I recently volunteered to be a participant in the Intuition Brain Health Study that uses an Apple watch (provided to you for free) and iPhone (you must have an iPhone 8 or later model) to measure changes in thinking and memory as we age, both the normal issues of ageing as well as those that may be an early indicator of Alzheimer’s disease (AD) and other forms of dementia.

Currently there are 6.2 million people over 65 years old who suffer from AD.  This number is projected to increase to 13.8 million by 2060 unless an intervention is found that can reverse this trend. Unlike modern medical breakthroughs and recent improvements in outcomes of bodily diseases such as cardiovascular disease and cancer, very little has been done to improve brain health. Starting at around age 40, we all begin to slowly lose cognitive function, which makes it difficult to determine if this decline is “normal” or a sign of a more serious problem. What if there was a way to detect early warning signs 10 to 15 years before serious symptoms of AD or Mild Cognitive Impairment (MCI) begin to manifest? As with other health treatments, early detection is often the key to successful outcomes.

The Intuition Brain Health Study

I’ve been a reluctant user of Apple products for some time now – first with an iPod (the one with the clickwheel), then an iPad mini, iPhone 6 (my first iPhone; like I said, I was reluctant), iPad Air, another iPhone, Apple TV (mostly to watch Ted Lasso) and finally the MacBook laptop that I’m using to write this post. The last holdout has been the Apple Watch, which I didn’t think I needed because my digital Casio worked fine for telling time and waking me up in the morning. But that was before I read about the Intuition Brain Health Study.

Several things drew my attention to this study. It combined two things that I have a strong interest in: My life-long fascination with science and technology and my dedication to volunteering in retirement. I believe that this research is very important because, while we have learned a great deal about aging in the body, we know very little about brain health and diseases of the brain. On a personal level, I had an uncle who suffered from dementia and a mother who had mild cognitive impairment in the last years of her life, so I know how difficult it is to live with brain health issues and how hard it is for family members to care for them and watch them decline.

So despite some serious reservations about privacy issues and how the data was going to be used, I enrolled in the study last month because I felt that it was an important thing to do. According to clinicaltrials.gov, the study will consist of 23,000 participants and will last approximately two years. About once per month, I do an online thinking and memory activity that takes about 30 minutes. About once every three months, I do two short (approx. 3 minutes total) thinking and memory activities three times a day (morning, afternoon and evening) over a two week period. These are optional, but I earn points that can be redeemed for cash or donated to charity every time I participate. In addition, I answer a questionnaire about changes in my diet, exercise and sleep habits once every three months. Because this is a clinical trial, I won’t receive any individual feedback about my own brain health. I’ll just be one data point in a large pool of relevant information about brain health in general.

So what types of information will be mined from this study and how will it be used? Since I’m a participant rather than a researcher in this study, I can’t say for sure.  However, I did find some general information in the very prestigious and well-respected journal Nature about the use of mobile and wearable devices such as smart phones, smart watches and fitness trackers and their enormous potential to provide medical insights into disease detection and symptom assessment. As a side note, this post is only about my own personal experience in this study and should not be construed as medical advice in any way. Please see your physician if you are experiencing any symptoms of cognitive impairment or memory loss.

It is truly incredible how much technology is housed inside a smart phone or watch, and how quickly this technology has evolved. I remember getting my first cell phone with a built-in camera less than twenty years ago and being amazed that I could take a photo and send it to someone else wirelessly (as long as the other person also had a smart phone and the right data plan). Today’s smart phones are light-years ahead of those early devices and are capable of so much more. Here’s a list from the Nature article with some of the capabilities of today’s devices and how they can be used in the Intuition Brain Health Study to monitor brain health:

Cameras

Cameras can be used to monitor eye movements and pupil reflexes. While we normally focus longer on an image that is new to us than one that we have seen before, studies have shown that pre- Alzheimer’s subjects do not. In one of the tests that I perform, I look at a set of images that correspond with a number value and have to trace the image with my finger on my iPhone (see the figure below). Sometimes the images repeat themselves, so theoretically I should spend a few milliseconds less time on those images.

A similar test measures memory by briefly showing a set of randomly repeating images, one at a time. I need to tap on the image that appeared two images ago. I’m finding this to be particularly challenging. But besides testing memory, my pupillary reflex may also be possibly monitored because the screen flashes either green or red depending on if I give the correct response or not. It has been shown that the pupils of AD patients dilate and constrict more slowly than normal in response to changes in light intensity.

Touch Sensors

Fine Motor Control

The tracing test can also measure fine motor control via sensors on the phone screen that monitor the accuracy and speed of my finger movements. Sensors can also monitor typing speed and accuracy as well as the number of pauses while typing. Since typing, scrolling and swiping are the main means of interaction on a smart phone or tablet, they can provide invaluable information about the user’s fine motor skills, which tend to decline in the early stages of MCI and dementia.

Gross Motor Function

One of the most popular features of the Apple Watch and the iPhone is the step counter.  But the built-in accelerometer can yield so much more information that can be used to predict future brain health than just simply counting steps. At first glance, it doesn’t seem like there is much correlation between how we walk and cognitive impairment. A study by Buracchio, et al., however, found that gait speed (how fast we walk) decline can predict MCI twelve years sooner that a clinical diagnosis. Along with other measurements such as gait symmetry, stride length and gait speed variability, these metrics can be combined to produce a composite score that can be used to predict the likelihood of developing MCI or AD.

GPS

Another popular feature of smart devices is the Global Positioning System (GPS), which is used when driving to get directions and navigate travel routes. While drivers in early stages of dementia are capable of driving safely, there are often changes in driving habits as their illness progresses. Patterns such as driving at a reduced speed (at least 10 mph slower than the normal flow of traffic), reduced overall miles driven, and staying closer to home are common in early stage dementia. Getting lost more easily also becomes more common, which results in unusual or inconsistent routes to often familiar places. All of these behaviors can be easily tracked and recorded by the GPS built into most mobile devices, long before a diagnosis can be made by a clinician.

Microphone

Later on in this study, participants can volunteer to be interviewed via an online teleconference call. Speech patterns such as the number and duration of pauses when speaking can be measured and analyzed. I, like most older adults, have occasional “senior moments” when I can’t immediately recall a name or find the right word. Collecting data on this subject will shed light on whether this is a normal phenomenon or a sign of a deeper problem.

Heart Monitors

Heart rate variability (HRV) is of particular interest to brain health researchers. The brain normally controls the rate that your heart beats depending on what you are doing at the time – slower when you are resting or relaxed and faster when you are exercising or stressed. But in AD and MCI patients, the brain does not react to the changes in conditions and the heart rate continues to beat at the same pace. Measuring the reduction in HRV can be an early and important marker that signals cognitive impairment well before other symptoms appear.

Sleep Monitors

The Apple Watch and other wrist-worn devices have been found to be not very reliable at determining sleep stages such as deep wave sleep or REM, but sleep – waking cycles can be monitored and are an important metric to measure when studying cognitive decline. According to Nature, “Biological changes to the parts of the brain that control sleep function are among the earliest areas affected in AD before cognitive decline.” Disruptions in Circadian rhythm patterns such as Sundowner Syndrome and poor sleep quality are common features of AD. There is also a bi-directional relationship between them that makes things more insidious: Poor sleep quality increases the risk of developing AD while developing AD contributes to poor sleep quality, which increases the severity of AD…etc. So it is crucial to identify poor sleep quality before this cycle begins its downward spiral.

Device Usage Logs

Social withdrawal is commonly seen as an early sign of MCI and AD. Other symptoms include mood disruption, agitation, apathy and depression. These changes manifest in ways such as decreased size of social networks, less social contact and less time spent outside of the home. Smart devices can track these changes by logging the time spent talking on phones, the number of text messages sent and received, and interactions on social media, while GPS can monitor time spent outside of the home and locations where social interactions occur. And just like sleep disruptions, it is critical to monitor social withdrawal as soon as possible because it is also bi-directional. According to the Alzheimer’s Society, social activity is one way to reduce the risk of AD.  Conversely, social withdrawal increases the risk of AD, which leads to more withdrawal, which further increases the severity of AD…etc.

Discussion

As stated earlier, medical research has led to great advances in the treatment of cardiovascular disease and cancer, but very little has been done to improve brain health. In fact, until there are significant breakthroughs in treating diseases of the brain such as AD and MCI, more people will suffer from them because the risks increase the longer we live, and our average lifespans are increasing. We are literally outliving our brains. That is why I believe that this study is so important and why I decided to participate despite some significant reservations.

I (and, I’m sure you as well) have serious concerns about the ethical and legal implications of this study. Data privacy and confidentiality are also concerns. I can envision, in a worst case scenario, health insurance providers denying coverage based on some of the data collected. But, although there will be many who will disagree, I believe that the benefits of detecting brain health issues as early as possible outweigh the risks. In my next post I will be discussing the latest research into improving brain health and, like most health matters, prevention and early detection have been shown to be the best ways to ensure a positive outcome. If the data collected from this study helps in any way to prevent or successfully treat diseases of the brain, then I am willing to give up a little bit of privacy and control of my personal data.

If you agree and are interested in participating in the Intuition Brain Health Study, as of the publication of this post (April 2022), they are still accepting applicants between 60 and 86 years old.