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.
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.
Read: "The 36 Hour Day". It will give you a few "aha" moments!
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.
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!!
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.
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!
I would appreciate any input from you Jeanne!
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!
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.
Mom only weighs around 102, but is 4 " taller than me. So it takes all my strength to haul her out of the wheelchair and into the car 4 days a week. It's especially difficult when she stiffens up her entire body and won't bend to sit down.
I have been suffering from RLS for over 20 years and have been on Requip for the last 7 years. It's dopamine, the same thing used for PD and I'm really afraid that I will be my Mom in 15 years. It's not a happy thought to live with.
Living through this with my mom, like so many of you, we see symptoms come and go, change and evolve, respond to treatment or not, and behavior that sometimes leaves us feeling defenseless and overwhelmed. One thing for sure...it is apparent that no matter if a true AD or VD or Mixed Dementia, all we really have available to us right now is the ability to treat the symptoms with the approved drugs for VD and AD, and support those with meds for the depression, anxiety, paranoia, mood swings, sundowning, etc. and hang on tight, and to each other. A good neurologist should be able to choose the right combination, and find a good balance in the meds so that our loved ones are safe, comfortable, and most certainly NOT OVER MEDICATED. Mom's doctor is great, and has tried different combos in small doses until found the right mix. We both know that in time that mix will have reached is max ability to help, and then we change the plan. I think the most important thing is that no matter what the diagnosis with any of these diseases constant evaluation and change in a care plan is critical.
Thanks for all the great conversation.
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!!!
Deefer12, you only mention two meds. dabs4mom mentioned anxiety and depression, paranoia, etc. Your mom might be suffering from one of those, and in her dementia it shows up as OC. I know my husband, who has LBD, get a worried and asks questions over and over. He is better with an anti-anxiety med. As jeannegibbs said, the only option we have is to treat the symptoms.
One motivator to cut down yourself, google the relationship in developing dementias and sugar intake and other junk food. Here is a link for starters:
http://health.msn.co.nz/healthnews/8525112/eating-junk-food-could-cause-dementia
Glad, Yes, I try to tell everyone dealing with dementia patients to cut out the sugar!!! If we can get "brain fog" can you imagine what it does to someone with dementia? I have seen what it does and can do and have since convinced the CNA that helps with Mom that it is true! She has 15 years experience working with Alzheimer and dementia patients and never heard of the correlation between to two! She knows now and has stopped bringing Mom sweets from home.
Sugar may fatten up a normal person, but with my Mom, it just made her crazier and it burned off all the good calories we were putting into her.
Well... my brother should be arriving at mom's any time now. I have been dreading this visit soooo much. I told him that I wouldn't see him until I picked him and mom up on Friday to go to her doc. appt. Of course mom is already a basket case because she's sure that he's coming down so that we can put her away. I've been so stressed these last few days. I talked to my brother on Sunday and he starts telling me how the GC talked to him and when he asked how mom was doing she told him that he'd see a difference since his last visit, but that she's doing well. I adore the gal, and know she loves my mom so much, that it'll be very hard for her to see mom get upset and carry on when we do move her. She told me that she was so worried about her having a heart attack or stroke because she'll be so upset. Of course, if she told my brother this he'll again try to put off moving her. He all but called me a liar on Sunday when I told him about things that had gone on over the past couple weeks. Two of my mom's neighbors were over and I guess mom went into her melt down, telling them that I want to put her away, and that's why my brother is coming. They of course told her that they thought she was doing great, and that she had Maria(CG) and they think she should be able to stay in her own house. They told Maria that I'm too involved and that I worried too much. Really???? Mom can't remember to flush the toilet anymore, or take her meds unless someone hands them to her and watches her swallow them. She wants to wear the same clothes everyday, and refuses to use either her walker or can like her doctors have told her. She argues with the CG about everything because even the suggestion of doing something she doesn't want to do set her off. She doesn't use the walker even in front of me, and if I bring it up there's an argument. Don't you know that Maria told me that mom has been using the walker since Mon. Of course she is..... I'm beginning to think the she is feeding mom the line about us (ME) putting her away when I brother comes and that she better be good or else. I think I'm caught between a rock and a hard place.
I'll catch up with ya'll when this nightmare is over.... he's leaving on Monday.
As for the mini-mental exam someone mention, I read somewhere that by the time you test low on that you are pretty far into dementia. I found a website that has a self-administered test that is supposed to catch it earlier. I wonder why doctor's don't use it, unless they think it is better to not know sooner. There are four versions of the test. I take one every few months to make sure I'm not loosing my mind. Here is the website if anyone else is interested in checking it out: sagetest.
Other thing that has been connected to dementia is chemical exposure. The VA covers Agent Orange exposure, which they have linked to Parkinson's and it has a dementia component. The VA is also doing a study to see if there is a link to other chemicale xposure to other neurological disorders. I wouldn't be surprised by that either, since so many of us Baby Boomer grew up with the beginning of chemical use, when our houses and our food were fumigated, and they still are, but they tell they are currently using safe chemicals. Really???
They are also making some links between dementia and viral. Google Alzheimers and herpes simplex or go to HIV-associated dementia in NeurologyNow. It makes some sense, when you consider what a bacterial infection does to someone with dementia.
So many links yet so many dementias. Who knows, maybe its a combination of stuff. But too much of anything is not good for you and maybe sticking to organic foods is a good idea too.