Transcript:
Welcome everybody, to Let’s Talk About Dementia. The goal of this series is to share helpful and valuable information about dementia and today we are fortunate to be joined by Lynn Biot Gordon who co-founded NCCDP in 2003 and has many many years of experience in the dementia care field. So Lynn, would you mind taking a moment to share more of your background with the audience?
Sure, I’ve been in Elder Care for 36 years. I actually started out when I was in College. I was working part-time as a social worker in a nursing home and then when I completed my Master’s in social work from Boston University I started working full-time at my nursing home and became a social service director. That was 36 years ago and I haven’t left eldercare since.
Wow, great work thank you for sharing that background and I was curious if we can start by talking about what is dementia?
So, dementia is really the word to describe the set of symptoms that a person expresses and oftentimes you’ll hear people interchangeably use the words dementia and Alzheimer’s but they are different so really when we use the word dementia we’re talking about the symptoms. So, we’re talking about deficits in language, memory, orientation, learning, and then when we hear people mention Alzheimer’s that’s really just one disease. There’s over a hundred diseases that cause dementia. So, when we talk about the symptom of symptomatology, excuse me of dementia, we’re really talking about the expressions of the person and really we want to fine tune it. What is the disease that we’re talking about? What is the disease that’s causing the symptomatology?
Got it and would you be able to go into a little greater detail about those signs and symptoms associated with dementia?
Okay, so first of all you’ll start to see short-term memory problems and then you’ll find that some people start to have word finding issues and then you’ll start to see some problems with concentration. So, if someone is, let’s say, watching television while they’re writing out their checks, now you’ll start to see maybe that they’ll lower the volume on the television so they can better focus on balancing the checkbook and writing out those checks. So you’ll start to see that in the beginning, what’s most prevalent though is the short-term memory issue. Some people don’t even realize that they’re having short-term memory problems. So, someone else will say to them, “oh. you just asked me that question.” and they said, “did I,” you know. So, you’ll start to see that because sometimes people don’t recognize it in themselves, at first. Someone points it out to them. So those are some of the early signs and then as it progresses you start to see, you know, of course decline, an increase in confusion, and increase in short-term memory impairment. So now, if someone you know doesn’t remember something that maybe happened last month or a week ago. Now they might not even remember that they’ve had breakfast this morning so you start to see the progression happen and depending on what disease they have the progression will be fast or slow. You know? So, different diseases that cause dementia have different kinds of progression. Most of them have slow progression but some have kinds of rapid change too.
Okay would we be able to go into more detail about the progression specifically? Are there stages commonly associated with the progression?
Yes and usually it depends on what research you’re reading. You’ll hear dementia described sometimes in seven stages but to simplify it most will describe it in three stages like early, middle, or late. (early, middle, and late I should say). So, in the early stages, as I said, you’ll start to see, you know, short-term memory problems you might start to have some concentration issues involved and sometimes you’ll see personality changes too only because usually someone’s getting frustrated, because they know they’re starting to have cognitive problems, you know, and then as that stage moves on, as it progresses, then you’ll start to see (what we would call in the middle stage) where the short-term memory becomes more of a problem. That now, as I said before, rather than just forgetting what happened a month or so ago we might not even remember breakfast from this morning. Also what we’ll start to see then is mood swings. Sometimes time-confusion and especially during the fall when we have less sunlight, you know. So, sometimes a person drops off and snoozes and they wake up and they see the clock says 6 p.m, 6 o’clock excuse me, they might not know if it’s 6 a.m or 6 p.m. Right? Simply because it’s dark outside. So, you’ll start to see a little time confusion. Also during the middle stage, you might start to see change in eating habits because what’s starting to happen is we might forget how to prepare meals or we forget the order to prepare the meal and what I mean by that is if someone is used to cooking an elaborate recipe they might miss step or miss some major ingredients. So, now they start doing things that are easier quick fixes, quick foods, you know, just heat up tea and toast, pop open the can of tuna. Also what you’ll start to see too, is that we start to sometimes have the perception that things don’t taste the same so now we’ll want the extreme of flavors so now we might want extremely salty extremely peppery extremely sweet. (uh-oh) So you know, we might start to see that also with you know a change in eating habits so that’s something, you know, that is again Progressive. You won’t see that usually. Not very early on, but you do start to see those change in eating habits. Also, with speech and language, just you know, somewhere in the middle stage you start to see more word finding issues that increase as well as losing their concentration in the middle of a sentence and finding and sort of replacing words with other words you know. Saying sort of dead end sentences, you know, instead of saying, “hey, did you park your car in the lot?” They might say, “oh, did you park the thing?” You know, and that’s that spot you know we start using other words and even sounds, you know, like I was just talking to someone recently and they were trying to express something to me and instead of saying the complete sentence they ended it with, you know. So I thought okay I know what I see I know but I’m you know I know I understand the expression so you know and and being around a person you start to see some of the same patterns they’ll start to use some of the same sounds or phrases and you get to know what those things mean after a while you’re spending, you know, consistent time with them. So as it progresses then when we move from you know mild to moderate to severe case now what starts to happen is we might not be able to really complete full sentences anymore we might just have very few words left in our vocabulary. You know so we might just say you know some words like Mama Coffee TV and as a caregiver it’s up to us to try to figure out what that person’s requesting or what they need because they only use these small sets of words now to communicate and again that takes time.
The more time you spend with that person you get to know what those special words mean or nuances and phrases that they start to use. So, that’s one of the things that we start to see more. So, in the end-end stages also we start to see more physiological changes during the end stages-like incontinence. So, you start to see bladder and bowel problems. We might start to see swallowing difficulty and that’s where people are making, families are making, the decision about, you know, feeding tubes or other, you know, alternative methods for nutrition. That’s when the person starts to usually also start to have gait issues. Sometimes that’ll start in the middle stage too, so you’ll see that they’re not, they don’t have the same coordination they used to have. So, there might be a lot of things like trips and slips and falls, that kind of thing, which unfortunately sometimes leads to, you know, fractures and surgery, unfortunately. So, once we get into the end stage, the person obviously needs a lot more care and usually cannot be left alone. At that time, all their meals and all that need to be prepared for them medication of course has been probably managed and monitored from middle stage forward. (yum) So, at that point they are what we would call um you know total custodial care with that because at this point they need you know someone to do their laundry for them, organize their clothes for them, you know just everything at that point as opposed to like the early stages jumping back and forth in here a little a little bit. Early stage you might find that people are still able to organize their clothes and then gradually they’re not able to so they’ll start to wear you know like the winter coat in the middle of the summer time, you know, and then you start to see judgment issues just like still driving the car even though they’ve gotten lost a couple times coming home from the grocery store that they live around the corner from and that’s where families have to make some serious decisions, you know, because a person no longer has the ability to reason. They are no longer safe doing that.
Another thing that happens usually mid to end stage also is visual perception starts to change a lot. So you might find that a person does not have you know sharp visual Acuity anymore. So they might not have full vision, say, to their right side. So, if you’re talking to them and you’re sitting on their right side you might need to now change your position and face them directly or if you sit their meal on the table to their right side they might not ever see the meals. they might not ever eat if you’ve left them independently to just have their lunch and it’s out of their field of vision. So, we start to see those perception changes also with perception we start to see also that sometimes dark patterns impact them as well so if they’re walking on a floor that’s a black and white checkered they might see the black spots uh with say a kind of like a misperception of depth perception and they might think that that’s a hole in the floor. So you might see them walk and stop and you don’t know why they’ve stopped but it’s because they might think that the the black square on the floor is a hole, you know. So what they’ve taught us for years in the facilities is you know to make sure people don’t wander you might want to have like black carpets around the exit so that people will you know think that it’s a hole and won’t step in it. Although some people see it for what it is a mat and they’ll step right on it and walk right out the door right so it varies you know. What you know the thing about dementia is we’re all very unique, you know, just like anybody our chemistry is all different, you know, just like some of us are diabetic and some of us have hypertension. You know, with dementia it affects us all differently too. Our chemistry is different so some people’s progression will be faster than others and some people won’t have visual perception issues.
Thank you for going into detail about the progression of dementia. Clearly you’ve been doing this for a long time and have a vast set of knowledge about dementia. I think that’s a helpful framework for the audience to think about the progression in those three simple categories so thank you again for that rundown. Now, I was curious if you could just discuss in greater detail the causes of dementia?
Wow, that’s a good question, because for some diseases that cause dementia it’s still unknown. What brings it about in other cases, it could be related to other medical problems like cerebral vascular disease. Like someone who’s had a stroke can be effective with dementia someone who has another kind of brain disease that will cause malfunction of oxygen or blood through the brain, so that can cause dementia. So, there’s a multitude of reasons that someone could have dementia you know based on what their comorbidities would be or what their other illnesses would be. Also, it can be related to the multiple concussions we have found historically now can cause what we call CTE so chronic traumatic encephalopathy. So that’s from you know multiple head injuries and that can eventually cause enough nerve and brain damage along the spinal cord that eventually causes dementia. You know, so there’s a multitude of causes. When you ask me that it probably would depend on what specific disease we’re talking about, but in general those are the basic causes. Some are just unknown, some could be related to multiple head trauma, and others could be related to just multiple illnesses that might be causing disruption of blood flow or oxygen.
Okay, and a follow-up question. Is dementia hereditary?
There is a hereditary component, but what researchers have found especially with Alzheimer’s disease is that there are what they call Alzheimer’s genes and you can actually do a blood test to find out if you have. You know, a combination of any of the Alzheimer’s genes does not mean you’re going to develop illness. So, we can’t say for certain that your hereditary is going to catch up with you. In a lot of cases it does, because we do know in terms of developing dementia your greatest risk is aging. The older we developed dementia, heredity is also a factor too if you have a first degree has developed dementia you have increased your risk automatically of developing dementia. But again, don’t be frightened. It doesn’t necessarily mean you’re going to develop it. It just means your risk is higher than someone who doesn’t have those presentations in your family.
Okay got it. Got it. Thank you, it’s very helpful. Last question for you. Is there a cure for dementia?
Unfortunately, not at this time. That’s been long-standing for over 100 years now studying the different kinds of Dementia that can, you know, affect the brain. Right now, the good news is we do have medications and those medications are not meant to be a cure or a prevention and they cannot reverse your condition; however, what the medications are designed to do is to try to create plateaus for a person. So that rather than having a rapid decline in their illness, that we get you know stair steps of you know plateaus of wellness before drops of decline. So that’s really what the medications are designed for. So we never want a family member to have false hope in the medications. Another thing to remember with the medications is that again as I said our chemistry is different so one person that has a really good response to a certain drug another person might not have that same kind of response. It’s a very individual thing as well in terms of body chemistry and how we absorb the different medications too so you know just because someone says oh it worked well for my grandmother, she was able to continue to feed herself for a long time. It might not work well for someone else’s brand.
Right, right. Well, that’s a wrap in terms of questions. Thank you very much for your time as well as your expertise. I’m sure the audience has found it tremendously helpful and it’s been a pleasure to speak with you Lynn. Same here, thank you so much.
