When my wife was diagnosed with AD in 07, her internist and a neurologist came to different conclusions by looking at the same MRI. I got hardly any assistance from either of them as to what to expect from the future. We moved to MA two and a half years ago years while my wife was still early enough to be moved with minimal trauma to be closer to our daughter. Internist here cares less and the neurologist wanted his own tests done but I get little to nothing in terms of feed back. A couple of weeks ago he suggested we might want to get in to some clinical studies. One web site he suggested we look into has a study being conducted by Fiezer. They were looking for patients in the early to mid stage. My best guess (according to the Fisher Foundation Websites) is that she is in late stage- into stage 6. No "professional" has told me that. I came to the conclusion by looking to various websites and groups such as "The Alzheimers Spouse". I have come to accept that my wife has a terminal illness. I know that some 'experts' exist. Fisher foundation and Alzheimers foundation websites have proven helpful. But tell me: Do any of you have a personal physician who knows more than you do about this disease?
Yes. I had the regional geriatric specialist following our case. The GP did not. I was also encouraged to get into clinical trials and I know that helps develop drugs but I wasn't willing to either subject her to it to be in a control group or try something that might harm her (she's strongly affected by medicines).
One of the main points of this site is that with all the different experience directly with the disease we help each other out. A lot of this rests on the spouse's shoulders unfortunately.
Years ago the Alz Assn did a survey asking caregivers the question you ask - and most said that their doctors did not know more than they did. I don't think much as changed. Are you talking about the cause? About medications? About caregiving? About the science of why brain cells die? About genetics? About illness duration? About symptoms? About ---well, about anything? It is the nature of the illness to be elusive and a specific diagnosis is difficult to get without a brain tissue biopsy usually done at autopsy. Then it may be that it was not AD, maybe it was vascular dementia (VaD), frontotemporal dementia (FTD), or Lewy Body disease (LBD), or something else entirely. Some people are deep into tangles, plaques, tau & blood flow/oxygen, etc. I leave that to the scientists but info about it is all over the Web. Most caregivers (CG) get bogged down in caregiving and places like this will help you more than any doctor or other 'expert.' Your guess that your dear wife (DW) is in stage 6 is as good any anything you'd get from another doctor's exam. It's all 'by guess & by golly' and it has been famously said that 'Once you've seen on person with Alz, you've seen ONE person with Alz.' You might ask others here about clinical trials and do some research on that, there's a lot involved. Will you get the drug or placebo? Are there a lot of physical and blood tests? Will your DW cooperate? Are you willing to drive & be available on their schedule?
As for your original question - yes, there are experts usually associated with a major hospital or university memory clinic. But they don't have all the answers, because going after AD is still in its infancy. Not all that much is yet known. But progress is being made--at least for coming generations, we hope. Meanwhile, please stay around and ask questions. The best help you'll ever get is from those who have already made the journey. Welcome.
Sadly no . . . . I dont get it, even the experts have been little comfort to me. In the earliest stage (age 56) We went to our PCP and without ANY TESTING and the doc said "it is Alzheimer's" and we walked out of her office with a sample packet of Namenda. (Hey doc, Aricept is the first drug!!)
I then arranged to go to a large university specialty center to confirm the dx and after 3 days of testing they had the big family conference and said "We THINK she has AD but only an autopsy would be sure" I said what do you mean THINK??? Again they refused to 'confirm' it was AD.
We tried the research thing. (ADEAR study) The diagnosising center said she was too far along for the study, another big center said she was not bad enough for the study and the third said she did meet the qualifications(!) All within 2 months of each other and all for the exact same study.
Our current docs (new health plan) are very helpful and will prescribe whatever I need but NO, they have not talked to me about the disease or the process. I have studied it all on my own (lots of reading from many different places). In order to get approved for Family Medical Leave at work I needed a doctors note. I wrote it and he signed it. I included the text that my wife has a terminal disease. (cause I already knew it) and the Dr brought out and signed the DNR forms and put them in the chart. We didnt discuss anything, I already knew the process.
I really think that the dementia thing is something you need to experience daily to really understand it and doctors just dont do that.
O agree with Wolf...my DH's GP doesn't know poop about ALZ. I say this because I know that our neuro sent reports to his other doctors about his condition..I have copies of these letters! So when his GP kept on and on about losing wt when ALZ will take care of that, I knew without doubt the GP knows what ALZ is but not a clue on it's progression..Now DH is truly more at his "fighting wt" so the GP has finally shut up and I do what I can to keep him at this present wt no matter what the GP may say in the future. The only ones IMHO who are experts at this disease are US, we caregivers who are on the FEBA ( front edge of the battle area)...do the congress critters in DC know what really goes on on the front lines in any war? NO the generals and colonels and staff NCOs do... We are the experts!! WE know what we see going on, we are the ones who figure out how to solve the problems...we are the ones with the battle scars.
In terms of doctors, you need to look for a dementia specialist. This includes neurologists, most are not familiar with dementia. Geriatric doctors often have dementia experience, my FIL's GP has been explaining my wife's ftd to him, his gp works mostly with older patients and thus has the background.
What is so lacking in the states is referrals to social workers to help the families. While medicine is lacking in what it can do there is a greater need for family support. Something which I haven't seen.
Our neuro-Psych Dr., at our firrs visit tld me, "Youare the best tool I havein treatig yourz husband. You have him 24/7., I can't hget close to that knnowledge in an Office Visit." I was so relieved to know I would be heard, regarding DH's condition, it never registered that it meant I was an expert." What meant most to me was that we finally had a Dr. who "had a clue".
vieu Corbeau: I happen to fortunate, our PCP is Board Cert. in Internal Med, Geriatrics, Hospice and Palliative Care. He is uniquely qualified and capable in treating AD
When he initially Dx'ed DW in 07 he referred us to a Research Neurologist who specialized in AD. The Neurologist was actively engaged in several experimental drug trials and he has been used by several other members of this site. The experience of subjecting my DW to the testing which was part of being a guinea pig was in my opinion a horror.
One drug she was on proved to be statistically beneficial to her and a small fraction of the test sample nationwide. Not enough participants were helped to make the drug a financially viable for the drug company and there was no "compassionate use" medication made available to those who benefited, nor was there any source for the medication world wide, I spent a great deal of time and money seaching. After that experience of nearly a year of feeling reborn only to see it snatched away we “disengaged” from this neurologist and returned to the care of our PCP with the full understanding, like you, my DW has an incurable illness.
Long ago I concluded that testing and evaluations by Neuro's & Geri Psyche's to determine what stage she was in were of no consequence or benefit to anyone. but the provider. All they did was increase the thickness of my DW's chart file, and justify a charge to Medicare. DW received no benefit whatsoever.
Realistically, all we can hope for from our Md's is expertise in managing each new symptoms or behavoir as it appears, precribing the right meds and doing no harm. On that front our PCP has been 100% on target with his prescribing to managing her symptoms. We have a communications system that is fantastic, I fax him my question, he responds almost 100% of the time within the hour, between patients. He also exhibits a great deal of concern for my well being and coping issues, truly a unique compassionate physician. There are some good ones out there
Yes, Marty, there are some good ones out there. DH's PCP is right on with his expertise in prescribing meds for behavior changes also. And, he responds to my calls very quickly, too.
Two visits ago the 'nurse' who takes the vital signs asked my wife how tall she was. Wife remained silent. I looked at the nures and said "You do realized you just asked an ALZ person to remember something dont you?" It must have worked because this visit she did not make the same mistake.
BUT . . . . On this visit wife was in one of her inconsolable crying states and the nurse mentioned to me that 'She seems to be getting worse . . ." I reminded her that my wife can ONLY get worse and that if she did somehow get better, then her whole diagnosis is wrong. Learning takes time.
Very good answers, m-mman. I had the same problem with home health and PT and Nurse who came. Kept asking him question after question, until I stopped them. They seemed astounded. Said they always ask the patient questions. Told them if they just wanted to frustrate him, they could stay the rest of the afternoon with him.
When I visited with DH Dr. a couple of hears ago about the symptoms and my fears, he told me three things that stuck in my mind. 1) "it sounds like Picks," 2) not many of us GP doctors have experience with this (he is an internist), and 3) you be sure to let me know when you need help (meaning things like depression in me and meds for DH). He did not act like he knew everything. He did not tell me that we had to do a bunch of tests. and he did not act like I was making it up. I felt like I was left with an opening anytime I need one.