As I’ve written before (here, here, and other places), diagnosing Alzheimer’s disease gets complicated and causes significant confusion. I’m now stuck in the middle of that confusion. My primary neurologist diagnosed mild cognitive impairment (MCI) that would almost certainly progress to Alzheimer’s. But what does this “almost certainly” mean? When I pressed one of my research doctors, on the other hand, he assured me that I had Alzheimer’s.
How does a doctor make the diagnosis? A definitive diagnosis can only be made after autopsy of the brain. In clinical practice, however, the criteria for diagnosis of Alzheimer’s are impairment in memory and impairment in one of six other areas of cognition, but the impairment has to be severe enough to be dementia, which means they must interfere with normal activities of daily living. So since my symptoms don’t yet interfere with day-to-day life, my diagnosis is not Alzheimer’s but “only” MCI.
But this creates a problem. Alzheimer’s is a progressive disease that begins as long as thirty years before symptoms develop. Autopsies of people with either MCI or Alzheimer’s will show the same pathology. In fact, a person can be cognitively normal and still have the pathological changes found in Alzheimer’s. So the disease—whatever you call it—has symptoms along a wide continuum, and it doesn’t make sense to name it Alzheimer’s only when it reaches a certain severity. The medical community, of course, recognizes this problem and is moving toward a new definition based on a whole new set of criteria of specific physical changes in the brain that eventually develop into Alzheimer’s dementia. Those criteria will include even those who are years from any impairment. So people will be classified as “preclinical Alzheimer’s,” or “mild Alzheimer’s,” or “Alzheimer’s dementia.”
But that definition won’t be useful in practice until there are reliable tests, such as brain scans or spinal fluid analysis, that reliably detects and measures those physical changes in the brain. And, so far, the tests haven’t been proved to be reliable.
We’re still stuck with the problem that you don’t have Alzheimer’s until you have developed dementia, that is, until your symptoms interfere with your daily life.
Why should I care?
The statistics for how large a problem Alzheimer’s is count only those with dementia, which means that they grossly underestimate the numbers affected with the disease, unless the reader understands it all. There are probably twice as many people with some degree of cognitive impairment from Alzheimer’s than is usually reported. And that’s misleading.
The current definition also makes it difficult for those with early symptoms to know what’s going on. If somebody is told that he “only” has MCI, will he be falsely comforted? Do I, for instance, have Alzheimer’s or don’t I? Using the current criteria, I don’t. Using the more inclusive criteria, I probably do. What do I tell others? The subtitle of this blog is: “A Memoir from Inside Alzheimer's Disease.” Is that misleading? Or should I go through the whole spiel every time I give a talk or lead a discussion? And if I did, wouldn’t that confuse people even more?
Can MCI sometimes be a separate diagnosis? It’s unclear. Certainly the vast majority of time, MCI develops into Alzheimer’s or one of the other known dementias. But, for instance, the Mayo Clinic writes that “some people with mild cognitive impairment never get worse, and a few eventually get better.” But that doesn’t make sense unless MCI is a separate, non-progressive disease, and I can’t find scientist suggesting that.
As Alzheimer’s loses its stigma, more patients with MCI will present themselves to medical people, renewing interest in the questions around MCI. Let’s hope that that murkiness around mild cognitive impairment will clear up soon.
- aphasia (abnormal speech),
- executive function impairment (difficulty with planning, judgment, mental flexibility, abstraction, problem-solving, etc),
- agnosia (impaired recognition of people or objects), or
- apraxia (impaired performance of learned motor skills).
I have a similar problem with my husband. He was 58 when he received a diagnosis of frontal temporal dementia. When people look that up they find pick's disease, which isn't the complete disease. There are different types of FTD. I don't feel this is an accurate diagnosis for my husband. I believe he has dementia, but he does not fit the description of FTD. I tell people he was diagnosed with early onset dementia. People seem to understand that. I support the Alzheimer's Association so people assume he has Alzheimer's disease. It really doesn't matter what type he has. It's confusingReplyDelete
I don't know enough about FTD (or your husband, for that matter) to make a comment on proper diagnosis, but ultimately you're right on both counts: It's confusing and it doesn't really matter.Delete
A definitive diagnosis is important if you have the means and opportunity to participate in clinical trials or research, which are essential to solving these dreadful diseases. Even if a trial doesn't succeed, at least you will know that you did something to further our knowledge.Delete
Good luck trying to get a neurologist or primary care doc to actually code a diagnosis of Alzheimer's in your chart. I'm impaired enough that I can't renew my medical license, can't hold a simple job, or even do my volunteer work of mounting plant specimens at the local herbarium. All my med records document MCI, probable Alz type. Not good enough to collect disability, get med insurance to pay for more tests or even for certain meds. Yes, it is frustrating.ReplyDelete
That seems shocking to me and very unfair. I assume you've tried to get a second opinion? It sounds to me like it's Alzheimer's disease by any definition.Delete
Multiple neurologists. Are they afraid of being wrong? Is there pressure from insurance companies? Malpractice companies? Can't blame my PCP - he has records in hand from NEUROLOGISTS that list this vague diagnosis. Have another neuro appt scheduled - diff doc- but you have to wait months around here. December is my next appt.Delete
Rebecca, I'm not sure about what kind of disability benefits you are trying to get but it is possible to get benefits based on functioning level and not diagnosis. What needs to be documented is the things you have mentioned. Maybe an occupational therapist or rehabilitation specialist can help you do that.Delete
In my years of working in long term care and hospice, I would think that about 80% of residents have MCI. Getting an MRI or Catscan back from the doctor, it lists, "shrinkage of the brain consistent with aging." These people never decline into a dementia, they know their families, can take care of their ADLs with minimal assistance, have a decent short term memory. Most of these people would do quite well in assisted living, into their 80s or even 90s. They do not drive anymore, but get along very well with a facility bus, going to the store, writing out a check, etc. Their families care for their needs and expenses. I would almost believe that MCI is normal aging. even tho we'd like to think we could take care of ourselves, a lot of these people need help with meds, insulins, and some cares. I think there is a line that we must cross for it to become DX as AD.ReplyDelete
That's an interesting thought. Perhaps those cases of MCI that don't progress are due to "old age," perhaps at the more severe end of the old-age spectrum. Seems like an obvious idea, but I've never read it anywhere else.
Lee Ann - Your comments and examples from your work experiences always add informative ideas to the discussions. I'm glad you are participating.Delete
Dr. Hilfiker your post today was very helpful. I must admit I was very confused by earlier posts (including one guest post) about patients improving/ 'getting better' after their MCI or Alzheimers diagnosis. For some those discussions were unsettling to me, but I could not say why. I think maybe- there was some wishful thinking on my part.ReplyDelete
I am a nurse, retired to care for my husband who has early onset Alzheimers. We know this because when his sister passed away, her brain was donated for research, and a definite Alzheimer's diagnosis was reported to us. Both she and my husband have "Early Onset Alzheimers".
My husband was diagnosed with MCI by his Neurologist who, not surprisingly refused to call it Alzheimers. My husband and our adult kids held out hope it would not progress. Were convinced it would not. But I was not so sure.
Our family enjoyed a good two years with my husband at the MCI stage. He was able to join us in many activities he loved, read, take his beloved photos and hike. He shared his diagnosis with friends and relatives. These good people asked if we were sure of that diagnosis, and said he 'seemed fine'.
His transition to Alzheimers was tough for us, his immediate family. Worst was this brilliant man knowing he was slipping away from us and being able to express that to us. Many tears, but much joy too. He is now advanced significantly and has much difficulty finding words, doing any task what-so-ever, and going out. At this point he does not know my name, and thinks I'm a nurse assigned to take care of him. Actually some of that is true I guess.
I think it was wishful thinking on my part to read posts about test results and cognitive tests showing the patient improving. We really, really wanted that to happen with my husband. I'm so happy to read your post today. It was very helpful for me and brought me back to reality.
Thanks again. I love reading your thoughts.
Jenks, similar experience here with what seems an obvious (lacking autopsy/brain biopsy) diagnosis. What had to happen to finally get your husband his diagnosis?Delete
When we got the autopsy report of Alzheimer's for his sister. He had progressed beyond MCI as well.Delete
I'm glad the post was helpful. As far as I know, everyone who has MCI from the brain proteins that causes Alzheimer's and MCI will progress to Alzheimer's. With appropriate medication, their functioning may improve but the underlying brain pathology is relentlessly down. While it's uncertain, the people with MCI that stay stable probably have a different underlying diagnosis.Delete
family caregiver allianceReplyDelete
- TheCaregiverSpace.org is a free social network that allows caregivers to share their experiences, find critical resources, cope with stress and effectively combat the isolation and exhaustion of providing care for someone they love.
I have just tripped over your autobiography with Altzheimers. I am going to sit down and read this book from the beginning. You will be publishing this as a book? Right?ReplyDelete
You are an excellent writer with the passion of the patient and the compassion of the doctor combined in one venue.
I am proud of what you are writing. I will be thinking of you daily in my practice. Merit Carnahan RN, BS, HFEN
There is supposed to be a book, but not until late 2014. I appreciate your confidence.Delete
I can't believe how much of what you're saying is exactly what I've experienced. I , unlike you, was an abused child, so I pretty much knew where the depression came from. While not as bright intellectually as you, I am a retired English teacher, and I also defined myself by my intelligence. If I lose that, I will lose who I am.ReplyDelete
My biggest fear, however, is the fear that I will be mistreated by "caregivers" when I am helpless to stop it, as I was as a child. I fear that my children will not observe what is happening to me. I have a horror of that.
Like you, I, had a memory-gap episode. It was a year ago. I leave school each day at 2:00 pm. At 2:10 a student reminded me that it was time for me to leave. I looked at the clock and thought, "I don't leave at 2:10, but what time do I leave?" I left because it seemed that the others expected me to.
The next day I went to the doctor; when he had me draw the cube you describe, I couldn't. He then sent me for a PET scan. The clinical indication was “memory loss, dementia." "Impression: ...findings are concerning for early neurodegenerative disorder. Findings could correlate with early Alzheimer's disease.
One of the emotions I fought much of my early life was the feeling that I had virtually no real value, a common conclusion of abused children. My intellect and my education allowed me to move away from that feeling. It allowed me to make a contribution to society as an English teacher. I have been accepted and respected in my community. In about 1986 I was given a state award as an outstanding teacher. With Alzheimer’s, I will lose that identity. I wonder if I’ll go back to feelings of worthlessness.
Yesterday all day I could tell I had a bit of a mood change. I felt more irritable and more aggressive than I usually feel. It was as if I wanted to really fuss at someone, not for any reason other than I just wanted to be angry. Don’t get me wrong, I can get upset, but when I do, I almost always feel I have good reason. Yesterday I wasn’t looking for a reason; I just wanted to be angry.
In addition, I went to the pharmacy to fill a prescription and to get a couple of items. First, I forgot to give the prescription to the pharmacist. Later, when I remembered, we were near another pharmacy, so I decided to get it filled there. The clerk said she needed to see my insurance information. I had already taken out my doctor’s instructions and thought she might want that. When she said that wasn’t what she needed, I got my Medicare card out. She told me she didn’t need that either. I then knew she needed my medicine card, but I couldn’t find it. For some reason I had not put it in the place where I keep all my other credit cards. [When I thought about it, I remembered why. It was made of cardboard, and I was afraid it would get frayed with the others, so I put it someplace safe, but someplace where I had to look through everything to find it.] I finally found it.
She rang up the sale and told me it would be $49. I gave her 2 twenties and waited for the change. She said she needed another $9. It was only then that I realized what I had done. I gave her the other $9 and left. However, standing right behind me was the wife of the pharmacy owner. The pharmacist remembered that I had taught his kids in school, so we were conversing a bit. Now, both of them saw me make all those mistakes. It embarrassed me. I saw his wife give me a second rather quizzical look when I left.
I’m afraid I’ll keep doing things like that and get worse and worse. Sometimes it’s like my mind is covered with wax paper and I can’t quite get into it to really think the way I need to. It’s been almost a year since that first memory gap, and I’m afraid this is the beginning of the next step.
I can well understand that given your history, a fear of mistreatment by caregivers would be very powerful. I assuming from what you said, that you don't have a spouse, child, or anyone else who will do their best to protect you as you get more helpless. I wonder if it would help to visit some of the Alzheimer's facilities (now) to find out whether your fear of abandonment or mistreatment is well-founded. I have no personal experience, but a number of people have written that when the time comes, we will actually prefer to be living in a care home with others like us. That's pretty hard for me to imagine at this point. Perhaps I'm too Pollyannish, but it seems to me that we should be able to organize things so that we are not abandoned or abused.Delete
Yes, we will lose our identity. Unfortunately, as Buddha pointed out, trying to hang on to our identity, trying to hang on to our sense of self, trying to pretend that self is a constant that we shouldn't lose ... these are recipes for unhappiness and suffering. Letting go of self, of course, is easier said than done. But I think it's helpful to remember that losing self is not all bad. At least we don't need to be afraid of it. And it gives us a chance to be more gracious with ourselves.
You are a great writer with the passion of the patient and the compassion of the doctor combined in one venue. I am proud of what you are writing. This can really help those who suffers from this kind of diseas.ReplyDelete
Thanks you so much for sharing this. My grandmother has been forgetting so easily lately, I thought there was no way it couldn’t be Alzheimer’s. From your signs, I think it is. I hope we can get her some help soon.ReplyDelete
It's so hard to know for sure early on. It's always helpful to get checked out, I think, because there are other diseases with the same symptoms that can be treated. Since I wrote this post back in September, I've learned that about a quarter of patients who've been given the diagnosis of Alzheimer's actually have something else (maybe not better but different).Delete
Alzheimer's is a massive issue and more attention should be paid to funding and performing research toward prevention and resolution of the disease. Great post here - thank you for bringing attention to this matter.ReplyDelete