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!

Published by Miers Q.

This website is a testament to the importance of our healthcare system and the importance our choices have on that system. I have worked in the health information technology software space since hanging up my baseball cleats. Hopefully this information can offer some unique perspective in a notoriously ambiguous industry.

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