The Care Ecosystem: Supporting People Living with Dementia and Their Families

Sounds like an amazing model.

But when you looked at dementia care, you know, out in the wild, not in your system, I guess what felt most broken or incomplete?

Yes.

Well, what I was seeing was that families were having to figure out how to deal with dementia as if no one had ever done this before.

And caregivers were shouldering these burdens with limited support from the healthcare system.

So, you know, patients, the typical thing that we would see is that first of all, a patient is diagnosed quite late after the patient's already experiencing significant functional limitations.

And then by the time they're diagnosed, the family's just trying to figure out what is this? What should I expect? What do I need to plan for? And no one is helping them with this journey.

Families are searching the internet, maybe talking to friends and families who've experienced this, but really navigating this on their own.

When they do get help from the medical system, it's these intermittent appointments that they have to schedule in advance.

So if they're dealing with something that feels like a crisis, like maybe a new behavioral symptom, wandering, agitation, for example, maybe they try to make a medical appointment, they don't get one for a few months.

Well, that's not going to help them with the problem.

And so then things turn into a crisis.

They go to the emergency department.

This turns into a whole cascade of bad outcomes, including increased health care costs.

So this is what we see as sort of typical crisis-oriented and expensive healthcare in dementia that I think can be better managed with a comprehensive dementia care program like the care ecosystem.

From your perspective, how much care sort of happens outside of those medical visits?

Well, you know, it's the caregiver, right? The caregiver is the one who's at 24.

I mean, as the patient becomes more impaired, With dementia, it becomes a 24-7 job, and that informal caregiver is the one that's doing this work.

Of course, if they have resources, they may be able to pay for some in-home care, pay for a day center for the person with dementia to go to so that they can get some sort of respite.

But of course, this is very expensive.

And also, you know, turning to community based organizations that provide services and support.

So this is, I think, what we see out there in the wild of dementia.

And how did some of these gaps lead to the development of care ecosystem? You know, what were you really trying to create that was not already out there?

So we proposed this model to CMMI.

We wrote this application in 2013 and it was funded in 2014.