Less Common Dementias: Chat Transcript February 8, 2001

Alzheimer’s Answers
"Less Common Dementias: Understanding the Differences to Improve Care."
Dr. Lawrence Honig, M.D., Ph.d., from Columbia University’s Taub Institute
February 8, 2001

This Chat Room provides general information that is for educational purposes only and should not be considered as offering medical advice. The information that is made available by this Chat Room should not be used for diagnosing or treating a medical or other health condition. Viewers and participants should always consult a physician or other qualified healthcare provider for the diagnosis or treatment of any medical or health condition. ElderCare Online, Columbia University and the hosts MAKE NO WARRANTIES, EXPRESS OR IMPLIED, AS TO THE VALUE, USEFULNESS, COMPLETENESS OR ACCURACY OF ANY OF THE INFORMATION THAT IS MADE AVAILABLE BY THIS CHAT ROOM.

RichOBoyle> welcome to Alzheimer’s Answers. Our Discussion Leader is Dr. Lawrence Honig from Columbia University. Today’s topic is "Less Common Dementias: Understanding the Differences to Improve Care."

>> lhonig has joined channel #XC.1993632

RichOBoyle> welcome Dr. Honig

RichOBoyle> I expect that people will join throughout the course of the 1-hour session

RichOBoyle> I will ask them to queue up if it gets too chaotic

[lhonig] Thank you Mr. O'Boyle. I am delighted to be here in the chat room.

RichOBoyle> I will also intersperse the advance email questions and my own follow-ups

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RichOBoyle> tmgw has the first question...I will repost it because it is a little long

RichOBoyle> My husband is 54, was diagnosed in 1997 with Pick's. He has to be fed, toileted, dressed, and put to bed. He does not talk at all, hasn’t for over a year, except for just a word occasionally. He has terrible fears, like he is seeing things when you try to put him to bed, etc. He is on Depakote and Seroquel only. He walks a lot, constantly pacing. He makes motions to himself in mirrors, etc. What stage do you think he is in?

RichOBoyle> welcome butterfly!

[lhonig] Unfortunately, this likely represents a fairly advanced stage of the disease. We would call this "severe".

[tmgw] What are the next stages I can expect, and probable duration of his disease?

[lhonig] Even though he has only been diagnosed for about 3 years, the fact that speech has been entirely lost, would put the case into the severe category.

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RichOBoyle> Welcome nblackbra...please hold your question until contacted by me

[lhonig] The next stages are difficult to predict with certainty. But unfortunately, it is possible that there might be increased difficulty with walking, and with interacting with others.

RichOBoyle> Do the stages of Pick's progress in a fairly predictable stages (like Alzheimer’s Disease), or can they progress differently?

[lhonig] Duration is even a harder question, as it is very variable. Your physician can best give you any clues, based on serial examinations.

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[lhonig] Regretfully, Pick's disease, like AD, affects different persons differently, so while we can create rating scales, the progression through stages is not necessarily in a uniform manner or at a "standard" pace.

[tmgw] He is 6'4", weighs about 230, and physically healthy. Would this good physical condition not prolong his life, even though he is so demented?

RichOBoyle> In general what are the stages of Pick's disease?

[lhonig] Again, there is great variability. However, in general, language and behavior are affected early on. Memory functions also become increasingly affected. And, then in the later stages of disease spatial navigation, drawing abilities and such may be also affected. However, this does vary person-to person.

RichOBoyle> tmgw...we will return to you after others have had a chance to pose their questions, thank you!

RichOBoyle> I hear about new drugs and research for Alzheimer's Disease. Are these developments applicable to other dementias such as Pick’s and Lewy Body? Is there specific research going into these rarer dementias?

[lhonig] Since many cases of Lewy Body dementia (LBD) have concomitant Alzheimer pathology, it is hoped that drugs being developed for Alzheimer’s disease, may work for LBD also, if they work for Alzheimer's. With regard to Pick's disease, or what we now term "frontotemporal dementia", there is active research in trying to understand the nature of these type of disorder. Research into specific drugs is lagging behind that for Alzheimer’s, but it is likely that these will also come.

RichOBoyle> How about herbal treatments (ginkgo) and vitamins (E) which are increasingly used for those with AD. Are these appropriate for non-AD dementias?

[lhonig] Gingko has been touted as useful for memory in general, even in folks without memory problems! However, there is not good data to support Gingko's efficacy. With regard to vitamin E, there is theoretical work that would support it's use in a variety of neuro-degenerative conditions.

However, only in AD is there some evidence of efficacy, to date (New England Journal of Medicine article by M. Sano et al.) NEXT

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RichOBoyle> nblackbra is up now

RichOBoyle> welcome Marsha

[nblackabra] Dr. Honig: My 83 yr. old mother had a stroke in October. She was an avid reader, now has trouble comprehending. Her attention span is minimal. She was an avid reader & now simply holds the paper in her lap; she also gets "stuck" on words. Will any of this come back to her? Should I give her children's books such as Goosebumps?

[lhonig] In general, there is often significant recovery from strokes. However, usually this recovery occurs most in the months following the stroke. So, unfortunately, it may be that she will be left with considerable deficits, although one should not be without hope.

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RichOBoyle> welcome sac!

[lhonig] Giving her picture books, or simplified "children's books" is fine, if she seems to enjoy them. NEXT

[MARSHA1937] My husband has been diagnosed with Alzheimer’s Disease, but has FLD symptoms. How often does this occur?

[lhonig] Sometimes, it is difficult to differentiate between AD and FLD, by clinical history and examination. Thus, it is not uncommon for persons to be first diagnosed with one of these disorders, and later thought to really suffer from the other.

[MARSHA1937] His sister just died with a diagnosis of Alzheimer’s Disease, but who knows.

[lhonig] Only pathological examination by biopsy (in some cases) or autopsy makes the diagnosis certain.

[MARSHA1937] And I will get an autopsy when the time comes.

RichOBoyle> A question about prescription drug use by an FLD patient: an FLD patient taking Aricept. Is it advisable to take the med, perhaps because the real condition may be AD?

[lhonig] If there is a question of possible AD, it is not unreasonable to give a trial of therapy with Aricept. Furthermore, regarding cholinesterase inhibitors and FLD itself. It is certainly possible that FTD symptoms might respond to Aricept and related medications, although this is unproven.

[lhonig] The fact that his sister died of AD might increase the odds of his illness being AD, if their illnesses (symptoms, onset age, etc.) were similar.

[nblackabra] My mother's stroke also left her with small seizures for which I give her Depakote.. She seems to not be experiencing them now, but I'm wondering why they occur after a stroke?

[sac0816] Exelon, tell me more!

[lhonig] Marsha1937: Finally, many investigators recognize a "frontal variant" of AD, which has symptoms and clinical elements in common with FLD, but pathologically is AD.

[MARSHA1937] Sister's onset at about 75 and his was at about 58, so big difference.

[MARSHA1937] Do you think we are going to find that these dementias all overlap when we know more about them?

[lhonig] MARSHA1937: Yes that is a big difference in age, which increases the likelihood these are different disorders in brother and sister.

[margie1314] Exelon is the same family of drug as Aricept. People seem to tolerate both equally well. The drawback of Exelon, IMHO, is that it is to be taken twice a day, rather than once.

[lhonig] nblackabra: Yes, seizures often occur after strokes. This is because injured brain has electrical irritability. NEXT.

[lhonig] sac: Exelon is a cholinesterase inhibitor like Aricept. There are a number of differences in their molecular structure, half-life, dosage interval and form. However, Exelon and Aricept both have proven efficacy in AD. NEXT.

[sac0816] Does Exelon show any results within a few days of use? My mother was put on it last week, and Dad thinks she is doing better--more socializing already.

[lhonig] sac0816: Exelon may show results within a few days of starting, but this is uncommon, because the drug is started at low doses, which typically by themselves are not efficacious. Upon dosage escalation, as prescribed by your physician, the effective dose ranges to alleviate symptoms are reached. NEXT

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RichOBoyle> welcome alicejeanne!

RichOBoyle> How many less common dementias have been identified? What steps are used to identify the various different types?

[lhonig] As might be expected from the term "less common dementias", there are a large number of such conditions. Alzheimer’s disease is the most common dementia of the elderly, but Frontotemporal Dementia, Dementia with Lewy Bodies (if viewed separately from Alzheimer's disease), dementia of Parkinson's Disease, dementia of Huntington's disease, progressive supranuclear palsy, corticobasal degeneration, and Creutzfeldt-Jakob disease are among the more common, "less common dementias". A complete neurological history and examination, supplemented by appropriate blood tests, neuroimaging and other auxiliary studies, is required to best identify the type of dementia.

RichOBoyle> What, besides appropriate medication, are the most important reasons for obtaining an accurate diagnosis as to which one the patient has?

[lhonig] The major reasons for obtaining an accurate diagnosis, are to establish prognosis (what does the future hold) and treatment plan (appropriate medications or therapies). However, some rare disorders are potentially contagious. For many other disorders there are also issues of inheritance and genetic risk. Thus, it is possible that knowing the identity of the disorder a loved one suffers from, might influence the sorts of "preventive" therapies that might become available in future years through research.

[tmgw] I'm sorry to jump back in, but what do you mean by potentially contagious?

[lhonig] tmgw: Sorry to insert that alarming note. But occasionally a dementia may be due to a viral infection such as HIV (the AIDS virus), or a bacterial infection, such as syphilis. However, these conditions can easily be tested for through laboratory testing of the blood, which can be ordered by your physician, if appropriate for the case.

[lhonig] In addition, in some cases dementia may be due to the disorder Creutzfeld-Jakob Disease (CJD), related to "mad-cow disease". CJD is generally not infectious, from situations of common contact. However, it can be infectious if someone receives a tissue-transplant, or is exposed to the nervous system tissue (brain, etc.) of the afflicted patient.

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RichOBoyle> hello 3ds399 and welcome

[3ds399] hi

RichOBoyle> Question from Melinda: 92 year old mother has AD and recently fell and broke hip. Now she has a lot of trouble sleeping (also increased agitation). She is on numerous meds in different combinations. Nothing seems to help. Do you have any suggestions on how to improve sleep?

[lhonig] Melinda: Apparently, a large number of medications have been tried. One problem that sometimes occurs is that medications are given an inadequate trial with respect to either duration of treatment or dosage. It is recommended that you work with your physicians, since these sorts of symptoms are almost always somewhat responsive to medical therapy. Sometimes, combinations of medications can also give rise to problems, through drug interactions. NEXT.

RichOBoyle> Question came from Sue K.: How is the occurrence of hydrocephalus and its cause of dementia different, or similar to other dementias. Why have many of her 'ailments' ceased for such a long period of time after occurring fairly regularly for years?

[lhonig] SueK: Hydrocephalus is one cause of dementia. In an elderly patient it is also possible that more than one cause of dementia is present. Hydrocephalus generally presents with gait disturbance and incontinence early in the course, and more prominently, than in Alzheimer's disease. As for "ailments", it is common, but not universal, that in patients afflicted with a dementia, as they lose awareness, ailments that previously were the subjects of complaints, may no longer be expressed as such.

[3ds399] Would like to know about Lewy Body if hasn't already been discussed

[lhonig] Many cases of Lewy Body dementia (LBD) have concomitant Alzheimer pathology, so many investigators view most LBD as a variant of AD. However, the general characteristics of DLB are a combination of symptoms of AD and Parkinson's disease. Also, the pathology is a combination of these two disorders in most cases. NEXT

[3ds399] How does treatment differ for Lewy Body dementia?

[lhonig] Since many cases of Lewy Body dementias (LBD) have concomitant Alzheimer pathology it is hoped that drugs being developed for Alzheimer’s disease, may work for LBD also, if they work for Alzheimer's. However, there have been reports that patient with LBD might be particularly responsive to cholinesterase inhibitors such as Aricept. While, others have not found this to be the case. NEXT

[nblackabra] My mother wasn't effected physically with paralysis after her stroke, but rather mentally. She does seem weak though & now has to walk with a cane (& I think will progress to a walker soon). Why has this dizziness & weakness occurred?

[lhonig] nblackabra: Sometimes, a stroke will leave mental deficits without causing paralysis. However, sometimes a progressive mental degeneration, is incorrectly diagnosed as being due to strokes. If there is doubt as to whether strokes are responsible, a consultation with a neurologist would definitely be advised. NEXT

RichOBoyle> Advance question from Eden: How is vascular dementia different from Alzheimer's Disease since the symptoms are the same? How does the progression differ?

[lhonig] Eden: The diagnosis of "vascular dementia" is a somewhat controversial area. We really do not fully understand the role of strokes in dementia. In many cases of "vascular dementia," the pathology is found to be that of a "mixed dementia" in which there are also Alzheimer changes in the brain. For a fuller discussion of vascular dementias, please see the Alzheimer Association and National Stroke Association web-sites.

[tmgw] I forgot that my husband is also on Catapres tt o.1mg to help with his agitation. Is this common? He is afraid for anyone to touch him in any manner. Only used for agitation?

[lhonig] tmgw: Catapres (clonidine) is generally used for high blood pressure, but sometimes is used for mental symptoms. Your doctor can best tell you why your husband is receiving this prescription. It is unlikely however, that the catapres is causing him not to want to be touched. There are many good medications for agitation, and if this is a refractory problem, you may wish to discuss this further with your MD.

[lhonig] Back to vascular dementia. In general there are two main types of vascular dementia. One of these involves big strokes occurring at intervals, and consequently usually is reflected in a stepwise decline in mental function, with each step occurring in the context of an episode of focal brain problem.

[lhonig] The other well-recognized type of vascular dementia, which is also poorly understood, is large numbers of tiny strokes affecting the brain white matter.In this dementia (sometimes known as Binswanger's disease) there is commonly significant gait (walking) difficulty, as well as incontinence of urine. NEXT.

RichOBoyle> Advance question: Semantic dementia: I am interested in this new type (?) or subtype of dementia and would like information on clinical presentation, deficits and research carried out.

[lhonig] Semantic dementia is a term for a type of dementia in which language abilities are most prominently affected. Many such cases are found to have the neuropathological changes we are now calling "frontotemporal dementia".

RichOBoyle> We are closing this up now...any final questions?

[butterfly48382] Thanks Dr. Honig

[lhonig] I would like to thank the chat room visitors for their excellent questions.

RichOBoyle> Yes...this has been an excellent session thank you everyone

[lhonig] This is a challenging area of neurology, but also a heart-wrenching area for patients and their loved ones.

RichOBoyle> And especially thank you Dr. Honig and Dr. Weber

[lhonig] Thank you and goodbye.

[tmgw] How can we go back in and read all this later?

RichOBoyle> Everyone: thank you for attending. I am polishing the transcript as we speak and will post it ASAP

RichOBoyle> If you have not already subscribed to the newsletter, please do so now...

RichOBoyle> Also, we have the ElderCare Forum where you can post stories, questions and other items.

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Advance Questions:

Mary Ann: If your parent is in total denial - and has been in all aspects of healthcare, so this is nothing new (only people in the hospital have illnesses, otherwise they are fine), - how do you make the final determination for intervention?  Do you have to wait for a crisis? All literature which I have read discusses the diagnosed who have acknowledged the problem and are working with the caregiver to provide the proper support with dignity – Thanks Mary Ann

L. Honig: Denial is often a problem, and usually difficult. It is generally best to first try and work with your parent's primary care (general) doctor, to see if certain basic testing can be done, to ascertain whether a dementia is present, and if so, which dementia. Then discussions of medications can usually be made in the context of "shouldn’t we give it a try, even if you don’t think the doctor is right?" or something like that. For different affected individuals, there may have be different strategies.

Member Question: What can be done about the hallucinations for my husband with Pick's Disease? I don't know whether to play along with them or cry.

L.Honig: Hallucinations may or may not bother a patient. But often they still bother the caregiver! It is generally not so well-advised to "play into them," because of difficulties this can create. However, equally, it is usually non-productive to constantly confront the problem. If hallucinations are distressful to the patient, it seems reasonable to work with your physician to arrive at a regimen of medications that reduces or eliminates them. If "benign," it is often best just for caregivers and others to neither confront, nor be bothered by them.

Butterfly: My husband has front lobal dementia, age 54 in beginning stages, has a very short attention span, would like suggestions on types of things to try and have him do for some stimulation. Also what is the life span for someone with front lobal and when do you know that medications should be changed or when they aren't effective enough? How does one gage this? I would very much like the transcript from this chat. Thank you from butterfly

L.Honig: Lifespans from diagnosis to death are quite variable with the dementing disorders, perhaps especially so for the frontal lobe dementias. This reflects in part the fact that disease progression rates may be variable. I am uncertain which medications are at issue. But, in general, if it is not clear that a medication is helpful to the patient, a trial withdrawal period can sometimes be helpful in ascertaining this. However, there are some definite caveats with regard to withdrawal for certain medications, especially certain cholinesterase inhibitors, so any change should be under your doctor's careful direction and supervision. 

Member Question: My Mother-In-Law become very upset at her husband or son when she is rushed into getting dressed, cannot find her purse (which she put away). She gets very hateful and says things that are really mean to the caregiver.  How can we best handle these outbreaks? Thanks .

L.Honig: These are difficult problems. They are best managed by a combination of behavioral and environment modification, and judicious prescription of medications under the supervision of her physician.

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This Chat Room provides general information that is for educational purposes only and should not be considered as offering medical advice. The information that is made available by this Chat Room should not be used for diagnosing or treating a medical or other health condition. Viewers and participants should always consult a physician or other qualified healthcare provider for the diagnosis or treatment of any medical or health condition. ElderCare Online, Columbia University and the hosts MAKE NO WARRANTIES, EXPRESS OR IMPLIED, AS TO THE VALUE, USEFULNESS, COMPLETENESS OR ACCURACY OF ANY OF THE INFORMATION THAT IS MADE AVAILABLE BY THIS CHAT ROOM.

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