how does she manage if she lives alone? A certain amount of memory loss is common as we age, but does she have coping mechanisms? If she is still able to live her life successfully I don't know if I would put her through a big battery of tests. Yes it will probably show some weakness in memory ---but then what??
What medical dept know about the brain and memory is very little even today with the imaging machines. Plus the elder normally adopts coping mechanisms to help themselves. This is probably necessary for her to be declared having dementia or another form of memory loss. If you observe her daily, you probably already have a decent assessment--what she will and will not remember.
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Several years back, when my husband's primary care doctor suggested that he might have "early dementia," he was evaluated by a very competent neuropsych. Although I was part of the initial interview, mainly for history and observations, I was not, of course, included in the testing process; but I was again in attendance at the debriefing/diagnosis interview. My husband's history included a subdural hematoma and craniotomy 10 years prior to the testing, following which his short-term memory was annoyingly deficient but began causing us more concern in the year or two prior to the consultation. It was my understanding that both sides of his brain were evaluated for functionality, and it was somewhat comforting to learn that any diminution of his cognitive function was NOT Alzheimer's in nature, but rather was "probably" due to a progression of the brain damage he received with his subdural hematoma. And in the intervening time, the actual reason for his increasing cognitive decline has indeed become more clear. While the ultimate diagnosis took more than three years, we now know, following two hospitalizations with Wenicke's Encephalopathy, that he suffers from alcohol-related dementia, or Korsakoff's Psychosis -- which is still not Alzheimer's. So while the neuropsych in our case didn't hit the nail on the head, she did at least reassure us somewhat.
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I have a question for all who have gone through this testing with a family member? What diagnosis did you receive as a result of this testing? Thank you.
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Happy to report that, unlike some of the other comments here, the NeuroP that we were referred to made a house call. After initial questions, I left and he and his associate stayed and tested Mom for just a few hours. Two (2) weeks later, he returned w/his lengthy assessment that she did NOT have or show any signs of Dementia/Alz. So for use, it was a Godsend after many years of GPs, Neurologists, and even Geriatric MDs not providing us w/any useful info or relief. She does have problems processing which has helped all of us deal w/her better. Good luck in your experience. Ask the NeuroP's office what to expect.
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Had the same experience with my husband. Two days, four hours each day. The first day involved a battery of cognitive tests but during that time I was interviewed by a psychologist who went over the 20+ page questionnaire I had submitted prior to the visit. Second day was neurology - didn't take quite so long but the MD sent us for some blood tests afterward. She also referred him for an MRI. One thing that helped was having my daughter with me the first day - she was good company and was able to provide extra insight into the interview questions. The only problem was we had to wait almost four months for the family conference during which the team went over the results of all the tests. They concluded my husband has both Alzheimers and Lewy Body Dementia. We haven't gone back to the University but are fine with our Internist's care. It was a grueling process but worth the effort as it provided a diagnosis and a treatment plan.
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My mom went through these... two visits on her own and then I came for the final conclusions. Be prepared - if your parent is still driving and the tests show that he/she shouldn't be, the psychologist will send a letter to the DMV and pull your parent's drivers license. We were warned about this the first year and the second year I didn't think there were a lot of changes in my mom, but her reaction time was so slow they pulled her license. It was crushing to her and i wish they had warned me so I was prepared to comfort her. The dr. referred us to another test that would be more objective and she failed that too. so in the end i'm glad that we found this out before she hurt herself or another. it started the process to moving her to assisted lviing, and helped make the case for her long-term care insurance to kick in. in reality, this dr was the only one who could help us figure out where my mom's abilities were. the GP and neurologist couldn't really help at all.
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Hours of testing(more like school than medical) for your loved one and a report that will take a VERY long time for you to get that will tell you mostly what you already know.
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