Many of you reading this post know of Norman “Norms” McNamara. You’ve read his e-mails, his Facebook posts, his LinkedIn group discussion pieces, and you’ve probably even communicated with him personally. You know that he was diagnosed with early onset Alzheimer’s disease. He is a champion of Alzheimer’s, at least in the UK, and has done more in a year than you and I will ever do in a lifetime to bring awareness to people about Alzheimer’s and to educate society in how to better adapt itself to people with memory impairments. Norms is a social media whiz to boot, and seems to have found a whole second life in educating people about Alzheimer’s disease.

But Norms just found out that he doesn’t have Alzheimer’s.

This past week, Norms was rediagnosed with Lewy Body dementia.

So what happens when a person who has wholeheartedly embraced his diagnosis of Alzheimer’s disease and used that diagnosis to help hundreds of thousands, if not millions, of people with the disease and their caregivers, suddenly finds out he doesn’t have that disease?

First a word about Lewy Body disease. With apologies to the Lewy Body Dementia Association and other groups focused on this specific type of dementia, I’ll try and explain. LBD presents many of the same symptoms of Alzheimer’s, hence why it is often misdiagnosed. It is named after the person who discovered it, Fredrick Lewy, who, in 1912, while he was examining the brains of people who had had Parkinsons disease, discovered irregularities in the cells in the mid-brain region. These irregularities, microscopic protein deposits found in deteriorating nerve cells, became known as Lewy’s bodies (see http://www.lewybodyjournal.org/ and http://www.lbda.org/). Norms is not alone in that many people receive an early diagnosis of Alzheimer’s disease and then are rediagnosed with LBD when other symptoms present themselves. According to the Lewy Body Dementia Association:

Symptoms that differentiate it from Alzheimer’s include unpredictable levels of cognitive ability, attention or alertness, changes in walking or movement, visual hallucinations, a sleep disorder called REM sleep behavior disorder, in which people physically act out their dreams, and severe sensitivity to medications for hallucinations. In some cases, the sleep disorder can precede the dementia and other symptoms of LBD by decades.

Back to Norms. Obviously Norms has had the same question with regards to his awareness-raising activities: Now what? In the past few days, through his social media posts, he has been grappling publicly with this question, and at this point he seems to be somewhere between “so what” and “thank goodness I called it UK Dementia Awareness Day and not UK Alzheimer’s Awareness Day!”

I’ve been grappling with this too. Recently I edited a lovely and helpful little caregiver’s guide for caring for a loved one with dementia (Note: A moment of shameless self-promotion — freelance editing and writing is what I do for paying work). The author, a husband and care partner with his wife (who has Alzheimer’s disease) used the terms “dementia” and “Alzheimer’s disease” interchangeably. With my “editor” hat on, and knowing the confusion that exists regarding the use of the terms “Alzheimer’s disease” and “dementia,” I asked the author if his wife had actually been diagnosed with Alzheimer’s or if she had in fact received a more general diagnosis of dementia. First he said “Alzheimer’s” and then he said “dementia.” Clearly there was some confusion at that end as well. So I suggested that a few words of explanation regarding the difference between these terms might be in order. The author found an article by a Dr. Robert Stern of Boston University that explained the difference. Other than the first line of the article, which said that “dementia” was a term now used to replace “senility” in seniors (ARGH!!!), it wasn’t bad, and I summarized the best parts of the article and included it in the caregiver guide, along with proper references. (This article can be found at http://www.bu.edu/alzresearch/newsletter/documents/ADCBulletinSpring2010FINAL.pdf)

Basically the term “dementia” is used in two ways. First, it’s used as an umbrella term, under which are sheltered all the different types of diseases and illnesses that cause cognitive impairment. “Dementia” is the more all-encompassing term that has been adopted by just about every country except the USA to describe memory impairment. And then, as Dr. Stern’s article pointed out, “dementia” is also used to describe a group of symptoms that might be caused by any one of a number of diseases or illnesses (or, as the article emphasizes, treatable conditions such as vitamin deficiencies). What I appreciated about Dr. Stern’s article is that he described a list of symptoms of dementia, rather than listing symptoms of “Alzheimer’s disease.”

So, I had already been struggling with definitions when Norms got his news. I haven’t e-mailed or otherwise reached out to Norms. I guess this blog post is a sort of response. I’m sorry that he has to go through this sudden switch, not only personally but publicly. I hope he isn’t discounted by people or organizations who say “Well, if you haven’t got Alzheimer’s, you can’t speak for me/us.”

But Norms, I have to agree with you. Thank goodness you were progressive enough in your thinking to use the word “dementia” in UK Dementia Awareness Day. That’s the way it should be. Here is the simple truth. “We” (the global “we” that includes everyday people, people in organizations that represent the various types of dementia, medical professionals, researchers, pharmaceutical companies) — we just don’t know enough about the brain to start diagnosing people early on with a specific type of dementia. Why are we labeling it at all? Pardon my ignorance, but I don’t even think the treatment (such as it is) differs much during the early stages of memory loss, no matter what the doctor thinks the precise diagnosis is. In fact, many people are diagnosed with Alzheimer’s and given Aricept or whatever, when in fact they never had it in the first place. So it’s not like we are inadvertently hurting people more if we don’t stick a label on their disease right away.

Paradoxically I am all for memory screening and early diagnosis. But would it be sufficient to say to a patient and his or her family that they are in the early stages of memory loss (or dementia) and this is what they can do about it? Is it sufficient to say:

“We’ve ruled out treatable causes of dementia. You don’t have a vitamin deficiency. You aren’t dehydrated. You don’t have a urinary tract infection, nor do you have a thyroid problem or a brain tumor, and we have ruled out drug interactions. Look, I can’t see inside your brain so I can’t tell what is physically going on in there, and even if I could, I couldn’t be certain, because, let’s be frank: There are people who, post-mortem, have had autopsies and the ‘tangles’ in the brain associated with Alzheimer’s were found, except those people had no symptoms of Alzheimer’s while they were alive. So we really can’t be more certain until we’ve given this a few more years and we see where the symptoms take us. So I’m going to tell you that you have ‘dementia’. Here are your drug options, and, you should really get more exercise and eat better, especially because this could be vascular dementia, in which case we want to make sure you don’t have any additional strokes. You should also take up a new hobby, socialize a lot, and generally exercise your brain. You will face challenges in the future, such as giving up your driver’s license. You should also have an honest discussion with your family because no matter what is causing your dementia, at some point in the future — may it be along time — you will need additional care and you need to have your affairs in order while you can still have a say in what happens to you and what matters to you. In the meantime, do as I said — here’s a suggested diet and exercise program — and enjoy your life and your loved ones. Your community memory consultant will be contacting you soon with regards to local resources.”

OK, that last part is a bit of a dream, at least for us in North America. But what would be so wrong with the above scenario?

Well, what’s wrong with that is that there are organizations (no names mentioned) who have a stake in labeling as many people as possible with Alzheimer’s disease. But let me reiterate. We don’t know enough about how the brain works to start labeling people with a disease. Let’s all pull together and push for more research into understanding the brain. Let’s better understand how our brains are affected by other diseases that we might have, such as diabetes and heart disease. Let’s start to understand how our brains are affected by what we put into our bodies and by the environment. Let’s understand why some brains are affected by aging while others are affected when they are only in their 30s, 40s or 50s. We need to compound the progress made in the study of the role of genetics. Then once we understand how the brain works, we can start to understand the various diseases that undo cognitive function and how to address each one. In the meantime, we could avoid the anguish caused to patients and families by misdiagnosis. We need a Dementia Association or a Brain Society. We need Dementia Awareness Month. We don’t need more labels.