Alzheimer Studies

As I have blogged about before, I’m participating in a few studies about Alzheimer’s. This past two weeks have been somewhat intense because all of them had their periodic testing cycle at the same time. I’d like to give a little more information about them while they are so fresh in my mind.

All this cognitive testing within such a brief timespan has been pretty intense. So, keeping up with my regular routine (homeschooling our grandsons every day, church activities on Sunday and other days of the week, projects around the house, various medical appointments, chairing the annual meeting of a mission’s board I serve, etc.) has left me with little time to just sit with a clear mind. But I suppose that getting it all out of the way all at once is probably okay, even if mentally exhausting.

 

Background

I started getting involved in these studies a few years ago. My father had dementia for the last few years of his life and went downhill pretty quickly in the six months before he passed away. Because he was a Christian Scientist, he did not visit any doctors, so he was never officially diagnosed, but it was pretty obvious to all around him. His mother, my grandmother, had early onset dementia and passed away at age 68, having spent several years in various nursing homes. Alzheimer’s was not an official disease back then, but she died at the Connecticut State General Hospital for the Mentally Insane (not a label you could put on a medical facility these days). My family doctor retired at age 70 from his practice and very quickly started on his downhill trend. He was a member of our church and it was sad to see such a bright individual first being led around by his wife, then not being able to get out of the house much at all, before he passed away at 75.

It's because of these associations that I decided to get involved in some Alzheimer’s studies to help advance the medical field in diagnosis and eventual treatment of this disease. I have not only a family history, but a genetic disposition to getting it myself, although I’m cognitively not yet impacted – as best I can tell, or the testing reveals.

 

ABC Study

ABC stands for Aging Brain Cohort. I’ve been part of this study for a few years now. This study is looking at a large number of people over a long period of time to see how early the symptoms can be detected and the correlation between early detection and actual medical results (MRI/PET scans, blood work, etc.). I had an MRI earlier this year, but my annual cognitive testing just took place.

Two years ago, all the testing phases I’ll describe below took place in person at the University of Pennsylvania Penn Memory Center in one long half-day session. Because of the impact of COVID, they have rethought how to best get all this done. Last year everything was done virtually, but some of the testing was necessarily left out or shortened due to the limitations of not being able to meet in person. So, this year it was a combination event with the in-person testing kept to the minimum required.

Last week I participated in the first phase of the testing. This was a phone interview. The first half-hour they talked to my wife – who is my designated “study partner” for this study. She was in another room where I could not hear their questions or her responses. They were asking her about her evaluation of how I was doing (since someone who has Alzheimer’s may either be unaware of how they are doing or even in denial). They also asked her about some recent events in my life so that they could then see if I could remember them as well.

For the next half-hour they talked to me (and without my wife being there to prompt me). After some of the same evaluator questions, I was asked, “earlier this month, you participated in a significant event – it was on a Thursday – do you recall what it was?” That event was our monthly Senior Fellowship meeting, so I indicated as such. I was then asked things like, “what time did the event start?”, “what did you eat?”, “how many people were there?”, etc. I was also asked about another event that had just happened a few days before with a similar line of questions. Not looking for right/wrong answers, but testing my recall of recent events.

The second, and longest, phase was the in-person testing in Philadelphia on Monday. There were several parts to this. The first was a physical and physiological exam. So, besides a review of my medications, taking my blood pressure and pulse, the doctor has me do things like hold my head still, then look up at the ceiling, down at the floor, all the way to the right, all the way to the left. Then reach out and touch the tip of my finger to hers, then touch my nose, repeat with the other hand. Cross your arms and stand up from the chair without touching anything. Walk to the end of the hall (about 15 feet), then turn around and walk back. Simple tests that can reveal any issues with losing balance, having problems on one side that would affect my gait, etc.

The second part was the cognitive testing. The various tests in this are pretty standardized brain tests. Some are paper-and-pencil – like being given a sheet of paper with circled letters and numbers and having to draw a line (without lifting your pencil) in the order 1-A-2-B..all the way to 5-E (in the easier one) up to 12-J-13 (in the harder one). Some are mathematical such as count from 100 backwards by 7’s (100-93-86-79-72…). Some are mental such as give as many words that start with a particular letter in one minute. Some are memory – repeat a name and address they give you, then give it back again several minutes later (after you’ve taken several other tests in between).

The most challenging one is when they orally give you a number and ask you to repeat it back. They start with three-digit numbers (two of those), then two four-digit numbers, then two five-digit numbers. The test ends when you miss two in a row. Doing well is when you manage up through seven-digit numbers, but they go until ten-digit ones (I usually start missing around 8-9 digits). But then they ask you to repeat the digits in reverse order, e.g., if they say 5-2-7-8, you repeat back 8-7-2-5. For this one they start with two-digit numbers and a “good” score is if you can make it through 5-6 digit ones.

Finally, the third phase is a blood draw which they later test for the bio markers. The test is scheduled to take two hours, but since my responses were pretty quick on all the various tests, I was done in only a little over an hour.

 

APT Webstudy

The Alzheimer Prevention Trials (APT) Webstudy is designed to identify people who may have an increased risk for developing Alzheimer’s disease, using the latest technology to monitor their cognitive performance through regular online memory testing. I’ve been involved in this study for approaching two years. There are two parts to the APT.

The first part is a self-evaluation, called a Cognitive Function Index (CFI), which requires you to answer a bunch of questions in an online survey. It asks things like, how are you doing at remembering names compared to a year ago, as well as such things as what is your level of anxiety on a scale. Not a big deal. As you can see from my results below, I have consistently scored at level zero until getting a 0.5 last week. This was because I am detecting that I am more often having difficulty remembering names. Not a big deal at this point, but I am trying to be very self-aware.

[CFI results]

 

The second part, called a Cogstate Assessment, consists of four tests which involve showing you playing cards on the screen and asking you to respond to them as quickly as you can. The first part is “detection” and simply has a deck consisting of all red jokers and asks you to click “yes” as soon as the card flips. If you click too soon there is an audible “blat” indicating your mistake. The second, called “identification,” has both red and black jokers and asks you to click “yes” for a red one and “no” for a black one. Here, the “blat” means that you clicked the wrong key. The third part, called “one-card learning,” has all cards ace-king of all four suits and asks you to click “yes” if you’ve seen that card before and “no” if you haven’t. As they keep adding more cards, it gets increasingly difficult (“that’s a 10 of hearts, did I see it, or did I only see the 10 of diamonds?” Finally, the last part is called “one back” and asks you to click “yes” if the card is the same as the last one and “no” if it’s different.

As you can see from the results, my scores are pretty consistent over time and well within the range of “no significant change”.

[Cogstate results]

 

 

MTL Study

MTL stands for Medial-Temporal Lobe. The purpose of the MTL study is to better understand age-related changes in brain structure and function and to compare this with the earliest changes of Alzheimer’s disease. The MTL is part of the brain thought to be related to memory processes and is vulnerable to aging and Alzheimer’s. This is a three-year study and this year was my first session. In order to minimize my trips to Philadelphia, I had scheduled it back-to-back with the in-person phase of the ABC study.

The tests in this study are quite different that the ones from the other two studies as they are looking at the impact in other parts of the brain. There were several different tests. For example, one was that the coordinator would name a category, such as types of insects, or types of vegetables, or types of alcohol, and you would have to name five things that fit into that category while he kept track of how long it took to give your responses. The upper limit is one minute per category, and I responded generally within 6-7 seconds. Another test was where the coordinator would name two objects and ask you which had the more positive association. So, if the two objects were “banana” and “hurricane”, most people would answer “banana”. But there is no real right/wrong so things like “whiskey” have a negative association with me since I don’t drink, but for others it might be a positive association.

Some tests required you to use a laptop, for example they would show you a small thumbnail picture for three seconds and you would have to hit one key if you felt it was something associated with “outdoors” and another key if you felt it was something associated with “indoors.” So, roller blades would be outdoors, but a book would be indoors. I lost track of how many pictures there were – somewhere between 50 and 100. What they didn’t tell you was that you needed to be able to remember them. The next test was another group of 50-100 pictures and you had three seconds to indicate whether you had seen that picture before, whether you had not, or whether it was “similar” to what you had seen before. For “similar” there were things like the initial group of pictures had a black-and-white patterned dress, the in the second group there was another black-and-white dress but with a different pattern.

The MTL study was allocated 1.5 hours, but because of my speed on many of the tests, we were done in a little over an hour. But it was a pretty intense hour!

 

Conclusion

Between all the above, spread out over only a seven-day period, I was mentally pretty exhausted when they were all completed. It’s not that any one test was taxing, but that there were so many of them, and that they tested so many different aspects of one’s mental processing.

As I’ve noted, there are other non-mental aspects to these various studies – things like a brain MRI, PET scans, a Spinal Lumbar Puncture. But everything over the past week was mental, with the exception of the blood draw.

I’m glad to be past them. And I have nothing else scheduled until my next 3-month cycle of the APT Webstudy.

I hope that the above is illuminating to you. I don’t wish Alzheimer’s on anyone, and I hope that I do not fall victim to it either – although that’s a distinct possibility with all the risk factors that I have. But in the meantime, I hope that my participation in these studies will eventually help to either eliminate this disease by finding a cure for it, or at a minimum slow the progression of it.