New Guidelines for Alzheimer's

It was reported yesterday that there are new guidelines for Alzheimer's disease. The first article I read was in the New York Times, and I wrote about the guidelines on Katten & Benson's blog.


The most important part of the story, however, is lost in a short paragraph in the middle of the story. It was reported that Congress has introduced a bill that will create specific cost codes for Alzheimer's disease for Medicare. These codes would allow doctors to be paid for having discussions with family members and caregivers. This is significant, because as the article states, "keeping family members well-informed can result in better planning and care."


It is amazing to me that it has taken this long for this to be recognized. In the social work class I teach, we talked last week about setting goals. Professionals are really good at setting goals--our goals. We often forget that we need to be setting goals that are consistent with what our client/patient wants. This becomes difficult with that person with dementia, especially when they want to stay at home alone, when clearly that is no longer an option. I told my students that when working with dementia clients, the "client" at some point changes from the person with dementia, to the family/caregiver. At that point, we must then revise the goals. We still must address the person with dementia's goals, but the family/caregiver's goals often become primary.


I think allowing doctors to have these discussions with the family are a step in the right direction.

When Mom or Dad Doesn't Know You Anymore

One of the hardest things about dementia is when Mom or Dad doesn't know you anymore. It doesn't matter that you've read The 36-Hour Day, or go to the local Alzheimer's symposium every year; it's just hard.

My Dad didn't have Alzheimer's, but at the end of his life, in the advanced stages of pancreatic cancer, he did not recognize me the last time I saw him alive. There is just no way to prepare for the first time that happens.

I just found a brand-new blog, My Father Doesn't Know Me Anymore, that addresses the many complex feelings that come with caring for a loved one with dementia. Finding the blog was accidental--I was looking at Katten & Benson's website statistics on Wordpress, and saw that we had been linked to on this blog. I followed the link out of curiosity, not sure what I'd find.

It turns out that the author is a client's daughter. I have worked with her and her father for about three years. As Lucy says in the blog, we have been through some ups and downs, but what relationship, even a professional one, doesn't have ups and downs? Lucy says some nice things about me and Steve Katten, the attorney I work for, but what I appreciate most about Lucy's blog is her honesty. She tells you what it is like to be a caregiver--the good, the bad, the ugly and the beautiful.

Lucy and her sister are some of the fiercest advocates for a parent I have ever met, and they are truly inspiring. I plan to read Lucy's blog on a regular basis, and I hope you do, too.

New on the Alzheimer's Front

According to a story in the New York Times, the FDA is getting closer to approving a scan that will help diagnose Alzheimer's disease. Right now, we can't definitively diagnose Alzheimer's disease until death, when an autopsy can be done. What a lot of people don't realize is that not only are there many types of dementia, but other treatable medical conditions mimic Alzheimer's.

Other types of dementia are related to vascular problems, such as having several small strokes, or Parkinson's disease. In these cases it might be possible to better treat the cause, especially with vascular dementia, to slow or stop the decline. Depression, which is very treatable, can also mimic the memory loss of Alzheimer's. Delirium is another condition that can look like Alzheimer's. Delirium is frequently caused by an infection, and infections are often successfully treated.

This is good news, because it gives doctors the potential to definitively rule Alzheimer's in or out, allowing them to properly focus their treatment. The article says full approval is still several months away, but it's certainly a great stride forward.

More on Predicting Alzheimer's

Here is a followup story to my last post: Spinal Fluid Test is Found to Predict Alzheimer's.

The good thing is that the research is moving quickly on Alzheimer's disease. The number one predictor for developing Alzheimer's is age, with over 20% of women over age 85 developing the disease (2010 Alzheimer's Disease Facts and Figures). And face it, age is not a risk factor we can control. We can eat right, exercise, and do all the crossword puzzles imaginable, but if we're lucky, we'll all age.

I still have qualms, though, about doing spinal taps on people. The article indicates that it isn't as risky a procedure as it once was, but then it goes on to say that most internists and family doctors aren't experienced with the procedure. It was suggested in the article that spinal tap centers could be established, but you know, I have mixed feelings about that. It's just one more silo in an already too fragmented health care delivery system.

The other, probably bigger issue for me is one of ethics. Again, who decides? One doctor in the article suggested it should be a decision made between a doctor and the patient. But can my health plan force or strongly encourage me to have the test? If I want the test, will my insurance company pay for it? If I test positive, will I lose my coverage? Will my provider then pay for early treatment?

If I decide to have the test today, what other kind of ramifications will it have for me? I just purchased long term care insurance, but I'll bet I would have been denied if I had tested positive. Will future employers not hire me?

I think the research is good, but at this point I think that's where it needs to stay--in the realm of controlled research. That's not to say I won't change my mind in the future, I probably will. But I don't want us rushing in to something without really thinking through the long term ramifications for every day people, and making sure that new technology and procedures don't make an already terrible diagnosis even more terrible.

Preclinical Alzheimer's ?

An article in the New York Times today reports that medical experts are recommending new guidelines to diagnose Alzheimer's dementia earlier. We're pretty sure the disease starts 10-20 years before people become symptomatic, in fact I was at a seminar yesterday and heard that very statement. But I view this news with trepidation.

The experts propose using MRI scans (expensive), PET scans (even more expensive), and biomarker testing (not even that common, and certainly expensive) to determine if a person "preclinical Alzheimer's". Some of the reasons given for diagnosing earlier is so that the disease can be treated. Except that there aren't any drugs on the market yet that will do that. Aricept and Namenda can only do so much, and as far as I can tell, they might not be effective in this particular instance.

Another reason given is that it will give people the chance to make plans and get their affairs in order. Except most don't do that now. It's rare that we have someone come in and say they've just been diagnosed and they want to do or review their estate planning and talk about when they might need a guardian. Of course I want people to do that, but I don't think many people in their 50's will do that if that faced with a diagnosis of "preclinical Alzheimer's".

I invite you to share your thoughts about this news. Me, I'm going to be chewing on it a while.