For this very special episode, I was honored to be able to interview expert on Alzheimer’s and Dementia, Teepa Snow. During our discussion, Teepa and I spoke about everything from care to causes and what needs to change in the systems to allow for more humane treatment of loved ones with Alzheimer’s and Dementia.
How did you come to be the expert’s expert in Alzheimer’s and Dementia?
It’s interesting, I would have never thought that. But I started off doing a lot of work with the USD School of Medicine and I was part of a team when I graduated and got my Occupational Therapy degree. I have worked in long-term care, so when they were looking for somebody it seemed like a good match and I had the good fortune to work with a good nurse, a good social worker, and then a couple of really good strong, family practicing general internal medicine physicians who understood geriatrics really well. That allowed me to learn the art of working with lots of disciplines, but to work with people that have Dementia.
Then I did some work with head injury, and I did that for three years. I also went back and worked again with Dementia in a psychiatric setting. Then I did home care and community care, and I worked at the VA. During all this time I kept building expertise in geriatrics and I find more and more I understood Dementia and could work with those with Dementia and show improvement while working with their caregivers a lot better than most of my colleagues. I found it interesting and exciting, not scary and awful. During that time I’d also be doing in-services and training, so as time went by people would start going with me to do things. Then I worked for the Alzheimer’s Association as the Education Director in the eastern North Carolina area. We made a couple of training videos because we were doing workshops, which lead people to want more and more workshops. So we thought, “Okay, let’s develop a video now.” The video became the video used nationally by many groups that addressed the issues one would face when trying to care for someone with Dementia. From there it snowballed.
Listen to the full interview here:
What would you say has been your experience with patients with Alzheimer’s and Dementia? And what is the difference between the two?
That is the most common question I am asked. Think about Dementia as a great big umbrella, and under that umbrella, one of the boxes is Alzheimer’s disease. But there’s other boxes: there’s frontal temporal lobe Dementia, there’s alcohol-related Dementia. So we’ve got a lot under that umbrella, but if it is under the umbrella it means four things: 1.) that at least two parts of the brain are starting to die, and what’s causing it will vary. 2.) as of right now, if it truly is Dementia, there is nothing we can do to slow it, stop it, or turn it around. We don’t have anything to rid of it; none of the drugs change the disease. 3.) if it’s truly Dementia, it’s going to get worse, it’s going to progress. All sorts of Dementia are neuro-degenerative, meaning they kill off the nerve cells in the brain. 4.) they’re all terminal illnesses, and once you have it, if nothing else kills you first then it will kill you. It will destroy so much of your brain that your brain can’t run your body anymore. So if you make it to the end, you’ll die of pneumonia because you can’t coordinate your swallowing and your breathing and your ability to fight infection, so you’ll get an infection in the blood stream that you can’t fight. If you get dehydrated and your brain says, “You don’t need any fluid”, your brain then says that you’re done.
We didn’t used to keep track of that as Dementia, but it’s actually the Dementia that’s causing your body to shut down. And now it’s the 5th leading cause of death for people over 65 and the 11th leading cause of death for all ages.
And the only one we don’t have a cure or treatment for.
That’s right, nothing that does anything for the disease. The only thing we have is some people benefit from some of the medications some of the time for a short period of time. That’s it, that’s all we have. Care therefore becomes the critical feature, and yet if we look at our care patterns and what the government support is, it’s nothing. We do nothing for people living with Dementia, we manage their acute medical illnesses poorly because primarily we don’t know what to do with Dementia but I can fix the UTI. So what I’ll do is tie you down and give you antibiotics. Well, what’s going to happen the next time? We’ll do it again and again, but where are we going with that? So we unfortunately put people through a lot of distress because no one really understands what the disease looks like. Doctors think, “I can treat that” but yet they can’t treat the Dementia.
Does a living will help in these situations in any way?
Well, let’s say I have an advanced directive that with any other health condition would be honored. The only state in the nation right now if I developed Dementia would be Oregon. In every other state, Dementia precludes me from having my directive followed.
You unveil an important point, which is the living wills apply to when someone is terminally incurable, brain death has occurred and they’re being maintained by respirators. That doesn’t count for this situation where the mind is not coordinating with the body.
This idea of competence is really complicated when it comes to Dementia because although I may not be competent to handle financial affairs, I might be competent to decide whether or not I want turkey or chicken for dinner. But that’s not how we’ve divided the pie here; it’s all black and white.
So the legislature needs to work with people like you that are on the front lines in developing laws and directives to account for situations like Dementia and Alzheimer’s.
Yes, because they don’t exist. With feeding tubes, they came to the realization that actually we weren’t improving anybody’s life and the value of doing that was actually nil. It actually didn’t change the quality or quantity of life, it made people more likely to have bad things happen.
You deal in the healthcare industry on a regular basis. How much abuse of those directives is present?
It’s possible, but let’s figure out what’s going on, and I would think the abuse that goes on to the people who have Dementia is much worse right now because they are put through things that I don’t know how anyone can do to another human being. And they call it “care”.
I’ve said before, we treat animals in end of life situations better than people.
Right, where is that going to take somebody? And to get people to take that step back and go, “Guys, this is not euthanasia like you’re talking about. I’m not taking somebody’s life away from them, I’m helping them do the things that they really value.” And yet we are more than willing to restrain people, tie them up, give them additional medications to make them protest so that I can deliver the “treatment” I believe they should have so they can live three more days.
With zero quality of life and lots of pain. That’s ridiculous.
How many times are we going to put somebody through this before we say, “You know, they said no.” Okay, let’s people together and work through this before we get to this place so that we’re really acting in the person’s best interest. Not working from anyone’s opinion, but what the patient clearly asked for before this started.
This is going to be a movement from the ground up. I think Wisconsin and Minnesota are dealing with the issues, and they’re dealing with the issues because they, like North Carolina, have a large rural aging population. The resources are changing, the care situations are problematic. And people would rather die on their farm than move into a facility and lose their sense of identity and purpose. So how are we going to deal with this? Something needs to change about how care is delivered; people would never choose that. You walk into these places and you go, “Yes, better than it used to be”, but would I live here? Absolutely not.
People pay phenomenal sums of money for an intensive care stay at the end of life for no decent outcome whatsoever, no quality of life during the process. And yet we will not pay a penny for the person to be cared for in a different situation.
With 2/3 of the population being over 65 since 2010, Dementia and Alzheimer’s on the rise, you have to be able to identify it and then know how to react to it to give proper medical care.
And yet there is no requirement at all for hospitals to have any kind of training in Dementia, for EMS services to have any kind of specific training in Dementia or police and fire departments, yet they’re the front lines, they’re the people out there in the community.
The civil rights issue for people living with Dementia is finding that balance between what support and care I do need, and people making decisions about me without me, and me being able to be incarcerated for the rest of my life without a trial. If you put me in a secure unit, I may never get out again. Who’s to say that I’m there by virtue of what’s best for me versus what’s best for my oldest son who decided that I was causing a lot of trouble and it would be easier for him to manage my estate without me being present.
Right now across North Carolina, it is permissible to lock people up and it doesn’t matter what they want or what they think. It’s rampant, and it’s a knee-jerk reaction. At a national level, the conversation is happening regularly. Yet nobody wants to address this because you’d actually have to address this.
That leaves a good question on the civil rights issue: who’s going to fight that issue, and how do you fight that issue when you really don’t have a client that’s competent to be had?
What I think we’re going to see is more and more younger onset patients say, “No, you’re not going to put me here.” And what happens is they typically get kicked out to the psyche unit and back because they get in trouble. So people are not sure what to do with the young onset people, and I think some will end up being lawyers and judges and someone is going to say, “I’ll take you to court.” I think we’re getting to that point where there are enough higher profile people who are getting this condition who are smart people, and they’re going, “Wait a minute, you can’t just do this to me.” And up until now there’s been just a few of them, but I think the numbers are starting to rise a little bit.
Has this always existed throughout time with humanity? Or is this something new? It seems like this wasn’t the case when I was little; it was senility. But were we just calling it something else?
Some of it has been around but not the amount and not the intensity. Our lifestyle is dramatically changing and our environment is changing, not only the environment of the brain but our environment and how we live our lives is very different than it was a generation and a half ago. I think when you start doing that over time, what we’re finding is high stress, sleep deprivation, and high sugar intake with limited opportunities to socialize and engage leads to certain types of Dementia in that umbrella. Certain types have become much more prevalent than what we used to see. We never saw it like we’re seeing it now. We’re also seeing more young onset situations. So I think we have lots of different things happening, but now we’re seeing an increased number of survivors who live long enough to whom the things that wouldn’t have happened because they were gone, are now happening. If you look at many of the young onset folks, you’re going to see the high intensity people, and they worked really hard to the point where they never gave themselves a break. We know that with people who are high-risk worriers – worrying is a bad habit because you can’t let it go – the risk goes up.
It’s been a pleasure to interview you. Thank you
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