Who can determine the diagnosis on the type of Alzheimer's/dementia?

The first time we got a diagnosis for my mom we were told it was "99 percent" certainty was Alzheimer's. Then after brain scan tests were done, we were told she had had many tiny little strokes in the base of the brain (where Parkinson's originates, I believe), which made it "vascular dementia." (Those first two diagnoses were given during a 2-week hospital stay a few years ago.) Then, after about 6 months, upon followups with a neurologist who had seen her over the years, he gave us the diagnosis of "mixed dementia," explaining that she definitely had "vascular" dementia and that she also very likely had an overlap of Alzheimer's as well. She definitely presents more as vascular dementia then Alzheimer's, though who knows how it will look 6 months, 1 year or farther down the line. None of them seem any better than the other and every person who has a form of dementia needs to be handled in an individual manner. That's what it seems like to me, at any rate. Do all the research on dementia that you can; read all the books and literature you can; and then try to meet your loved one where they are. You will never make them well; you can only try to make them and yourself as comfortable as you can. Good luck.

Hi all,
I have had a professional career with hospice, and in senior long term care. Needless to say I've seen ALZ patients at various stages and with different "names" attached to their condition or behavior.
My mom was diagnosed with vascular dementia as well as having a brain MRI that showed shrinkage in the frontal and parital( top) part of the brain. Brain shrinkage in the elderly is a natural part of aging, but the speed and degree to which the brain shows that shrinkage can lead a doctor to assume that the dementia is definately ALZ related. Most forms of progressive dementia lead to ALZ. A good neurologist trained in ALZ can become very accurate at determining if the dementia is likely to be true ALZ. The only way it can absolutely be diagnosed is if an autopsy is done after death, and there is evidence of what is called ameloyed plaque deposits in the brain tissue. I know first hand how difficult it is to deal with the progression of the disease from a personal standpoint. I used to speak with many families about the stages of the disease, and what types of care approach would be best and when, but when it comes to my own mother I struggle with the idea of what needs to come next. Right now she is still at home with a caregiver during the day until about 7pm. She is a gem, and loves mom to no end. She also knows that mom is now to the point where she is noncompliant with taking her meds if they're not handed to her, and refuses to follow other doctor orders that are important for her other health issues as well as her safety. The cost of bringing in more help will be more than moving her to a very nice assisted living. She would have 24/7 supervision and peers to interact with instead of being alone most of the time with the CG. It's not possible for me to care for her in my home, as she'd be alone a lot here with us as well, and I'd have to have someone stay here with her when we were gone. Besides, she doesn't want to leave her own home, which will make moving her to AL difficult.
As others have said, learn as much as you can, stay connected with others that are going through the same thing, and by all means spend as much time as you can with your parent, because things can change literally over night. Cherish the little moments even if they seem childlike. Try to move through the times when they get nasty, mean and say awful things, because that truly isn't your parent, it's a deep seeded change in personality that can be part of the disease process.
Hang in there. and keep in touch.

Somewhere in my research I read an into that stated: "If you know someone with Alzheimer's, you know someone with Alzheimer's." This refers to the individuality and complexities of this disease. After 8 years of grasping for insight by observing and reseaching Mom's tests, behaviors, diagnoses, etc., and trying to figure out what's next, I understand that it is a "focus and act on the specific need of now and today" and "proceed with a non-specific, very generalized, flexible plan for the undeterminable expectIons of the future." This is not to be taken as a defeated attitude but rather to reassure you. Your patience and acceptance and companianship will enable you to see what is needed at each curve and you will be able to make necessary decisions (some not so easy) to accommodate each stage as it develops. Don't worry so much about the future or you may sabotage the time you have now to get to know and understand the immediate needs of your loved one. (If you are a bible person, read Matt.6:34)

Your husband sounds exactly like mine! He has trouble with sentences, often uses the wrong word, and knows who people are. Mine also has trouble following instructions or learning new things or dealing with changes, which were actually his first symptoms. He usually understand what is going on, if it's not complicated, but has trouble saying that he understands. Guessing what he is trying to say is incredibly frustrating for him and me!!

Mine was diagnosed with Lewy Body Dementia, the second most common dementia, which has some Parkinson's like symptoms. It took me 7 years to get him diagnosed, but when I got him to the right doctor it was immediate.

His dementia came first, but when he started having a tremor (a Parkinson's symptom) a chiropractor told us to consider Parkinson's and told me to ask the local Parkinson's support group. They pointed me in the direction of the right doctors. The first one was at a movement disorder center that was afiliated with Parkinson's, but also addressed other movement disorders. It wasn't exactly Parkinsons, but they knew the difference and were able to treat it. The first neurologist (an MD) he saw there refered him to a neuropsychologist, a PhD, who did an all day cognitive test to confirm that it was Lewy Body Dementia..

People with Parkinson's usually develop dementia later in their disease progression. With Lewy Body, the dementia comes first and then the Parkinson's like sysmptoms. Which comes first, makes a huge difference with the diagnois.

We recently switched to the Veteran's Administration hospital, and the diagnois was confirmed by another neurologist and another neuropsycologist.

It is very important to get the correct diagnois, because Lewy Body Dementia (LBD) responses well to some medications and Alzheimers doesn't. There are also some meds that you should NEVER give LBD, because they cause irreversible damage. They are meds that are often given to people with dementia, who are behaving badly.

There my be other doctors, who can diagnose this, but my advice is get thee to a neurologist!!

I can understand and relate to your frustration. I had such a terrible time getting my mother seen for a diagnosis, since everyone denied she had it. After diagnosis, there still is no clear explanation of her condition, I think it is because the doctors really don't know enough, I thought a doctor would sit down and explain things to me clearly, it seems any information that I have acquired I had to sit and do the research myself and come to my own conclusions, very irritating.

A neurologist where we used to live diagnosed my husband with Parkinson's about 18 months ago. He also started showing signs of dementia within a few months. Last December, he really started having major problems with dementia/psychosis/hallucinations, etc. When I took him to the ER (which then-neurologist said to do because of the hallucinations), they mentioned Dementia with Lewy Bodies. I started researching online. After another visit with the neurologist we were using, I felt that nothing was being done. We also had an appt with our regular family dr, an internist, as a result of the ER visit. She suggested a 2nd opinion with a different neurologist. This guy sent my husband for all kinds of tests: MRI of the brain, EEG, carotid artery ultrasound, neuro-psych exam (which required 3 visits including a 3-hr test), blood work, PT, OT and a meeting with a speech pathologist. After meeting with the neurologist again, he confirmed Parkinson's and Alzheimer's which is also what the the neuro-psychologist said. As tooyoung said above, a lot of what is diagnosed is determined on the "chicken or the egg" concept: which came first...the tremor or the dementia; are there hallucinations with it? when did they start...before or after the start-up of carbadopa/levadopa, a common Parkinson's med. Since my husband is on the Exelon Patch, carbadopa/levadopa and Lexapro, he is better...not cured, not "normal", but better than he was 2 months ago when I though I'd have to put him in a facility even though he can still shower, shave, feed himself, dress himself, etc. I was frantic! It's better, but there are still changes in his behavior and personality that are frightening. I feel like I'm walking on eggshells all the time because I can't figure out what triggers his very negative reactions. This is a very frustrating, time-consuming and costly journey. Hang in there! We're here to listen and tell you what we have learned from our experiences. Call the Alzheimer's Assoc, call the Dementia with Lewy Bodies Association, call your local mental health group....don't give up! There is help out there and there is no way to be absolutely sure what is going on because so many times the patient does have a combination of several different types of dementia....it is only by trial and error in medication can the right combination be established....you will learn more patience that you ever thought you were capable of....and all of these places will offer you help, support and information. Good luck and God bless!

Dabs, Mom has been on the same med combo for about 2 years now and it seems to continue to work as well as we can expect at this point. I recently changed her diet by eliminating most sugar. Got plain oatmeal instead of flavored, got rid of cookies and other desserts and sugary cranberry juices. She is remarkably more alert and her cognition is much better. I give meds to her with applesauce and now buy the unsweetened. I get "light" cranberry juice and cut it with water like I always did. I buy no sugar added canned fruit and fresh bananas and light yogurts for desserts and snacks.
The difference in sugars in these products amazed me! Applesauce is 20+ grams of sugar where unsweetened is 10 grams. Oatmeal is 0 grams and flavored is 12 grams. Cranberry juice is 36 and no sugar added is 39!!! Light juice is 12grams!
I now add applesauce, bananas and canned peaches to her oatmeal and when I make pancakes, I cover them with the cottage cheese and fruit combos. She is definitely better off without all the sugar! Less problems with UTI's also, as bacteria loves to feed on sugar.
The paid caregiver was feeding her all kinds of sweets and desserts to "fatten" her up, but I noticed Mom was getting worse than usual. I told her to stop bringing Mom glazed donuts and other junk like candy bars, but she would still sneak some in occasionally. Finally, after being fed way too much sugar in one day, Mom crashed and was acting really strange. So I put my foot down and got rid of all the junk in the house and checked labels on everything I buy for Mom. Within a week we all saw a drastic change in her personality and cognition. She is still in late stage dementia, but can now function so much better without the sugar. I have since read up on the subject of sugar and the affects on dementia patients and am glad i made the decision to cut most of it out of Mom's diet. Now I need to get it out of my diet!!!

For the question of who makes the diagnosis of dementia and which dementia it is (so far 48 different diseases have been identified and each of these have subtypes), you would look for a geriatric psychiatrist, a geriatrition (an MD specializing in aging) or a neurologist specializing in dementia.
The dementias are ordered in number of occurrence, so the largest disease group is Alzheimer's (official name is Dementia of the Alzheimer's Type or DAT) -- 4 subsets, Lewy Bodies Dementia -- 3 subsets, Vascular Dementia -- 3 subsets, Frontal Temporal Dementia -- 9 subsets, Parkinson's Dementia -- 2 subsets, Wernicke-Korsakoff Dementia (alcohol dementia), Huntington's/Huntington's Chorea -- 2 subsets, Creutzfeldt-Jacob Disease, etc. This grouping of dementias account for approximately 92 percent of all the dementias.
It is recognized that different presentations of disease behaviors alert physicians to specific dementias. A full battery of testing for any dementia would include blood work specific to dementia, PET scans, EEG, EKG, CAT scans, MRI, cognitive exams, etc. Dementia is not diagnosed by a simple set of questions. (A definitive diagnosis for Alzheimer's can be made with 100 percent accuracy through a spinal tap.) For a doctor to make a diagnosis, he or she takes the symptoms presented, the results of testing, rule out everything it cannot be and the end result should be the correct disease. Without a spinal tap for DAT, the diagnosis is still considered to have a 96-98 percent accuracy if the full battery of tests were completed.
But many of the behaviors you describe would point more towards a Lewy Bodies dementia. And LBD is most commonly misdiagnosed as DAT several times before a correct diagnosis is made. LBD frequently has a Parkinson's attachment, which is not understood, but is recognized. In some people, PD presents first, followed by LBD. In other people, LBD is diagnosed first and the PD symptoms begin later. Some people do not develop the Parkinson features.
Mixed Dementia is a subset of Vascular dementia. It means damage from stroke activity (large, medium or smalls strokes or a combination of strokes) has caused Vascular dementia and now Alzheimer's has crept in as well. Therefore this dementia is a "mix" of two dementias.
It is not unusual for people to have more than one dementia. And it is not
uncommon for a person to have features of Alzheimer's as well as other dementias. Research is indicating that if a person has one form of dementia and lives long enough, Alzheimer's creeps in as well. This is believed to be due to the failure of the Tau protein found within the cell structure and this collapse of the Tau protein is common in many forms of dementia.
As for the mini mental status exam -- the MMSE, this exam was developed to check for orientation, not cognition. By the time a person scores poorly on this exam, the dementia process is typically quite advanced. Doctors continue to use this test because it is the test insurance companies recognize and pay for during the doctor's examination. A more useful testing tool is the SLUMS test or St. louis University Mental Status exam. This test was developed specifically to measure for cognition and is available to download.
By late stage five on the DBAT (dementia behavioral assessment tool) all dementias begin to be very similar. This is because the damage to the brain, regardless of the type of dementia is significant. Stage five people for example have lost 1/2 pound of brain tissue in the beginning of stage five, but a pound or so of brain tissue is gone by the end of stage five. People with two pounds or less of brain tissue tend to have similar behaviors and declines towards end of life, which is why late stage five, stage six and stage seven are about the same for any person regardless of the type of dementia.

Fifty percent of people over the age of 80 have memory difficulties, ninety percent of those are Alzheimer's. The Alzheimer's type cannot be confirmed until after death with an autopsy of the brain. Alzheimer's does not show on MRI or CT scans. In my mother's case the doctor said it was either a series of mini strokes or Alzheimer's. I'm not sure how he was able to reach that conclusion.

Hopefully, with all the research that is being done and proposed they will find the cause (I personally believe that there isn't a single cause, rather a combination of many different contributors), develop a process for diagnosing one dementia from another and maybe, hopefully find a cure and recommendations so one does not develop it.

her depth perception is almost gone now.She reaches for things that are too far away for her to get and just sits there with her hand out trying for sometimes an hour or more to reach for something she can't. She had many falls at the beginning due to crossing her legs at the ankles when she would stand up and turn. The hallucinations started after being treated with sinamet. I don't remember her having confusion and then being okay. She had major depression and lots of anxiety attacks which would incapacitate her something awful. She could no longer go to the grocery store with me as she would have an attack and hyperventilate and drool, and her nose would run and she would just get that "mask" look that I just read about on that site. She would get up not long after going to bed and be so quiet, I wouldn't hear her, When i would check on her, I would often find her on the floor where she had fallen and couldn't get back up.
she had 2 bad falls that sent her to rehab and after the second time, I quit my job to stay at home with her. that was 5 years ago this May.
So with a quick scan on that site, I am more confused than ever! I know she is at the point where nothing will help her now, although she does very well on Aricept and Namenda. We tried to take her off them due to her advanced state, but she was totally gone without them. Once she was back on, there was noticeable improvement. I tell people all the time that if a doctor tells them these meds won't help, try them anyway. Most people I know that are taking them do much better.
I have to say the worst for me is the OCD traits, as they are constant and never ending and enough to drive a person insane!!!
Thank you so much for your input and I will talk to her doctor when we see her in May.