What is Dementia - Presented by Dr. David B. Reuben | UCLA Alzheimer's and Dementia Care Program

[Music] [Music] good afternoon I think I think we'll get started I'm Dave Rubin I'm a geriatrician and as a geriatrician I care for only older people my oldest patient is almost a hundred and one and my youngest who I call my pediatric patients is in her late 60's oh just a child and if you're going to care for older people as a as a geriatrician you're going to have a lot of patients who have Alzheimer's and other dementias so here at UCLA we're trying to do something very different and I'll explain a little bit more about this towards the end of the talk but we're trying to provide comprehensive coordinated care so it's it's not just about the patient it's not just about the disease it's about the experience of the entire family and in going through this journey so as part of this we're having a lecture series and this is one of a number that we'll be repeating and that will be ongoing with some replacements and some new ones and this is kind of the overview lecture so we're going to talk about what is dementia and delighted that you could come today so it's going to what we're going to cover here is first of all what is dementia and what is not dementia because there's a lot of things that that people think might be dementia but really aren't how do you make the diagnosis and what are the different causes so something that patients sometimes even students frequently asked me is you know is it Alzheimer's disease or is it dementia and we'll talk about those kind of differences and what's the umbrella and what's the underneath the umbrella what are the natural history of and consequences of dementia and then we'll talk about kind of the management of dementia we'll have time for questions so I like to call dementia the gray plague I really yes yes because as we get gray as we get gray we have much more likelihood of getting dementia now everybody has probably heard of some patients who earn their 40s and early 50s and such that have very early onset dementia and those are very rare they do happen and they're very rare and they tend to beeps and tend to be familial but they are they are rare more commonly are the other variety of dementia that are age associated so here we have if you're 65 to 75 years of age dementia is still an uncommon disease it's still quite an uncommon disease as we get older our likelihood of having dementia is is increased so that by the time people are in their 90's virtually half so if you have a couple that's both in their 90's the odds are that one of them will probably have dementia and the other thing that tells us is that none of us this is what I tell the students all the time even the students who are college students is that dementia and Alzheimer's disease in 2012 affects everybody and if it's not you or your loved one it's your parent your spouse your cousin your father your grandparent somebody you know is going to be affected by this disease it's that common right now 5.4 million Americans have Alzheimer's disease which is one kind of dementia and over the next ten to fifteen years that's expected to increase to about 13 million so this is something that's really growing in the numbers of people who have this disease so what is dementia dementia and this is the definition that doctors use for diagnosing dementia this is right out of the textbook and I'm going to explain it to you it's an a a chronic acquired decline in memory and at least one other cognitive function so memory is a part one of the hallmark features of dementia so somebody's a behaving behave bizarrely or this or that and they don't have memory problems it probably isn't dementia the other things they have is aphasia and that's that's difficulty with communication we commonly see this and people have less language or empty speech it will be very fluent and talking with you but if you were to transcribe it there's really not much content or they can't remember simple names we'll get to that in a few moments apraxia that's motor recognition a motor execution and these are things that normal tasks that used to be able to do but they can no longer do agnosia not recognizing things that they would normally recognize as their work I was just reading a book where somebody didn't a patient didn't even recognize her own children and sometimes you see that and then executive function this is synthesis the what we do in our daily lives the tasks that we do in our daily lives require synthesis of data from a lot of different things what we're hearing what we're seeing what we're reading what's going on outside what the environment is like how hot it is and being able to integrate all of that together to complete our tasks and this has to be sufficient to interfere with daily life so it has to get in the way so you can have a lot of these things very mildly if they don't get in the way it's probably not dementia and sometimes I will tell patients and we'll talk about this in just a couple minutes is that you know is a good chance that you may be developing dementia but you don't have dementia yet so things that aren't dementia one is something we call delirium which is also called an acute confusional state and this happens very frequently especially in the hospital not only in the hospital that can happen when people get really sick from other conditions usually in the hospital and it is frequently caused by medications or acute illnesses such as a pneumonia or other kinds of infection and it usually resolves and many cases are probably preventable so let me tell you a little bit more about this let me give you a classic example classic example is the patient gets sick has a bladder infection or pneumonia and you go into the hospital to visit your loved one and they're confused and they're swatting at things and they're picking at things they don't know where they are or after they've had surgery that get very very confused that is what we call delirium delirium is really scary if you've ever seen especially in someone that you love it's a very scary condition but the good news is that delirium generally resolves now those people who develop delirium there's some controversy that might be higher risk of for developing dementia in the future but the delirious case is is something that tends to resolve depression sometimes depression looks a lot like dementia there's a lot of sadness and and people are kind of withdrawn and they may have anxiety and they have poor concentration and they are not thinking very well they just don't seem to be themselves they may complain that they can't focus or they can that their memory isn't good and on the other hand when you do formal testing of them that in fact they do pretty well on the testing and particularly if somebody's orientation is intact they know where they are they know what date it is if they those kinds of things are tip offs now let me just say this is a little bit gets a little complicated is that some time people who have Alzheimer's disease will present with symptoms that look a lot like dementia like depression which you do a lot like depression but depression can look like dementia and not be dementia a third one thing that looks like dementia that is really very important and this is something that there's a lot more literature about now is something called mild cognitive impairment okay mild cognitive impairment patients will frequently complain of memory and when we do testing on them in fact they have memory deficits they have memory deficits but they're not sufficient to impair with their daily function so the interesting thing about mild cognitive impairment and this is kind of a pretty new diagnosis we've just been dealing with it for the past decade or so is that it may or may not represent a transition state for any person to dementia so you go from having normal cognitive function to mild cognitive impairment to dementia three stages there now the tricky thing about mild cognitive impairment is that each year somebody has mild cognitive impairment about 10 to 15 percent of them will progress on to dementia so after about five years about half of progressed and about half haven't so what I'll tell patients and their family is that you know there's something going on here we don't we can't say that it is dementia yet but we're going to have to monitor your pretty closely and see what happens can I tell them frankly that it's about a 50/50 chance that this can progress to dementia it's also important because at present we don't have any any medications for mild cognitive impairment so if you knew you had a 50-50 chance of to progressing you'd like to do something to prevent that and we just don't have anything at this point for that yeah why don't we hold the questions till the end and then what we show plenty of time so the last one that is not dementia is normal aging so normal aging is frequently when the patient is more concerned than the family generally when patients present with dementia a lot of times the patient's families will tell me that they're very concerned if somebody can describe the details of their forgetfulness so for example if you say if a patient comes to me and says you know I'm really worried about my memory and my wife told me to go to the grocery store and she wanted me to buy three things he wanted me to buy a tomato she wanted me to buy bananas she wanted me to buy toilet paper and she wanted me to buy shaving cream and I only remembered three of those that is not that's normal aging that's normal aging and people who have normal aging have intact recent memory for important events so if if there was an earthquake last week or heat spell or something like that that was really important evident every buddy's lips you remember those things but word finding difficulties are part of this tip of the tongue tip of the tongue you know it's on the tip of my tongue I just can't get it out that is normal aging and one way to think about this is that people with normal aging do really well on multiple type of multiple choice questions did you give them 3 or 4 things they'll always get the answer right no problem and I know I'm not that I'm not that old I'm older than I look but when I travel frequently and do and get some jetlag and things like that I have word finding difficulties and normal aging once again with normal aging function is preserved still able to do the things so how do we make the diagnosis the first thing we do is we do some screening tests and this is generally done by the primary care physician sometimes in even at senior centers and these are very simple tests one of the ones we use very commonly is a three item recall so I'm going to ask you to remember three items from a a ball a flag and a tree can you repeat those okay and I'm going to make sure that you've got them so we will make sure that you really register so repeat them again for me okay so I'm going to ask you about them in a few minutes so don't forget them the mini cog exam it does the same thing a three item recall but adds a clock as well and drill being able to draw a clock actually is a very interesting and a very complicated task if you think what it takes to draw a clock a lot of the things that happen when people get demented make it impossible for them to do so so they have to have good visual spatial stuff they have to be able to construct remember that apraxia we were talking about the motor skills and they have to have executive function functioning they have to be able to plan where the numbers go so when you ask people to draw a clock sometimes they they get into trouble because they don't adequately plan where the numbers are go so you'll see 1 2 3 4 5 6 7 8 9 10 11 12 oh we got all this space here with nothing or they Monday I was seeing a patient who probably had some early dementia and she drew a clock for me and had 16 numbers she just kept going so gently in that upper quadrant between 9:00 o'clock and 12 o'clock because of poor planning poor executive function they get into trouble two or three items all right see so no dementia here so that's the three item recall and that is also the mini cog examination another one is called the mini-mental State Examination and that's a 30 item battery that goes through some of these things in greater detail in addition to the memory and in addition to in that case draw drawing Pentagon's it asks for serials taking segue serial 7s 100 minus 7s 93 minus 7 is 86 dot dot and it also has a lot of orientation questions what's the name of this place what floor are we on what city what County what state and these are our screening tests with these do for us as Docs is raise the suspicion that something is wrong here now these tests are actually pretty accurate at saying that there's something wrong but they don't make the diagnosis to make the diagnosis of dementia you have to go on to the next step so the next step is a clinicians examination and that can be from a general internist or geriatrician or a neurologist or psychiatrist who takes does a physical examination a more in-depth mental status examination determines what the functional status etc one of the things as a as a clinician is pretty seasoned at this I would say that about 90% of the time I can make the diagnosis in my office about 90% of time I can tell somebody has dementia or not that other 10% may 10 to 20% there's something called neuropsychological testing which dr. Linda Ercoli who just walked in leads to the neuropsychological program here and what the neuropsychological testing are those kinds of tests we just talked about but instead of being 10 to 15 minutes of testing they're generally several hours and really are very good at detecting where the deficits are and frequently I am these exceptionally valuable as a clinician because they tell people what they can do and what they can't do because of their deficits so they tend to be very valuable in establishing the diagnosis and determining where the deficits are we also do some blood tests and some imaging tests to exclude medical conditions that might be contributing so things like low thyroid sometimes vitamin deficiencies can be contributors to cognitive impairment they're not causes of dementia per se but they can be things that look like dementia and finally imaging so imaging we're talking about certain kinds of x-ray tests and it turns out that if I was giving this talk decade ago would be very simple we didn't have much in the way of imaging but now we have CT scans and we have MRI scans and we have PET scans and we have SPECT scans we have all these different kinds of tests and they all do a little bit differently and depending upon kind of what the suspicion is for the type of dementia those tests are generally done so they're done for two reasons one reason is to exclude things that can cause picture that looks like dementia so for example sometimes you'll have and it's rare a tumor that can cause it can cause symptoms that look like depression or something called normal pressure hydrocephalus which is a rare condition but can cause symptoms that look like dementia the other tests some of the more recent tests like the PET scanner can actually tell you where where the problem is and frequently people feel pretty comfortable making the diagnosis of Alzheimer's disease depending upon where these PET scans light up now with these these imaging studies the advanced imaging studies such as the PET scanners there are certain criteria under which Medicare will cover them and certain ones that they won't so you have to talk with your doctor about that but the other ones the MRI tests and the other tests are mostly covered by Medicare so what are the causes of dementia so what I tell patients is the the big umbrella is dementia so and that's that definition we talked about earlier that acquired progressive deficit of memory and other cognitive functions the most common is Alzheimer's disease and it's estimated that sixty to eighty percent is Alzheimer's disease and the second most common is vascular dementia and by vascular dementia it's really a very complicated number of conditions so vascular dementia can be one or more large strokes that people have or sometimes they're very many many many very small strokes we all think about strokes as living in weakness or slurred speech of those kinds of things but in fact the very small strokes that you have may not show any of those motor problems but may just affect memory there are a feature called dementia with condition called dementia with Lewy bodies and that is closely related and may or may not be the same disorder or ends of a spectrum of Parkinson's disease with dementia and this these are each of these dimensions have a little bit of a different flavor to them with dementia with Lewy bodies people tend to have fluctuating mental status they tend to have very prominent visual associations with it so for example a lot of my patients who have this disease will complain of seeing red men or blue men and they're not necessarily scary they would they will have these kind of visual types of disturbances these also tend to be very sensitive to certain medications that do not agree with these misdiagnosis frontal temporal dementia is another kind of dementia that presents a little differently it doesn't have quite so much memory problem although there are have to be memory problems but the big issue here tends to be changes in personality people tend to be very aggressive or in contrast sometimes people who are develop this disease become much more passive I had a patient a number of years ago was a very very sad case of a woman who had frontal temporal dementia and she was she just didn't she was very withdrawn didn't speak a lot and and I talked to her daughter and I said well you know this is just a terrible disease but one of the things that that if there's any consolation that your mom is very sweet she's not aggressive and it's at that and the woman burst out in tears you just started crying she said my mother was never sweet she said yeah so this change in personality toxic metabolic disorders those are generally not dimensions per se although they occasionally can be and they tend to be some of the rarer dementia and other movement disorders those are generally with Parkinson's disease now if you add these up guess what they're more than 100 percent and the reason why they're more than 100 percent is that sometimes these different-colored causes of dementia more than one can occur in the same person and in particular vascular dementia and Alzheimer's disease frequently occur in the same patient so we have a name for this we call it mixed dementia so let's talk about Alzheimer's disease because it's the most common and things that increase the risk of developing Alzheimer's diseases we said earlier the older you are the more likely your chances are of developing this disease family history so family history this is something that comes up all the time in my practice is that a patient develops Alzheimer's disease and has a terrible course with it and the family members will say cheesed the children particularly it's just what's going to happen to me and in fact the family history of Alzheimer's disease is not all that strong unless it's early onset Alzheimer's disease if somebody develops Alzheimer's disease in their 40s or early 50s you know then you tend to see that really strong family history but the fact there it is a familial but it's not that strong in in older people there is a gene called apoe4 that's not commercially available it's done mostly in research that gives you it puts people at a higher risk people who develop depression in late life are at higher risk and this is really very interesting because that depression that they develop in late life may in fact be early Alzheimer's disease let me give you an example the person is a neighbor of mine who I saw was referred to me because of a of a positive PET scan she was in a research study she had a positive PET scan that it showed that she had Alzheimer's disease and I examined her and this was very very very early Alzheimer's disease and for my examination and I was putting on my best examination she looked like she had depression and I couldn't detect any cognitive impairment so that those patients may actually have early Alzheimer's disease some factors that reduce risk if you have this gene profile of a po2 is reduces your risk Mediterranean diet and higher physical activity lead to reduced risk there haven't been strong studies saying that if you actually intervene and put people on Mediterranean diets or get them to exercise it would prevent the development but in large studies looking at populations these are less likely so this is a very very very simple slide to try to explain least one of the leading hypothesis of losing the theories about why people develop Alzheimer's disease let me just say and I was reading about this in boning up for this talk today is that there are a lot of different theories about why people develop Alzheimer's disease and there's still a fair amount of uncertainty in fact there's a lot of uncertainty but one of the theories is that this is a protein here which is called the a P P or they call amyloid precursor protein that all of us have and this an led precursor protein for some reason or another gets snipped and get snipped and a piece get cut out and get snipped right there and then begins to accumulate and that accumulates as what they call amyloid plaques and those amyloid plaques build up and can cause a couple of things that can call it to cell death or it can get into it interfere with the process of neurotransmission so the way our brains work all of our brains work is chemicals and one of the chemicals that is really very important is something called acetylcholine it's a neurotransmitter it's it's like the electricity that goes into the brain it's one of many and that is one of the ways in which we treat dementia is with drugs that try to increase acetylcholine so the consequences of these beta-amyloid accumulation are something called neurofibrillary tangles and here instead of having nice clean cells that one cell touches the other cell what you get is kind of the scarring kind of picture with tangles in it they look like almost like a spiderweb and the cells stop talking to each other and with the loss of neurotransmitter as I mentioned and sometimes in this disease or one of the other ways we're treating it is that the wrong transmitter which is called glutamate causes further injury to cells now let me just say that these are only a couple of ways in which cells are damaged and and some of the ways in which the pathology of Alzheimer's disease and the reason why I mention these two in particular is because the current treatments are for the most part aimed at these correcting these deficits but I'll also say that there are other theories there are other theories and there are some problems with these theories so from a clinical perspective the kinds of things that we see with patients with Alzheimer's disease is loss of memory that is the hallmark of this disease loss of language and one of the things I frequently will do is something called an animal naming test animal naming test goes like this I said I'm going to send you to the zoo or a farm or jungle and I just want you to start naming animals let's start naming them so they'll say you know a dog a cow Raph an elephant pig and you know normally if somebody going to identify about 18 animals in a minute that's pretty pretty much normal once you get below 10 it's pretty clearly abnormal and what you tend to see with patients with Alzheimer's disease is they tend to recycle these animals so they'll say a dog cow fish an elephant cow a dog because they don't have that language they've lost the language visuospatial we've already done this when we talked about the clock or the intersecting Pentagon's one thing to mention and this is where neuropsychological testing really comes into play is that many of our patients at least many of my patients are people who are very highly educated a number of years ago I had a patient who was a college president so this person's IQ was exceptionally high and did very well in some of these basic questions so would you have to dial it up and there's with the drawing stuff you can get very very complicated there's some very difficult tasks higher level the executive functioning types of tasks remember we talked about the planning of the clock but another one is out simply I asked people I'm going to send you to the grocery store I'm going to ask you to make change for me once you buy some bread for me bread 75 cents a loaf I want you to buy two loaves from it's I'm going to give you two dollars how much change you get back okay I'm a simple grocery store would you have to manipulate information to be able to do that and finally we talked about apathy apathy is incredibly important in Alzheimer's disease it's not Universal but many times you'll you'll see this kind of apathy so last year the Alzheimer's Association with the federal government we defined how we think about Alzheimer's disease and put it into three categories preclinical so this is it's felt and there's some pretty interesting data particularly from a study that was done I think in Iceland where they took a look at people who had very early onset dementia that was kind of familial people and that they could find some changes in the biochemistry and the chemicals there and sometimes in the structure you know decades beforehand decades for him so that there is a period of time when people are functioning very very well they don't even have mild cognitive impairment and the feeling is that some of the underlying changes in the chemicals of the brain and in the structure of the brain have already been occurring the second level is MCI we talked about mild cognitive impairment and these are people who have demonstrable physical findings memory findings but has not impaired yet with function and the third level is people who have full-blown Alzheimer's disease now the trend now is towards identifying biomarkers and biomarkers can help in the preclinical stages to see if we can get earlier treatment to prevent this disease and this is mostly in clinical studies and trials it's not ready for clinical usage and an MCI these biomarkers may say that remember we said 5050 might be able to help identify which 50% are going to progress to really having Alzheimer's disease in which 50% are not going to progress and then for those people who have what looks like Alzheimer's disease that the biomarkers may be helpful in saying jeez no this is in Alzheimer's disease it's something else so that's that's where the field is going so what happens here with Alzheimer's disease the first is the disease progress the Dedes universally progress and it progresses on the mini-mental State Examination on the average of about three to four points per year that's a 30 item scale so over about a 10 year period this is pretty common over about a ten year period you go from being where you were to really having essentially no cognitive function essentially no concrete function now let me just say this is incredibly variable I've had patients who have declined very rapidly over a year to two years with Alzheimer's disease and I've had patients 1516 years down the road and and their disease has not progressed but thinking about it is kind of an 8 to 10 year horizon so this is a long-haul disease this is the long course disease and we're going to talk about that in a few moments now that's that's one of the devastating components so the other are the the other symptoms that are associated with this and by psychotic symptoms sometimes these can be hallucinations or or marked disorientation or seeing things that experience things that other people don't it's in the minority but occasionally we do see that depressive symptoms are quite common and agitation or aggression this is something that's almost almost universal at some time where people will get agitated they'll also get very suspicious some of the kinds of things that you tend to hear about fact the two most common are that people are stealing from them people accuse people of stealing especially caregivers and sometimes the caregivers are stealing but most of the time it's it's the disease and the other is infidelity so you know you have this this person who is dementia and the caregivers it's very frail older person and she says there she is she's running all around on me and that's that's just a very common non cognitive behavioral symptom survival's about 9 to 12 years and Alzheimer's disease of the other diseases of different causes tends to have the best survival because the other ones are generally associated with other problems for example vascular dementia those people have bad blood vessels not only in the brain but in the heart and you know vessels of the legs and people who have Lewy body dementia or dementia with Parkinson's disease generally the Parkinson's disease is the thing that really gets them into bigger trouble so management falls into two categories first is managing the disease and the second is managing the patient and both are important both are important managing the disease will talk about the cholinesterase inhibitors and memantine those are the only two classes of drugs that are available right now other than clinical trials and we'll talk a lot about managing the patient and that's managing the other diseases they have caregiver support which is probably the most important thing I'm going to talk about some behavioral therapies and pharmacological management of complications we have to mention that at least briefly although it's not our top choice and then something that's exceptionally important is advanced planning managing the disease colon ester ACE inhibitors there are three out on the market now aricept razza Dean and exelon are the the trade names and the generic names are there in regular font they not only benefit Alzheimer's disease they have some effect in Lewy body dementia whether they're effective in vascular dementia is still pretty controversial but many of the patients with vascular dementia have mixed dementia and they seem to be helpful in dementia Parkinson's disease but as I alluded to earlier and this is really important is that these drugs do not prevent the progression of mild cognitive impairment to to Alzheimer's disease that's been studied a number of times now and they just don't work at that level now these drugs are not home run drugs they just aren't home run drugs and way I like to tell my patients and their families is that if this is the slope of the decline of patients with Alzheimer's disease what these drugs may do is to slow the slope instead of being quite so rapid it's it takes longer about 50% of patients it tends to work in terms of slowing progression and about 10 to 25% and I've seen this a few times and sometimes it's really valuable patients actually improve on these drugs those people are quite lucky and then conversely about another quarter or so there's no response to them whatsoever they just don't help at all there's some evidence that suggests that some of the behavioral symptoms may improve that's not quite as consistent to the other data and some people decline rapidly when the when the drug is discontinued and that's sometimes how we find out that the drug that's been working is that it doesn't seem to be working it doesn't seem to be working as we give it a trial off the drug and you find the patient declines pretty dramatically start the drug back memantine in contrast to the cholinesterase inhibitors is really reserved only for people who have pretty severe dementia it's not really for early dementia and it works differently the acetylcholine the cholinesterase drugs cause more acetylcholine that's that neurotransmitter that got depleted what memantine does it's very interesting it protects brain cells from damage from glutamate as that other transmitter that that can be toxic what this does is slows the rate of cognitive and functional decline and frequently it will improve behavioral symptoms that tends to be a little bit more of its niche but not entirely 100% the FDA approves this only for moderate to severe Alzheimer's disease whereas the cholinesterase inhibitors improve approved for mild moderate and severe now what happens if you add the two and here the data are pretty controversial some studies have shown better outcomes than either one alone but some more recent studies have shown that the addition of the memantine to the cholinesterase inhibitor may not have that much benefit as a clinician I'm willing to try both and see if it helps in late stage dementia but at some point for all of these drugs that reaches the point when people are very very late in their disease we don't think it's benefiting them that much it's time to do a trial off the medicine so these are things that don't work these are things that have been thought of and got some headlines in the New York Times and such and when you trust them further they don't do so well so none of the vitamins b6 b12 vitamin E or folate none of they've all been tried and none of them have worked very well ginkgo there was a lot of press about this about a decade ago and when they first study showed a lot of benefit and then tried to repeat that replicated findings couldn't do it none of the hormones testosterone estrogen they originally thought was going to help cognition and now they think it may actually make it worse the statins these are the drugs like lipitor that we take frequently for high cholesterol and heart disease prevention they thought that they might work for for Alzheimer's disease prevention not so aspirin and other drugs like aspirin ibuprofen motrin advil those kinds of things do not prevent Alzheimer's disease or treat it and finally vaccines and there's been some interesting studies with vaccines initially that were quite promising in mice and then when they did them in in humans a couple of things happen one these were very early studies so not a whole lot of people but they found that some of the the changes the biochemical changes that you would see in some of the debris that's collected in the brain of Alzheimer's disease less so it actually did would have supposed to do these vaccines however the cognition didn't change so it fixed the the in the pathway but it didn't fix the memory problem and then there were some complications so it never made it to primetime it never was released there's still work going on with vaccines and maybe something we'll see in the next decade or so so the rest of the stuff is managing the patient and this is a lifelong disease this is not like having a disease that's going to last week month year generally this is a long-haul disease and I like to tell patients and families you play the ball where it lies okay and what I mean by this is if it's early in the disease I like to get the patient involved making helping making decisions if it's late in the disease then we have to work and and and decide what the patient others have to help decide what the patient would want we always aim for the highest level of Independence that works for everyone and my strong belief is that Alzheimer's is not a disease of the patient Alzheimer's and dementia Alzheimer's disease and dementia are diseases of the family because everybody is in this and it's got to work for everyone it's got to work for everyone because if the caregivers get burned out it doesn't really help the patients it just doesn't managing hot-button items such as driving this is something that as a physician I'm required to report patients who have dementia and are driving I've had some patients at my throat actually with our hands around my neck threatening me because I was going to report them and I just I just say you know this is my job as a doctor I have to do this managing other diseases and then managing the symptoms we'll talk about that in just a moment caregivers caregivers are the most important resource that a demented patient has much more important than certainly than the doctors over 50% of caregivers develop depression this is a tough disease and that's why I say it's not only the patient it's the patient and the families the more knowledgeable and more empowered the caregiver is the better care the patient will receive and there are specific caregiver training programs offered by the Alzheimer's Association and other community partners that we can help steer people to in fact we're going to be offering one here at UCLA getting next month yeah and the carrier there are many caregiver resources that are available through the Alzheimer's Association other community resources we here at UCLA have a beyond Alzheimer's support groups that meet here in Westwood on Monday evenings and in Santa Monica on Thursday evenings and these are free of charge and Linda leads co-leads one of them and Patti Davis President Reagan's daughter co-leads them at both both locations they are free of charge managing behavioral and psychological complications this is the agitation the aggression the paranoia those kinds of things and our preference is to do that with the behavioral approaches identifying what the behavior is and how to respond to it so people keep asking the same questions over and over again you get in here you're getting annoyed because they don't listen they don't seem to listen how do you deal with that if people are wandering how you deal with that those they're getting aggressive if you're trying to bathe the person and they start scratching at you and stuff like how to deal that the answer is generally not medicine occasionally we will need medicines sometimes depression antidepressants it turns out that the antidepressants don't work as well in patients with dementia as they do in patients without dementia they may help with some symptoms such as problems with sleep or problems with appetite but they don't work quite as well and then there's a whole class of drugs called antipsychotics and respiratory typing olanzapine are the generic names but you may have heard them as seroquel or psych Rexha or respiratory that are out there and the bottom line is they're not very effective in big studies when you compare people they tend not to be very effective and they also have the potential for side effects they can cause increased risk of dying from either stroke or heart attack about three or four percent higher risk they can cause issues of some other cardiac conduction problems but that said that said for some patients there is some benefit and I'll have to just tell you that I've had some patients that a small dose of one of these medicines means that the patient is in firing the caregivers it means that the person can still stay at home so we use these judiciously we try not to use them as much as possible but in some cases they're helpful advanced planning so if the dementia is early or if it's mild cognitive impairment we always try to get the patient involved in the decision-making the first thing is very important is to establish a surrogate so if the person's disease progresses and they're no longer able to make decisions for themselves who do they want to make those decisions to identify that person because as we all know sometimes you've got a big family not everybody in the family sees things the same way so the person needs to identify who the right person to speak to beginning financial planning early and anticipating long term care needs once again you're talking about a disease that on average is you know eight to ten years and if you're going to need caregivers how long is how long are you going to have those kind of resources or do you have those kind of resources one of my patients who has vascular dementia with a lot of complications she's just been really difficult to manage her she has 24-hour caregivers and she's going to a day care program and all of this and her son says I've got I got four years this that's how much I can afford four years of this kind of care and then we're gonna have to think about something different so that kind of planning ahead is really important a couple of milestones these are milestones I tell my patients families is these are these are things when bridges have been crossed that are telling you that things are closer to the end the first is when they stop walking when somebody stops walking who has Alzheimer's disease or another dementia you realize it's probably getting pretty close to the end and when they stop eating then it tends to be very close to the end we and our practice do not offer g-tubes you know feeding tubes for people with dementia most of the data and it's not perfect studies but the data seems to suggest that that doesn't improve the quality of life and doesn't prolong the life for very long either so we just don't don't offer them there are some hope on the horizon there are a variety of different treatments and prevention strategies in the pipeline the optimal care is probably going to be multimodal some medications a lot of behavioral stuff and it's likely to be there's some false starts and some unfulfilled promises there have been a number of very promising drugs that have been tested and they've gotten to these clinical trials and thus far they've pretty much all bombed out every summer around July or the National Alzheimer's international Alzheimer's disease meetings and it always hits the news about the drugs that just aren't going to make it so I just want to spend the last couple of minutes and I know only have a few minutes talking about a new program we've done at UCLA and this is the UCLA Alzheimer's and dementia care program and it works with primary care physicians to care for dementia of patients and their families it starts out with an in-person 90-minute to essentially assessment of what the needs for that individual patient is and what the resources because everyone patients with Alzheimer's disease are like snowflakes everyone is different everyone is different and then developing and implementing individualized dementia care plans and monitoring response in progress so it's a custom-made for that person and that family in that situation to try to get the best outcomes and that is actually provided to the primary care physician who has input into it and approves the plan it also gives 24-hour 7-day a week 365 days a year access for problems and assistance and advice but it doesn't take over the care of the patient you stay with your primary care doctor what patients get from this program and families counseling and education linkage to UCLA programs such as support groups and education linkage to community based services we have five partners in the community Alzheimer's Association oh pica wise and healthy aging Lisa's place and Jewish Family Services or our community-based partners and all the patients have ongoing follow-up and intervals depending upon the care plan most commonly our dementia care manager who's a nurse practitioner will get in touch with people a week or two weeks afterwards say did you have any problems implementing this plan how can we help you how are things going to develop that relationship to be a part of this program first people have to have dementia diagnosis they have to be a UCLA patient this is something that's offered by UCLA for and not in a nursing home we've one of the goals of this program is to prevent people from going into a nursing home some components such as the support groups it's such like that are open to anyone but for this program the idea is it can be an assisted living or at home but that's where we want to try to prevent them from having me institutionalized they need to be referred by a physician and this is a referral number three zero three one nine three two two and our dementia care managers a nurse practitioner named Leslie Everson that's her phone number as well as well as her email address we have high hopes for this program this program is being offered at no additional cost other than what medicare covers we've gotten some support from the federal government and including a large grant we've had a number of our patients who have been philanthropic people who have had this family members with these diseases and say they want to give back and most of the program or a good bit of the program is actually supported by donations so we are offering all these services at no charge to patients so in conclusion the dementia is an epidemic particularly among the oldest old many diseases have symptoms of dementia but are not dementia so we have to know that you're dealing with this diagnosis history-taking and the mental status examinations are still critical at elements and diagnostic testing is important but generally doesn't give us many surprises physicians can do a lot more for dimension than we could decade ago but the drugs to to prevent the disease progressing and treating complications are really somewhat limited behavioral management and caregiver support are essential and those are the key components of managing these disorders and the the rescue the the Hail Mary the things that are going to cure this disease are still a long way off so we have to play the ball where we lie where it lies right in 2000 well so I'm going to stop here and I'd love to answer questions I know that some came in people running down notes and so it's like that but now's a good time to answer questions and I don't want this talk to be pessimistic it's not supposed to be what it is is kind of a getting everybody on the same page talk with the idea is this is what we've got to do this is the task Atlanta hand and we need to approach it so you had a question earlier on yeah your person have been seen by a geriatrician neuro psychiatrist all the ones that you mentioned a to get an accurate diagnosis in going yeah so at this point this is one of the things about the UCLA Alzheimer's and dementia care program is that many of the components in fact reps most of the components that we're the primary care physician may have some lack of expertise this is kind of a wrap around to make sure those are so I don't I'm not sure that you need to see a geriatrician or a geriatric psychiatrist if you have if you're involved in that program yeah yeah oh she can't access UCLA yeah so in those cases somebody's outside of UCLA typically I would if a geriatrician is available geriatricians this is kind of our bread and butter you know we just do a lot of this kind of stuff I would say 30 to 40 percent of my patients have dementia something I see every day most primary care physicians you know it's ten percent of their elderly practice or less it's very very uncommon sometimes neurologists are very good at managing this and sometimes psychiatrists are very good at managing it and the other thing is there's a lot of good community resources Alzheimer's Association has chapters versus virtually everywhere and that's also a very good place to start because much of this is really about about caregiving and behavioral treatments yeah what is your feeling about they really don't Stu no yeah yeah and that sometimes you know they're there no fixed rules there are no fixed rules I have patients who don't know their diagnosis and and even if they did they probably wouldn't retain it for very long but if it's going to be something that's going to to irritate people aggravate them exacerbate these symptoms it's probably not it's not really worth it yeah yeah yeah and sometimes it really is a case-by-case basis he knows that there's something going on uh and that you know that's something we can live with yeah there's there's no need to you know put a Scarlet Letter on their chest saying Alzheimer's disease yeah yeah yeah so that once again that tends to be on a case-by-case basis and generally most of the primary care physicians are pretty good about knowing when to bring in the consultants and you know I get my hand slapped by probably some of my partners and colleagues but I'm a firm believer in in patient empowerment and by patient empowerment I mean not only patients but also of their family members and proxies is if you think something's not not right you know it bring it up bring up your head up to you you know maybe maybe this person lrc a neurologist maybe this person ought to see a gyrators and maybe this person ought to see a psychiatrist and you know sometimes as a physician I say you know that's a--that's a pretty good idea I didn't think of that or I might say you know I just don't think they're going to add that much but it's it's it's incumbent upon you if you're concerned to bring it up an example persons doing fine and then someone passes away yeah and we see this a lot I mean I've seen it actually even when someone loses the pet yeah it's like it's like a person and you know many times what we'll do in those kind of cases is will based on the change and what that person was like now we might say we might treat empirically now that might get them and started on either kind of a counseling session even though they're not asking for it but you've seen these kinds of changes yeah other yeah yeah someone sent me a clip yeah regarding coconut oil and Alzheimer's yeah I know about this I know about this and we have seen many many things like this insulin there's did you guys reading about the insulin I mean there's you know they're almost anything and there's a reason for this there's a reason for this is because we are seeking we saying as a society or seeking a panacea we want to pull something out of the air that says cheese we were missing it all along and it was coconut oil that's going to prevent this or going to fix it and the problem with those kinds of things is they get tested sometimes a fair amount of money gets put into them and they tend not to work it's it tends to be it's a more complicated safety test my understanding was there have not been any tests that they're studying ketones esters for Parkinson's yeah there were no NIH studies regarding ketones esters for Alzheimer's patients no there aren't alright and yeah there will be if it generally makes the the headlines in the newspaper somebody gets a study to study it and the tradition the history has been that these tend to make a lot of newsprint get tested and then go by the wayside ginkgo biloba was the classic example now they have Maxo know which is yeah Exxon is another one yeah farm it's answer to the over-the-counter version exactly curcumin those are in test right now so you all of these things are kind of the great white hope but you know we're dealing with the disease right now with our patients and our family members and those things that they happen you know eight or ten years down the line it takes a good five to six years to even find out whether these things work or not so yeah maybe you know there's always room for hope this is Pandora's box there's always room for hope but in while we're waiting for the hope do we need it we need to do our homework we need to get involved and work on this disease and it's it's the people in this room it's the caregivers who really need to get energized with this yeah [Music] yeah yeah yeah yeah yeah yeah so there's two questions one is about you know did something earlier happen that caused this and and the answer is yeah sometimes that happens sometimes and and there's this really if it's something that happened that it was a heart-lung machine if it was somebody who's a boxer earlier in their life or you know there are things that happen and you know that those are the that's our cross to bear and there's no we can't go back in time and change any of that yeah yeah yes yeah yeah yeah yeah and it it really is on a case-by-case basis and sometimes what the best approach is similar to how we treat mild cognitive impairment and say you know at this point we can't say too much but the most important thing is not to not to forget about this is to come back in a year and see what's happened and frequently when I refer to dr. Kelly's group and get neuropsychological testing they say geez we can't establish the diagnosis of dementia at this point but let's have the patient retested in another year and the important thing is not to forget about it is is them as to monitor it the other thing we don't want to do is to call things too early because you know otherwise you're just giving people medicines that aren't going to help them yeah generally the killing these drugs are tolerated pretty well there they're not they're not real bad drugs but they're but people do get complications of them side effects some of the ones that are mostly gia many of them are GI the constipation or diarrhea sometimes they get nightmares and bad dreams and sometimes it can also rarely cause slowing of the heart frequently what will happen is when we start people we also have people on a low dose of them and after about a month we increase it and when we go up to the higher dose they can't tolerate the higher dose and then we can go back to a lower dose and they're able to tolerate it and occasionally we can switch from one of these anti-cult cholinesterase inhibitors to a different one and have a less of a side effect profile yeah if they came along and said to take one of those drugs my concern is it creating more trouble yeah well it's a really good question it's a really good question and in England England they've been slower to adopt these medicines they're a little more suspicious this is Big Pharma just trying to make money and in fact there was just a recent study the past couple of months that I thought was very very interesting where they stopped these drugs and they saw what happened these people and the people who were on the cholinesterase and evers who stopped the drugs they declined though they actually really did decline so I think I think the drugs by and large if you take that caveat that about half it slows the disease maybe 10 or 25 percent increases cognition the other quarter it doesn't really do anything but they probably are worth the benefit you know worth and what we do and I do this in my practice all the time is that that people aren't tolerating the drugs we stopped them yeah if you don't want the disease you want the Cure to be worse than the disease [Music] yeah so so so yeah so the answer is I generally follow the FDA's guidelines and I do not treat unless somebody has a diagnosis of dementia so if it's mild cognitive impairment I don't treat there are some physicians who do I don't think they have much ground to stand on and if it's mild or moderate I don't use memantine I don't use an amend I just use a cholinesterase inhibitors and if they don't tolerate them I stop them yeah and some don't some just don't spell rate them how long does it take for this good question that's really a good question because what happens is that in most cases it just slows that slope so they are declining still but the rate of decline is is less most people will say three to six months and generally you expect on some of these tests a certain amount of natural history decline and if the decline is less than that I tend to keep them on it yeah but it's it's it's a it's a judgement call it really is a judgment call so we expect to decline to be like this and if it's less than that if the client is only like this I tend to keep them on the drug yeah last question yeah that's that's a really good question yeah so earliest stage milestones are kind of the milestones that that lead us to really making the diagnosis of dementia is is if they are not functioning well in their current lifestyle one things I always ask about is is driving near misses accidents those kinds of things now I have to report either way but I generally if it's mild dementia what happens is that people can actually go to the DMV get retested and keep their licenses but if they're having near misses and stuff like that I generally tell them they've earned the right to not drive yeah well thank you guys so much and it was so hollow genetic about it you know this is so hard to find and the parking and such but but you guys were great and good luck with it and if you folks are being cared for by UCLA or loved ones in care but the Alzheimer's in dementia care program we have up any flyers I think on that here too the package oh yeah grab grab a packet and we will do our best to try to help your loved ones and help you folks thank you so much thank you [Music] you

Channel: UCLA Health

Views: 157,877

Keywords: healthcare, 9192012, reuben

Id: wyO1qQwRHVY

Length: 71min 33sec (4293 seconds)

Published: Fri Feb 22 2013