Navigating the existential impacts of dementia, Part 2:

In 9 out of 10 cases of Alzheimer’s disease, there is no inheritance or familial component. To be sure, the compounding incidence of this manifestation is too damning for Generation X, my millennial’s, Generation Z, and those that will proceed us not to pay attention. While the jury is still out on the multitude of factors that cause age-related dementia, our ability to leverage the data at our disposal today offers a tremendous advantage over previous generations in understanding the incidence and impact on our population. In Part 1 of this series, we discussed the impact of Alzheimer’s on a patient and caregivers quality of life. So, what are the brightest people studying this disease saying are the foundations of longevity against Alzheimer’s?

The following 4 recommendations plus a topic for research (nutrition) seem to be unifying rallying cries with those “in the know” that we can immediately implement at little to no cost.

[Education] [Sleep] [Exercise] [Biomarkers] [Nutrition (No FDA clearance here)]

The most critical component of managing Alzheimer’s is education. The pathology of Alzheimer’s disease (AD) is characterized by cerebral atrophy in frontal, temporal, and parietal regions. Nobody chooses their parents or environment. However, the amount of information that is at our finger tips in the United States allows for unlimited opportunities to build cognitive reserve. This concept indicates that higher educational attainment throughout life creates resiliency against the bio-chemical effects of Alzheimer’s on the brain. Once the disease takes hold, we start to see a much sharper cognitive decline: people with high cognitive reserve are more resistant to the effects of the amyloid beta burden. Think of cognitive reserve as credits in a bank that compound over a lifetime.

As we evaluate looking for social solutions to this problem, a recommendation is Snakes and Latte’s (disclosure, there are only 4 cafes in North America and I would be a benefactor of your patronage). That said, creating community through board games is a great catalyst for building cognitive reserve and the concept of logotherapy that Victor Frankl describes in, “A Man’s Search for Meaning”. Community and challenging the mind are natural catalyst’s for fulfilment and cognitive reserve, two main drivers for healthspan.

On the topic of sleep. Matthew Walker just released “Why We Sleep” and his latest research on the importance of getting enough sleep cannot be overstated. The cliff notes version of this podcast episode sum up why re-evaluating our priorities when it comes to sleep is a safe bet. That episode is the first in a three-part series where episode two further describes why we should make our loved one’s sleep (especially children for those that have them) just as much of a priority. Also, check out this video to offer some real-world perspective on what sleep deprivation does to our brain:

When we compromise circulation to the brain, we are always going to get a neurological deficit. The only thing we can do right now if we have amyloid beta in our brain to reduce it, or slow the accumulation, is exercise on a regular basis. To that end, if sleep is critical for resetting our internal network, exercise helps to catalyze the bio-chemical processes that sleep kicks-off in order to reset our brain. Further, regular exercise of our vascular system is thought to have significant down-stream effects on blood flow and inflammation within our neurocircuitry.

The aforementioned advent of technology has given us the ability to analyze data across populations going back generations. In a previous post, we discussed how the United States of America was propelled towards digital health records circa 2009. The combination of the HITECH Act and Moore’s Law is helping individual consumers to capture their personal biomarkers for monitoring. The following are the tell-tale biomarkers that have been identified as the keys to monitoring and understanding where we are on the longevity spectrum for Alzheimer’s:

[Blood Pressure] [Pulse] [Weight] [Lipoprotein] [Blood Sugar] [Body Fat] [Muscle Mass]

Understanding and maintaining the recommended ranges of each biomarker is for another conversation. It’s pretty clear though that getting lipoproteins, diabetes, and blood pressure under control is critical to the success of staving off chronic and age-related diseases.

Individual consumers becoming responsible for creating cognitive resiliency is fundamental to reducing the personal and financial costs of Alzheimer’s. Accountability, baby! This is a microcosm of the goals that Health Savings Accounts (HSAs) and Accountable Care Organizations (ACOs) are jockeying for in reducing over consumption and increasing quality output within the United States healthcare system. I will spare the soap-box around why there should be some sort of Nudge into HSAs. I will concede given the stance on opt-in and opt-out at this point, it’s a touchy subject.

For my money, building cognitive reserve density today is what will create impact for our current generations. So, pick up a book or a Sudoku puzzle the next time binge watching reruns of Breaking Bad is on tap. This will create credits in our brain bank with some runway for compound interest to do its thing. Something to leave everyone with, apologies in the advance for the candor, Robin Williams choose not to put his family through managing Lewy Body dementia. The second most common form of dementia behind Alzheimer’s.

Is there is any doubt why he chose that route after reading this article?

Never stop learning!

The obligatory disclaimer: I am so far from being a doctor it’s silly. This post is a compilation of recommendations from some pretty-forward thinking individuals and it does steer away from any nutritional advice altogether.

Navigating the existential impacts of dementia, Part 1:

“Up to 47 million Americans have preclinical Alzheimer’s Dementia (AD), meaning they have AD in the brain, but no symptoms.” Assuming that roughly 1 in 6 Americans have preclinical AD, how does one navigate all the systems and processes available if you are faced with the prospect of sustaining a loved one’s activities of daily living (ADL) as they progress with Alzheimer’s?

You will be hard-pressed to find a greater scourge on our healthspan, short of cancer, than the many forms of dementia. Like cancer, we know so little about it and it is virtually unabated on the body after a certain point. Our lack of understanding of the disease on a biological level has made care and awareness daunting. Understanding not only the physical and mental deterioration to be expected but also how to manage the systems in place to support caring for individuals with this disease is critical. A quick house-keeping note, while dementia is the umbrella term, Alzheimer’s and dementia are used inter-changeably in this post. Alzheimer’s related dementia accounts for an estimated 60-80 percent of dementia cases.

First, let’s at least acknowledge some of the fore-most clinical thinkers on the topic of this disease. This is in case you, like me, don’t want to stop at the surface of its evolution. This guy and the network of individuals he has surrounded himself with are about as current state as it gets. More importantly, he is sharing his network (some quick examples: here, here, here, and here) and knowledge at virtually no cost (you can donate $120 a year to get access to all of his content) all thanks to this concept: Aggregation Theory. Like many others, dementia is an age-related disease.

The impact of this disease on our healthcare system is tremendous. Total healthcare payments to cover all patients with dementias are estimated at $277 Billion for 2018. That’s roughly 8% of U.S. healthcare spending annually and The Centers for Medicare and Medicaid will be covering $186 Billion of that. Medicaid spends roughly $8,400 per beneficiary with Alzheimer’s vs. $360 per beneficiary without Alzheimer’s on an annual basis. About 25% of people with dementia are on Medicaid. The average annual out-of-pocket expenses for someone over 65 with dementia is a little over $10,000 per year. Needless to say, the realities of Alzheimer’s impact become clearer with the data at our disposal today.

As mentioned above, entitlement programs (namely Medicaid) and the patient’s/caregivers really bear the burden of this disease. Estimates indicate over 18 billion hours (that’s billion with a B) of uncompensated care were provided to dementia patients in 2017. One big driver of this uncompensated care, 95% of people with dementia’s are on Medicare but Medicare does not cover long-term care in a nursing/assisted living facility. To summarize, it is estimated that 10% of the 10,000 baby boomers turning 65 will develop some form of dementia, that’s 1,000 of those folks retiring every single day will develop dementia before they pass. 75% of those people are going to end up in an assisted living facility if they live past 80. So, with a little preparation, making the transition into that reality can be made much easier.

The following is a quick check-list of items that should be a part of the legal planning portion of your healthcare journey:

Advanced Healthcare Directives:

  • A Living Will: this outlines the types of care that you do or more importantly, do not want along the continuum of care received.
  • Durable Power of Attorney: this document outlines the person responsible for carrying out your Living Will in the event you are not functionally able to.
  • Do Not Resuscitate Form: this form instructs healthcare professionals not to perform CPR in the case of no pulse or breathing.

A measure that some have taken is getting the Living Will and Durable Power of Attorney documentation in place over 60-months prior to needing assisted living. From there, some caregivers are able to insulate their loved one’s estate from being depleted by paying for long-term care. For good measure, Medicaid eligibility indicates there are either very specific asset classes left or more frequently, there is not much left in your loved one’s estate on the whole. Side note, I get it, you can have a field day with the social and ethical implications here. Another avenue to pursue would be long-term care insurance. Note that pre-existing conditions preclude an individual from being eligible for long-term care insurance. Given that 70% of those over 65 will use some form of long-term care, evaluating for family history, lifestyle and social determinants of health (while not sexy) might be a consideration as our peak mental capacities approach.

Ultimately, long-term care is at the heart of being able to successfully manage neurodegeneration. Given the numbers of our population heading into 65 and the societal impacts of all dementia, the current conversation needs to be shifted towards awareness, prevention, and preparedness for managing the new-normal this disease creates.

Hopefully at this point you are asking questions like:

  • What can those with loved ones who are showing signs of mild-cognitive impairment (MCI) do to create more cognitive reserve and plan for tomorrow? (Who doesn’t think about this?)
  • What is driving the proliferation of this disease?

In Part II of this series, we will start to explore early detection and prevention research on Alzheimer’s specifically given it’s incidence within the dementia family.

For now, be a Linchpin and never stop learning!

Quality, With a Dash of Affordability

Healthcare is unlike any other business model that exists which is why it is difficult to manage and evaluate for innovation. To be sure, technology and “the man” are innovating but, it’s happening in a framework that is difficult to modify in short periods of time (generations). Regardless, the Medical Loss Ratio should not abdicate health insurance companies from providing quality and pricing transparency that patients can expect within their defined plans. This article will synthesize some of the tools you can work with as a consumer when you are evaluating the potential cost and quality of your healthcare providers. There are several organizations mentioned here that you can spend a great deal of time researching. For now, highlighting how these organizations provide some level of transparency into the black box of healthcare cost and quality is the focus.

The Leapfrog Group is a nonprofit watchdog that provides transparency around the quality outcomes patients can expect from healthcare systems. If a healthcare consumer has choices for their local or regional care, The Leapfrog Group provides a hospital compare tool that runs qualitative searches across a number of different metrics that Leapfrog Group captures in their annual survey’s. There are 10 sections spanning 28 specific measures that make-up these surveys. There are two main tenants that these surveys focus on:

  • Outcomes (readmission rates, infection rates, etc.)
  • Structural and process related measures (efforts towards creating safer care)

In 2018 there were more than 2,600 hundred hospitals that participated in this survey. Excluded from these surveys are DoD/VA hospitals, critical access hospitals, specialty hospitals, children’s hospitals, outpatient surgery centers, etc. The VA has their own quality reporting structure through the Strategic Analytics for Improvement and Learning (SAIL) Metrics and that is probably a topic for another conversation in the future. Leapfrog is a great resource for anyone looking to take a Consumer Reports type approach to their potential healthcare provider they are evaluating for their care.

Medicare.Gov is a site run by the Centers for Medicare and Medicaid (CMS) that houses everything you would ever want to know about CMS’ role within our healthcare system. Within CMS, the National Health Safety Network (NHSN) is a lesser known entity that requires hospitals to provide their Medicare infection data on annual basis. 1% of an eligible healthcare organizations Medicare reimbursement is dependent upon meeting a certain criteria of safety through the Hospital-Acquired Condition (HAC) Reduction Program. CMS reduces the reimbursement of a healthcare systems payments by 1% if they are in the bottom 25% of hospital acquired infection rates for Medicare patients. The NHSN provides the infection data they capture through a Hospital Compare Tool that healthcare consumers can use to evaluate their prospective healthcare providers outcomes data. While it’s not perfect, for my Atlanta natives try comparing the patient populations of a Grady Hospital to a WellStar Kennestone, it does provide some perspective on what sort of harm your prospective healthcare provider has caused previously. The data tends to show outcomes on a 15-month +/- trailing basis and is a good lagging indicator of quality.

The Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) score is another lagging indicator type survey that provides consumers with content around the experience other patients had while in a particular facility. CMS developed this tool in conjunction with several other quality focused organizations to help set expectations with patients from the perspective of patient’s around the quality of the experience they can expect within a certain healthcare system. These surveys also drive reimbursement metrics through the Patient Experience of Care portion of the Value-Based Purchasing Program. There are 27 questions that patients fill-out after they are discharged to rate their experience within a particular facility. 10 Measures are currently reported at Medicare.Gov for this survey. A given healthcare system has to capture at least 300 surveys per reporting period in order to be considered compliant across the required reporting measures.

Clear Health Costs is a journalism-based organization from New York City that is creating true pricing transparency within states that tend to have more patient-friendly billing practices, for now. Here is a Ted Talk that CEO Jeanne Pinder gave on the topic and her role in developing the organization. Currently their reach is limited to select markets but it feels like they will continue to expand their reach, patients (a.k.a., people as Jeanne mentions) and providers alike are becoming more willing to share their experiences. This website relies on data and there is no better way to price out your potential healthcare expenses than through actual patient data. While exposing charge masters is a sign of the consumerization of healthcare, does anyone really pay MSRP of a car they are about to purchase? More importantly, given the complexities of providing care for populations, procedure and service-related expenses become even more fragmented when insurance is introduced. It’s important to know what your options are both with cash, hello health-savings accounts, and through your insurance plan.

The reality is at some point we all need to take advantage of our healthcare system for better or worse. Our healthcare system is Father time is after-all, undefeated! Why not act and prepare accordingly?

Digitizing American Healthcare

The American Recovery and Reinvestment Act (ARRA) of 2009 was intended to be a boon to the economy on the heels of a tumultuous 2008. The Health Information Technology for Economic and Clinical Health Act (HITECH) is a lesser-known stimulus program within ARRA that propelled the United States of America towards the digitization of personal health records. The benefits of having a digital instance of a patient’s longitudinal history are immeasurable for our healthcare system and everyone involved.

Gone are the days of pharmacists trying to interpret the right compound, dosage, and administration for all patient prescriptions because of some shoddy hand-writing and a fax machine that won’t dial. Lab results can be immediately analyzed and communicated to a patient’s care team to effectively begin treatment regimens or quell any fears that what happened in Vegas did in fact, not stay in Vegas!

Everyone stands to benefit, the patient can take their records with them where ever they go, providers can interpret the patient’s history from a common medical history framework, and the insurance companies don’t have to hire an army to sift through paper charts to make good on their coverage requirements.

The HITECH Act provided individual providers and hospitals monetary incentives to adopt an Electronic Health Record (EHR) system. Doing so is not a cheap endeavor. The HITECH Act also mandated a certain level of documentation needs to be captured on every patient that a provider sees. The proverbial string attached. This program was called, Meaningful Use (MU). At one point, there were more “MU Certified” software products in the marketplace than there were countries in the world.

Now, picture trying to start your Tesla with a Ford F-150 key FOB and that is what has become the process of communicating patient health records across the continuum of care. Odds are also pretty good that the surgeon performing your ACL surgery does not care whether you are a smoker but he’s now required to document that, a la MU.

Healthcare had to be pushed into the digital age and there was no good way to do it in a free market system. The policies created as part of the HITECH Act were created for the long-term benefits of the American people and presumably the healthcare system. Unfortunately, Meaningful Use is now known within the healthcare provider space as, Meaningful Abuse. Lack of interoperability and workflows that are irrelevant to specialists on the front lines created mismatched agendas. As such, MU has evolved to Promoting Interoperability to try and change the narrative around a system that was constructed with the data scientist in mind.

Is it any wonder healthcare is on its way to 20% of GDP?

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