I am so confused as to what type of AD my husband might have. He was diagnosed three and a half years ago. Since then we were told he is starting parkinsons and that is just recent. I would like to know exactly what type of AD he has. The more I read about AD and the different types leaves me confused. My husband sometimes has a hard time communating, his words are not full sentences. This fustrates me because I can't determine what he wants me to do or fix or is he looking to eat etc. He still knows who I am and knows the family.
By reasearching and going to classes on AD has educated me somewhat but I would like to know more.
In the early stages of dementia, seven years ago or so, did her level of cognitive skills vary greatly? Sometimes nearly normal and sometimes very confused and irrational? Did she have trouble with depth perception -- hard time judging how to step over a threshold, etc.? Did she ever act out her dreams? Did she have visual hallucinations early on?
When there is Parkingson's there are Lewy Bodies in the brain, so it is reasonable to ask if the dementia symptoms might be from that. Since she sees a neurologist regularly I think I'd bring it up with the doctor. As I said, though, at this point it may just be academic. Managing her symptoms may be pretty much the same regardless of the type of dementia.
If you do talk to her neurologist about the possibility of LBD, let us know what you find out. We learn from each other!
I would appreciate any input from you Jeanne!
I hope I don't sound like I'm trying to diagnose your husband or that I want to push the LBD diagnosis. It is just that since it is now clear there are protein deposits in your husband's brain, I'd sure ask the neurologist is LBD is a possibility.
And by the way, just for clarity of terms, AD is a type of dementia. If the neurologist has said specifically "Alzheimer's" (instead of the more generic "dementia") then you do have a diagnosis for the specific type of dementia. But given new evidence, such as the Parkinson's symptoms, it is appropriate to revisit the diagnosis.
Good luck!
When autopsies are done and compared with the doctors' diagnosis before death, it is clear that the diagnosis accuracy rate is terribly low. This is less surprising when the doctor was a GP not particularly experienced in dementia, but it is also true of reputable centers specializing in dementia.
Of course there is not an autopsy done on all persons who die with dementia, and our confirmed knowledge of things like the percentage of cases with mixed dementia and what the most common combinations are and what percent of dementia patients have Alzheimers and what percent have Dementia with Lewy Bodies etc is all based on the small percentage who have autopsies. And when you read statistics that are based on pre-death diagnosis, remember that a large percent of those are found to be inaccurate. So our knowledge of how to diagnose dementia is not where researchers (and all of us!) want it to be.
Which isn't the answer you want to hear, lexi2011, but the fact is it can be very difficult to come up with an exact dementia diagnosis.
Because your husband has Parkinson's, it is logical to look into Lewy Body Dementia. Persons with Parkinson's have protein deposits (called Lewy bodies) in their brains. These deposits can cause the symptoms of Parkinson's and/or the symptoms of LBD. There is a pretty straight-forward list of diagnostic features for LBD. If the patient exhibits a certain number and certain combination of them, he would be considered to have either "possible" or "probable" LBD (depending on the number.) You can find this list on the website of the Lewy Body Dementia Association. http://www.lbda.org
While I think it is logical to consider LBD when someone with Parkinson's also has dementia, I don't mean to imply that is the only type of dementia that can occur with Parkinson's. Just that it is worth looking into.
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 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.
Read: "The 36 Hour Day". It will give you a few "aha" moments!
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.