Putting a dent in the dearth of dementia care

Let’s talk about dementia. As I ready myself to press the “submit” button on our application to the CMS GUIDE Model this week, I figured it was a good time to existentially reflect on why I’m here (at Rippl). For the policy wonks out there, dementia is both highly prevalent (>6 million people with dementia in the US today) and tremendously expensive (average annual cost of medical care over 30k) [1]. Given the sharp increase in prevalence as Baby Boomers like my parents ripen to the age of 85+ and that half of all Medicare beneficiaries have dementia by the end of life [2], this could become a trillion dollar disease for a long time. So if you care about numbers, you should care about dementia.

For non-actuarially inclined humans, we know the ravages of the disease firsthand through family experiences that are - without diminishing the seriousness of other common conditions - deeply personal. It attacks our memories, our relationships, our personalities. Yet our healthcare system isn't ready to provide the dementia care we need. We simply don’t have the trained workforce available to meet the demand of today, let alone the doubling of demand in the coming decades. The sad purity of this situation is that we are so far behind in delivering needed care that the opportunity of improved health outcomes, quality of life, and total cost of care far outweigh that of various coding gimmickry and other low-value preoccupations of our industry. Our seniors just deserve better. And, frankly, we’re done waiting.

Let’s start with access

I just spoke with a former colleague and primary caregiver for her mother, who is living with dementia. Their upcoming neurology appointment? It was a 7 month wait and over 40 miles away. All the days before and after? No support, no guidance. This situation is, depressingly, the status quo. When access is this hard, the reality is that the vast majority of seniors and their families are left to navigate these complex conditions themselves, leading to a domino effect of caregiver strain, personal and professional sacrifice, familial discord, and - wearing my health policy hat - unnecessary and misaligned utilization that does not contribute to living well.

Challenge #1 - delay of care

Access to dementia care of any kind is abysmal. A seemingly good stat: almost all cases of dementia are referred to a specialist and ultimately diagnosed [3]. Great, right? It just tends to be a case of too little too late - most of those diagnoses are made when people have already progressed to a moderate or severe stage of the disease [4]. 92% of mild cognitive impairment cases (precursor to dementia) goes undiagnosed. Wait times to see a neurologist are incredibly long – often 6 - 12 months depending on where you live. In the case of my family, and millions of others, it all adds up to years of aimless conflict, confusion, and frustrating decline in health. Nine months is a lifetime when you have dementia and lose a little bit of yourself every day.?

This is not for a lack of desire or effort on PCPs’ or neurologists’ parts [5]. Speaking with PCPs, there is little more frustrating to them than spending the time identifying an issue then not being able to offer your patient and their family a meaningful solution in a reasonable amount of time. The long-term, trusted care relationship folks need isn’t rocket science - it just doesn’t exist where and when most people need it.

Challenge #2 - geographical limitations

The Alzheimer’s Association report alarmingly points out 20 entire US states are "dementia neurology deserts” [6]. In fact, rural areas in every single state are their own care deserts. Almost one in five Medicare beneficiaries travel 50 or more miles one way to see a neurologist in a way that materially affects follow-up and ongoing care [7]. The beauty here is that the majority of support doesn’t need to be in person. One of the country’s leading dementia programs (UCSF’s Care Ecosystem) has shown that a telephonic program can produce exciting positive results and bring high-quality care to those who otherwise struggle to access it. Just because you live in a rural area doesn’t mean you need to be last in line for top-class service.

Challenge #3 - standard “episodic” care cycles

People living with dementia in the US spend more time in the ED than with their primary care doctor. This is especially true for those who visit the ED once, which is an indicator of many more such trips [8] - no next-gen AI predictive models required. This is both unacceptable and highly avoidable. I will go out on a limb and say that the best dementia care is not found in the ED.?

Research shows that a collaborative care model with regular support reduces stressful ER visits and unnecessary hospitalizations [9, 10]. Instead of the typical high-intensity episodic care our healthcare system is so good at doling out, people living with dementia and their caregivers deserve a dementia-trained care team to provide ongoing, regular support. Along with their periodic primary care visits, they need proactive personalized care plans, therapy for both patient and caregiver, medication management, supporting accessing community resources, care navigation and 24/7 real-time crisis level support.

Readying ourselves for GUIDE, I certainly have a few bones to pick with model mechanics as a former payment model designer (another blog for another day). However, the model is largely what the country needs. We know enough from the evidence about what works to take this care model out of obscurity and allow it to spread. To improve the lives of millions, we need dementia care on demand. This is why Rippl exists and why I’m here.

Sources:

(1) Analysis of Medicare FFS claims data derived from the 2019 CMS Limited Data Set (5% sample), which includes Original Medicare eligibility and claims data for over 3 million unique members across the US.

(2)https://jamanetwork.com/journals/jama-health-forum/fullarticle/2790757

(3) https://www.alz.org/media/Documents/alzheimers-facts-and-figures-special-report.pdf

(4) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10362635/

(5) https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2809953

(6) https://www.alz.org/media/Documents/alzheimers-facts-and-figures-special-report.pdf

(7) https://www.neurology.org/doi/10.1212/WNL.0000000000207810

(8) https://agsjournals.onlinelibrary.wiley.com/doi/full/10.1111/jgs.18457

(9) https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2809588

(10) https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-023-04146-z