From the Alvin and Rosalie Sara Check studio PBS Kansas presents Empowering Seniors Welcome to empowering Seniors I'm your host Kathrine Ambrose Today we're talking about dementia and just the aging journey in general We're with Doctor Tam Cummings We're so excited to have her in Kansas to be on empowering seniors Doctor Tam thank you so much for being here Thank you for having me I am so excited I love PBS and I got to tell you that Kansas is a lot greener than Texas right now Well we're so glad that you came up here to to Kansas And so I met you last year briefly A local memory car community brought you in to do a free class thank you so much for coming in maybe a day early so that you could be here on the show I'm delighted to do it I know that when you are doin the conference that oftentimes people receive the itty bitty dementia book thing and you've written several books So let's let's start there You're a gerontologist Correct And you're subject matter experts and wanted across the country You travel all over the place to talk about dementia Yeah So let's start with with your journey What brought you into this this subject matter field?

It was actually when I was a press secretary for congressman and we visited the white Hous frequently because we loved Mr Reagan And I noticed that Mr Reagan didn't seem to b in the room with the rest of us And it was a very intriguing to me as to why didn't other people seem to see what I was seeing?

And I actually ended up leaving Congress Going back to college I got a social work degree I spent five years in a nursing home skilled facility to see how that worked Then Baylor told me if I would behave myself I could come back and go to graduate school There I did and then I did post-graduate in educational psychology so that I could understand better how the brain learned so that I could better understand what's happening to the brain of a person with dementia And just went on from there And you wrote your first book on dementia about 2005 It's called Untangling Alzheimer's And what does that mean untangling Alzheimer's?

You kno we thought it was a clever way to help people realize that the tangles that happen in Alzheimer's or in the other dementias are happenin because the brain cell is dying and the tangle itself is the tangle of the roots as they begin to shrivel up and die And that was the idea for the book And people at that time were hearing Alzheimer's It has tangles and plaques And when you look at it on a slide the plaque is actually bon plaque and it's a dark grayish blue and the tangles tend to be a slightly different color So you can see distinct differences in them And it looks just like a tangled up If you took a bunch of thread and pulled it apart and then just rubbed it and tangled it up It literally they look like that let's talk about the difference between dementia and Alzheimer's People can be very confused about that Absolutely One of the most common things I hear is that my mother has dementia and Alzheimer' and what their mother actually has is a dementia of the Alzheimer's type So dementia is the umbrella term for a group of what is estimated to be 12 forms of terminal brain disease 72 of them we refer to as group is children's Alzheimer's I don't ever deal with them The parent takes care of that child Of the remaining one there are nine that constitute about 98% of all the dementias and those are the main ones that we look at If you're person has one of those other ones they're so rare that there's not going to be a lot of information on them So not not a lot there So 98% of dementias are nine types And can people get a diagnosis today Oh yeah You can have any dementia diagnosed without an autopsy Now as I say that chronic traumatic encephalopathy CTE football dementia If your loved one was part of that collective bargaining agreement with the NFL there brain must be autopsy for the NFL to do what they agreed to do in the lawsuit In terms of the payment for care But otherwise dementias are pretty easily if you understand the clinical features and how the process works You can as a family member remove the dementia You know your loved one cannot have And then when you go to the doctor you're bette prepared to talk to them about what are the changes that you're seeing becaus you're not using medical terms So the doctor's not hearing that You're saying there's a change in her mental status Which is the term I would use But the family member goes mom is acting differently and that the physicia has a little more trouble with Okay And so the better you can communicate maybe the better answers you'll get Absolutely And being able to go in prepared that when we look at studies in Europe because they're socialize medicine they're able to track the diseases better than we are because in our country we don't go to the doctor til we're sick whereas in socialized medicine they go to the doctor routinely so they're able to catch things much sooner than we are And that helps them do a better job of identifying the disease process at the very beginning rather than stage five which is typically when our country's people are identified Okay So very interesting shows of family How would you eliminate some of the ones that it probably Okay Well let's let' look at my mother 84 years old She never played football So I can mark off number nine CTE My family does not have Huntington's That is an inherited dementia So I can mark that one off when they ask her to cough Is alcohol dementia?

If you drink too much your brain can't use and produce thiamin And that's what causes that dementia My mother's never had a drink in her life The next one is Parkinson's disease Dementia But if you don't have Parkinson's disease you can't have the dementia So we can mark that one off She's too old for the frontal temporal dementia group These are dementias where we really see the in the 40s the 50s and the 60s We've got a few peopl that have lived into their 70s but these are considered younger person's dementia at 84 My mother's too old for FTD I can mark that out Lewy body is the fourth most common dimension Lewy bodies has these very unique and very interesting hallucinations And they're unique to Lewy bodies because of how specific they are People with other dementias can have hallucinations but these are so specific They see children bugs spiders rats and snakes Something you and I are hard wired in our brain stem not to like As humans they see bad people coming to get them And what's interesting is they will frequently describe the same thing something that sounds like their house is being assaulted by an army or a Swat team or there's just bad people in their house that they can see And sometimes Catherine that bad person can even be their own son or daughter And so that's an especially terrifying hallucination because these don't happen for a few minutes They go on for hours Oh my gosh And then the fourth hallucination and the one that is a dea clinical marker of Lewy bodies is that the person with Lewy body dementia sees their caregiver or their spouse having sex with everyone And interestingly enoug a lot of times part of the wild sexual activity is happening in front of the local grocery store So in Texas I hear a whole lot abou she's out in front of the H-e-b If I'm in Florida it's at the Publix where all this wild shenanigans are going on If I'm in the North it's at Albertson's or one of their stores So it's very interesting how the grocery store gets picked but the rest of the hallucination is the real reason you're taking me to the doctor is you're having sex with him And the real reason the Fedex man comes here is you're having sex with him The yard man the maintenance man my own brother You're having sex with him So there's this sexual thing Well Catherine I don't want to think about my parents having sex Do you want to think about having sex?

And so people get so horrified that this person is talking about sex and they're a parent or you're the spouse and you don't want to tell the doctor because you're so horrifie because it never occurred to you to cheat on your on your loved one and now you're being accused of it And so you don't tell the doctor the children don't tell the doctor And yet that is critica because people with Parkinson's and Lewy bodies are much more sensitive to medicine than people with other forms of dementia Well my mother doesn't have those hallucinations so I can take off Number Number?

The number four for Lewy bodies But my mother has obesity and cellulitis She's had three heart procedures She has AFib and congestive heart failure She has high cholesterol high blood pressure She has documented strokes She grew up with a smoker She lived with a smoker She gets pneumonia all the time Any of that sound remotely vascular?

So that's all vascular So I'm going to put an X next to vascular And then anybody who has an dementia and lives long enough we know that Alzheimer's will join it And Alzheimer's is considered a first cousin of some of the dementias Okay Vascular dementia typically takes years to develop My mother was kind enoug to give me the high cholesterol I appreciate that so I have to make sure I pay attention to that But it takes years for those vascular conditions to finally develop into a brain disease But once it does Alzheimer's will then join it So given that my mother's in her 80s I would go back to the doctor to discuss a form of vascular dementia probably something with the word multi infarct because we already know she's had strokes So a stroke is an infarct and also because of her age late onset Alzheimer's And that will be a slower moving slower progressing Alzheimer's because of the person's age So what is brain disease And when we're talking about these dementia what's going on in the brain The brain cells are dying And based on the type of dementia it's determine by where it begins in the brain So Alzheimer's is a cortical dementia begins on the outside of the brain It starts up here It moves into the motor cortex and the premotor cortex And what do you think the motor cortex of your brain allows you to do?

Motor aroun maybe be able to move your body So people with dementia all fall because of brain damage But the type of dementia it is determines how the brain cells are dying and they're predictable So we can build staging tools And by using those staging tools you're actually able to jus observe your person's behavior check off where you see and it will bring you down the tool as is as the dementia progresses Every day your loved on wakes up with fewer brain cells than they had the day before But this is something the families aren't told and they don't understand Most families are told your loved one has dementia After giving them an orientation test called the AMC the Mini Mental Status Exam They're not actually given the dementia test because if they were a dementia would be identified much earlier And insurance companies don't want dementia identified earlier Wow So we run into issues there of doctors being told what tests they can and cannot give Oh my I know it's it's confusing to families in a disease that is so complex People don't realize the brain runs the whole body So people will call me and say well he's not that bad And she's already described someone who's missing half a pound of their brain tissue By brain death The neurons die Some of them are starved to death and can no longer taking glucose or nutrition from the blood supply Lewy body The protein Lewy which is the name of the protein name for Doctor Lewy pushes into the brain cell and eventually it explodes and when it does it kills that neuron And then at night when you and I go to sleep the brain removes those dead brain cells Now you and I lose a brain cell Our brain replaces it But a person with dementia their brain is dying And so what we as human tend to do because we're natural teachers is I see you doing something that's not the way you're supposed to do it And because I love you I try to help you and say no that's not how you do it There must be something wrong with your brain I know there's something wrong with your brain Well it turns out that it's a huge insult to humans to say there's something wrong with their brain And if you said that to me right now I'd get fired mad I'd be ready to throw down because it's a huge insult And so families think they're being helpful and they're actually agitating the person The brain has a condition called ignores and nausea It's the inability of the brain to know it's sick Oh so you know I twisted my knee My brain knows I twisted my knee but my brain wouldn't know if it had dementia It wouldn't understand that it was dying And it would begin to use this weird logic A common thing that is seen in dimension stage five is that the caregiver is accused of theft You stole my purse You stole my house You stole my car You stole m bank account You took my money You're probably stealing my food You're a bad person Catherine And I know that because my brain says this is where I always put my purse And now it's not here But you're here so you must have taken it So you see it's this weird logic that they're doing But families you're horribly embarrassed You're afrai I'm going to tell your friends and other family members that you're stealing from me You know you're not stealing from me And then when I move to memory care I'm going to tell all of them You're stealing from me too I I hear these stories and I think oh my gosh that's going to be me Because if I'm missing something I'm going to automatically think who took Yeah and let I need the test I can do it later And later on at three in the morning you thought I went to bed I'm very busy Dementia people are very busy We're up hunting and gathering and looking for things everywhere I find my purse in the freezer and I don't think I did that when I brought the mail And how silly I need to call Catherine and apologize instead I think she hid it in the fridge an she thought I wouldn't find it I better go hide my purs and come back and do this again because she'll be back here tomorrow and she'll try to steal my purse Wow And so families take this very personally It's your parent They're accusing you This is your spouse They're accusing you this And you know you didn't steal the purse But you can't argue with a teenager they've got hasn't go well Yeah well you're not going to win They've got a lot of chemistry going on in the brain And the brain's pruning itself in your mid teens Then you can't argue with a drunk person because their brains impaired by alcohol Right And you can't argue and reason with a person with dementia because their brain is dying That's so important to grasp Yeah And and you say dying I think that is so important to hear that part of it And you said that half a pound of their brain might already be gone Most of the time By the time a diagnosis is made half a pound of brain is gone And they're not in mild cognitive impairment which is stage two of the disease because in mild cognitive impairment your brain was still so healthy that if you had a glitch you immediately corrected it Stage three the spouse starts to notice hey something's wrong And they try to pointed out to you and help you but you chop their head off and give it back to them They stop bothering you The children the adult children usually notice in stage four and then in stage five families begin to seek outside help And by that point they may be able to find a physician who will give them a diagnosis But the diagnosi actually requires about 28 test It's an MRI a Cat scan a Spect scan a Pet scan an EEG an EKG certain types of bloodwork and then a dreadful day of neuro psych testing Oh boy Yeah I would run away if you made me do that And so at that point how much math may they have lost?

Possibly by the time most people in our country are diagnosed they've lost at least a half a pound of brain tissue Okay And it's and it's not you know the families tryin to get them to go to the doctor and the family thinks they're in denial They're not in denial The person with dementia thinks the family is crazy because their brain doesn't know it's sick Wow And so just think about it How much fun would it be if I followed you around all day tomorrow?

And every time I thought you did something wrong I pointed it out to you Oh yeah that'd be fun wouldn't it?

You'd love to see me come in would?

Yeah Right And then how about I take you to the doctor and in front of the doctor I tell him that you don't take baths Now I've embarrassed you in front of the doctor And a lot of people really get fooled by the physician visit Because a doctor comes in and what is the doctor's uniform White coat Stethoscope Doctor's office Right Respect Absolutely You and I have been taught all our lives These are the people that we respect and admire But the doctor comes in and starts the social conversation with you which has nothing to do with cognition It's a very old memory deep in your brain That you begin to learn the day you were born and it starts with hi how are you And you say oh I'm fine And when families take their loved one to the doctor the doctor walks in and goes hi how are you?

Because I'm fine He's got social skills I'm fine And the family member just wants to kick the snot out of you and they accuse you of being in denial and you're not in denial The family doesn't understand The human brain doesn't know it's sick So the brain is just kind of gone on to autopilot and it's running all the systems So the family says well he's he's his dementia is not that bad or he's only got a little bit of dementia And I try to remind people you're either pregnant or you're not You can't be a little bit pregnant either pregnant or you're not You either have dementia or you don't It's just how advanced is it?

So with siblings sometimes you have maybe a caregiver sibling that's taking care of parents and they're trying to let other siblings know things aren't going well from long distance What happens?

The sibling who lives far away will call They'll talk to the parent with dementia and the conversation will be hi how are you?

I'm fine honey how are you?

Oh I'm good I'm good How's the weather?

Oh it's beautiful out My weather's good too How are you feeling today?

I feel great honey How are you feeling?

I'm good I'm good And then we hang up and I call my sister to say I don't know why you're pretending that something's wrong with mom I just talked to her on the phone and she's just great And you're sitting next to me and you know that I don't even know I was on the phone and I don't know who I was talking to I don't even remember it Yeah And so siblings go through that quite a bit And then research has actually found that there are different types of siblings Sibling numbe one says something is wrong with mom or dad We got to build a plan We got to figure out how we're going to do this how we're going to take care Sibling number two says you should do that Sibling number three says all old people get dementia It doesn't matter And honestly I can neve remember what number four does But they are worthless And sibling number five say what are you all talking about and trusting?

And what are you talking abou is the one that's on the phone with mom going and she's just fine I bet you viewers are identifying with some of that because that's just like normal human behaviors and personalities And I've seen familie where everybody's a number one and I've seen familie where everybody's a number five And then we have families of multiple marriages and stepkids and we've got some children don't want anything to do with it and you're taking care of it so they don't care And in the past as parents got older children left their jobs in the city and came back to where they grew up And now children in the city move mom and dad to where they are And so we've seen a complete flip flop there as well So let's talk about caregiving Who is a caregiver and how is this impacting what's going on today and in the future Well the first primary caregiver is going to be the spouse or an adult child and sometimes even a friend What's scary about the future is the baby boomer population is the largest population in the world has ever seen We have more people alive right now over the age of 65 than in the history of the world and we don't have enough caregivers now And because the population behind us is so much smaller it's somethin that is a constant worry as to how are we going to take care of this older population because we've got a bigger population therefore we're going to have more more types of dementia So it's something that people are very frightened about so what should people be thinking abou in terms of caregiving right now and then thinking abou caregiving for themselves later?

Caregiving right now is scary The death rate for the famil caregiver is we anticipate three out of ten of them will die before the person with the terminal brain disease dies As the direct result of the stress of care To give you an idea if you're taking care of a stage five person at home it takes 12 professionals to do that same level of care and a stage six person when they finally actually look sick That takes 16 people And if the person is stage seven and bedbound that takes about 18 professional to do their care during the day So if you're 87 year old mother is caregiving for your father she's doing the work of maybe 16 people Absolutely And because of how we work i families everybody gets really focused on daddy because he's sick and nobody looks at mama And then suddenly mama drops dead and you realize how ill daddy actually is And so for some I've known families that didn' figure it out until the funeral how sick their loved one actually was So that's really sad And you know when we were talking about dementia you were using mostly female examples of dementia Is that because it's more prevalent in females?

It it's not that it's more prevalent The numbers are actually about equal It's just that women still outlive men And so the populatio when you go into any community we're going to see a higher population of women because they've outlived their spouses Okay And that's it Otherwis the numbers are just about 5050 I see a lot of frustration online and social media different groups where let's say adult children are talking about parenting their parents and really complaining about their parents and their caregiving situation And it just looks so hopeless in a way and that they really just don't understand what their parents are going through And that's causing more frustration Oh absolutely They don't understand It's a terminal disease We are the only country where people leave the doctor without being told they've been given a terminal diagnosis which would have given you time to prepare financially If they had given you the diagnosis and told you what was going to happen So if someone is diagnosed with cancer let's compare kind of cancer to brain death It's if it was cancer you're going to have meetings with all sorts of teams of professionals that are working for your loved one in the average family As a caregiver in cancer for two years and only 34% of cancers are terminal in dementia The average family is a caregiver 10 to 15 year before they reach out for help and 100% of o 100% of dementias are terminal Okay And you were talking to about the different types of dementia just like there's different types of cancer And and then there's different domains and variations within each of those cancers It's not one form of Alzheimer's There's multiple forms of Alzheimer's And what is the benefit to everyone involved?

If you have a better understanding of what exactly it is that they're dealing with you'll understand that these behaviors are part of the disease They're not being they're not happening on purpose They're they're not being driven by meanness You're just watching brain death And you'll understand what's going to come next I believ knowing the name of the monster doesn't get rid of the monster but at least you know now this is what they're doing and why And we give that respect to people with cancer and to our older population the ones most likely to develop a dementia We don't give that same amount of assistance and care Wow And when we want that for ourselves oh I do I do definitely And I want it for you too Well thank you Yes yes And thank you so much for coming here and being on the Empowering Seniors Program and educating us We so appreciate it Oh I delight it Just delighted and thank you so for what you do And I love it And this is such an important topic And thank you for tuning in If you have questions about this topic or anything else that we cover you can reach out to us directly at 316-686-4500 or email us at Empowering Seniors at KPTSORG Im Katherine Ambrose and I'll see you on the next Empowering Seniors