Despite decades of progress, a new report from the Alzheimer’s Association indicates that more still needs to be done.
The group has identified three steps that could advance dementia care: better training, better use of technology and better payment models.
To find out more, we spoke with Dayna Ritchey, program director for the Alzheimer's Association Greater Cincinnati and Miami Valley Chapters, who has first hand experience with the current challenges.
This story has been lightly edited for length and clarity.
Dayna Ritchey: So unfortunately I have experienced that. My mother was diagnosed with Alzheimer's in 2016. She was much further into the disease than a lot of people are.
But there's not a lot of knowledge in the health systems about what to do with mild cognitive impairment, which could be pre-Alzheimer’s, or what to do with early stage Alzheimer's patients or other types of dementia. Alzheimer's is just the most common type of dementia.
Unfortunately, our physicians don't learn as much about dementia as you might think in medical school, and there's a lot of different neurological diseases of the brain.
Not every neurologist is an expert in dementia. Some of them are experts in M.S. or ALS. There's lots of big diseases of the brain that we're trying to figure out.
And so a lot of people are either misdiagnosed, so they're told that's just normal aging or "you're too young to have Alzheimer's."
This report also showed that there's 200,000 Americans that are younger than 65 now with Alzheimer's.
Some as early as 30s that could have Alzheimer's, and so having a disease at an early age, or having a disease that doesn't look as disabling as you might expect it to in those very beginning stages, it's hard for physicians and their support staff to know what to do with you.
And then on top of that, there is this increasing pressure and knowledge.
Now that we finally have some treatments that could stop the progression for 3 to 6 months, up to 3 to 6 months, potentially longer, in a couple of drugs that have been approved by the FDA. But they have only been helpful to someone who has mild cognitive impairment or is in the earliest stages.
They are infusion drugs, so it's not something you can take orally. So you have to get to an infusion center, and you have to get to a neurologist that understands these drugs and can diagnose you with them or can prescribe you to take them.
That's a lot of pressure in the system, because consumers, citizens who have read up on that, they want to potentially be candidates for those treatments.
They may sit on a waiting list to get in or the neurologist for a year. So there's a lot of pressure coming from the inside now into the health care systems to figure this out. Because we know that it's time sensitive if we're going to potentially be a candidate for treatment.
Jerry Kenney: That extended waiting list is unfortunate when you consider that 3 to 6 months of halt on progression could mean a world of difference for families who are looking at that clock. Where does the remedy for this challenge start?
Ritchey: Well, I think it starts first of all with, CMS. So, you know, the Medicare/Medicaid arm of our government this summer, they are coming out with a model on what dementia care should look like within the health care system. What is the navigation? Because it's not just on our health care systems. They need a guide. They need a model. And so it starts at the top.
Kenney: So we'll keep an eye out for that. But what about from the bottom up. What kind of local services do we have access to?
Ritchey: We offer a lot nationwide and locally that people don't know about.
We have lots of support groups for family members who are going through this disease. Some of this education is grassroots education from other people who've gone through this journey. And they want to help. They want to provide emotional support to families who are now walking in their footsteps.
We also offer lots of free education programs. We offer education programs on more than just caregiving.
Our programing starts back with what are lifestyle changes that you can make to keep your brain healthier. We would love to have more hosts and organizations that would allow us to come and give those programs so that, you know, helping us raise that awareness, have us out at your health fairs, that your senior fairs.
You can help us get that awareness out there, and that can start at that 800 number. So that number is 800-272-3900.
