Welcome to our new feature, a question and answer thread by Dr. Joshua Uy, a family physician and geriatrician. Dr. Uy (http://www.blogger.com/profile/00663535211093486465) has been a geriatric family physician in Pennsylvania. He is currently on the faculty at UPenn, working with medical students, residents, and fellows.
If Dr. Uy is not able to answer a question, he will present it to his faculty staff, which includes includes a former president of the American Geriatric Society, former president of the American GeriPsych Society and one of the authors of the American College of Physicians Dementia Guidelines from 2008.
Before asking a question, please read this disclaimer:
While the information on the Site was prepared to provide accurate information regarding topics related to general and specific health issues, the information contained in the Site is made available with the express understanding that neither The Alzheimer Spouse LLC, Dr. Uy and/or the other physicians with whom he consults, nor the Alzheimer Spouse website, nor members of the Site, are dispensing medical advice and do not intend any of this information to be used for self diagnosis or treatment. IF YOU HAVE ANY QUESTIONS OR CONCERNS ABOUT YOUR OR YOUR LOVED ONE'S HEALTH AND BEFORE STARTING OR STOPPING ANY TREATMENT OR ACTING UPON INFORMATION CONTAINED ON THE SITE, YOU SHOULD CONTACT YOUR OWN PHYSICIAN OR HEALTH CARE PROVIDER.
Please DO NOT start a separate thread for each questions. Keep all questions under this thread.
Dr. Josh, I see you trained at MacNeal Hospital in Berwyn. I was born there, only back then it was named Berwyn Hospital. A big welcome to this site. We need you!
Thanks all. As you know everything in medicine is a very variable experience, even on the provider side. Take what I say with a grain of salt.
I do recommend Red Yeast Rice. It does lower cholesterol in small trials. Here's an example of one:
BACKGROUND: We examined the cholesterol-lowering effects of a proprietary Chinese red-yeast-rice supplement in an American population consuming a diet similar to the American Heart Association Step I diet using a double-blind, placebo-controlled, prospectively randomized 12-wk controlled trial at a university research center.
OBJECTIVE: We evaluated the lipid-lowering effects of this red-yeast-rice dietary supplement in US adults separate from effects of diet alone.DESIGN: Eighty-three healthy subjects (46 men and 37 women aged 34-78 y) with hyperlipidemia [total cholesterol, 5.28-8.74 mmol/L (204-338 mg/dL); LDL cholesterol, 3.31-7.16 mmol/L (128-277 mg/dL); triacylglycerol, 0.62-2.78 mmol/L (55-246 mg/dL); and HDL cholesterol 0.78-2.46 mmol/L (30-95 mg/dL)]who were not being treated with lipid-lowering drugs participated. Subjects were treated with red yeast rice (2.4 g/d) or placebo and instructed to consume a diet providing 30% of energy from fat,<10% from saturated fat, and<300 mg cholesterol daily. Main outcome measures were total cholesterol, total triacylglycerol, and HDL and LDL cholesterol measured at weeks 8, 9, 11, and 12.
RESULTS: Total cholesterol concentrations decreased significantly between baseline and 8 wk in the red-yeast-rice-treated group compared with the placebo-treated group [(x+/-SD) 6.57+/-0.93 mmol/L (254+/-36 mg/dL) to 5.38+/-0.80 mmol/L (208+/-31 mg/dL); P<0.001]. LDL cholesterol and total triacylglycerol were also reduced with the supplement. HDL cholesterol did not change significantly.
CONCLUSIONS: Red yeast rice significantly reduces total cholesterol, LDL cholesterol, and total triacylglycerol concentrations compared with placebo and provides a new, novel, food-based approach to lowering cholesterol in the general population. (PMID 9989685)
So it works in populations. There are three questions 1. Does the lowering of cholesterol lead to lower heart attacks and strokes like statins? Zetia for example may possibly lower cholesterol without preventing heart attacks and strokes. So while it does lower cholesterol, in reality that isn't the goal. 2. How does one know that the red yeast rice obtained is of equal quality to that found in studies? 3. What are long term safety issues?
These are the same questions of any herbal/alternative/complementary supplement.
It's worth considering using Red Yeast Rice because not everyone tolerate statins. And it can be used with statins possibly (it does possibly work by blocking the same enzyme in the liver however).
Dr. Uy, thank you for being here and taking time to answer our questions. My DH is 77 years old and in early stage 6 AD, has arthritis and has had a heart attack. He's taking Aricept, Namenda, cymbalta, Etodolac, Enalapril, Metoprolol, Simvastatin, Diovan, Amlodipine, hydrocodone, fish oil and vitamins.
We are taking a trip for the first time in two years. He doesn't sleep well when we're away from home. Would it be safe to give him some melatonin and if so, how much?
HI Dazed, My sister in law recently asked me about sleep issues as does my father. He's a big fan of Melatonin. I think my mother may take it too. One of our faculty is finishing a large 5 year NIH grant studying melatonin in age related sleep changes. He helps run one of the sleep clinics here at Penn. Overall, melatonin is safe in reasonable dosages. Unlike other meds for sleep, it is not addictive, does not cause dependency or rebound. Overall however the effect on sleep is minimal. One review found that melatonins reduced sleep onset latency by 4.0 min; increased sleep efficiency by 2.2%, and increased total sleep duration by 12.8 min. Sleep latency=time to fall asleep, sleep efficiency=% of time in bed actually asleep instead of tossing and turning and sleep duration is total time sleeping in bed. It has been used in people with jet lag a little more successfully. Generally speaking, try any sleeping aide before traveling. Bottles in the drug stores go from 1 mg to 5 mg that I've seen. As a person gets older I usually recommend 1 mg for starters.
There are four things that a person needs to help fall asleep: 1. Proper time of day (to agree with a person's internal clock) 2. Being tired 3. Being comfortable (no distractions) 4. Consistent bedtime routine
As a person ages, the first one becomes less dominant and the later three become more important.
My husband has been in a nursing home for 9 months. He doesn't understand many questions anymore and when he speaks, it doesn't make sense. Two things confuse me. One is , when he says anything, he speaks in numbers. He will say , for example, 11, 4 7. Why numbers? The next question. I was behind him while he was in the Geri chair and I must have startled him. He made a complete statement of " You scared the shit out of me". How does that happen when he doesn't make sentences anymore?
I am interested in the speaking in numbers too. I had wondered whether if had something to do with being a CPA, that the math part of his brain was strong and has become somewhat dominant as the disease encroached, but that is purely a guess on my part. He doesn't use numbers exclusively, but it does seem to follow the example Paula M gave, a group of 3 in succession.
Well I'm going to have to ask around about this. The exact pattern of memory loss seems to be so variable with some people losing language skills before losing the ability to perform multistep tasks or someone remembering near term memories but forgetting older memories. Odd things happen. Today I had someone who could tell me WORLD backwards but could not tell me the city she was in (Philadelphia). Ultimately the answer will be in the part of the brain that is damaged. I'll try to get a more precise answer.
Dr. Josh-we expect short term memory loss. When my husband lost 50 year patterns of our living together I was stunned. Is was if our lives together had never happened.
Dr. Uy, I have a couple of questions for you.... I am wondering if you have any personal experience with Marinol use in your patients? Also I am wondering if you could explain to me, the how and whys of the incredible changes I have witnessed in my husband since he has been on it.
To give a brief history, my husband is late stage and was starving to death. The Megace he was on contributed to pulmonary embolism in August of last year and Lynn had to be taken off it because it was too dangerous. It was so painful watching him slowly die from not eating, in a last ditch effort I asked that he be put on Marinol to stimulate his appetite. It DID increase his appetite and he now enjoys eating and has gained a substantial amount of weight. This is what I had hoped and prayed for.
But, what I had not expected was the improvements in Lynn's abilities. Somehow, someway, he was released from some of the chains Alzheimer's had held him in so strongly before. He wasn't able to talk much at all, however he was still able to tell me he loved me. But he was very nonresponsive and had trouble with even yes and no answers. Now however he often speaks in complete sentences that even make sense! He can read now as well. Not books, but signs and ads from the TV. There are many changes, if you care to read more I did start a thread here.... Our experience with Marinol http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=5312&page=1
I have given this a great deal of thought as you can well imagine. I DO believe some of these improvements are because he is feeling better! Between the pulmonary embolism, and then a horrible case of pneumonia that was left untreated for far too long, he was not feeling well at all. I had to fight tooth and nail to get him x-rays and treatments. That doctor was fired, and his new doctor is wonderful. He treated Lynn with another round of antibiotics and he rebounded wonderfully! So obviously, if he is feeling better, he will do better. But these other changes, I call them miracles, I credit these to Marinol and the grace of God.
I am not sure why there is such a stigma around its use? As you can imagine I have taken a lot of slack from some people, even here on this board, for my choice. But desperate times call for desperate measures! Lynn’s doctor told me it was as safe, if not safer than some of the Alzheimer’s medication he was/is on. Seroquel and Megace to name a few. My personal feeling is that there is NOTHING worse than dying, and Lynn most assuredly was. I would love your input on this subject.
Lastly, I have been keeping documentation of these changes… who do you recommend I send them to? I would really like to see more research being done. Lynn is so much happier, more alert and animated…. In late stage, what more can a person ask for! I thank you in advance for your time, Nikki
Dr. Uy, my question may sound silly but still needs an answer. How does one pronounce your last name? Thank you for the time you spend with us. I am delighted to have you here at Joan's.
Paula M--on your question re your husband suddenly speaking a full sentence--I read or heard somewhere that when a person is stressed, the brain fires up and sometimes under these conditions, a dementia patient can perform better than usual. I am thinking that by startling him, this phenomenon may have occurred. I know that my husband occasionally surprises me by using a skill that I thought was lost for good, i.e., when he was agitated over the weekend and was able to lock me out of the house, by fiddling with a lock that is a little tricky to do. Maybe Dr. Uy could comment on this situation.
I have to say that one of the reasons I enjoy interacting on this site along with taking care of older patients is that it never becomes routine or predictable! My last name is pronounced We (or Wee or wii for the nintendo gamers). I have not used marinol and really couldn't tell you why, but I'll be back later today with some info on it. I'll answer some of the other questions too!
I know you have many questions to answer, but how do I not get lost . I asked a question and then many people ask after me. You answered them, but my question way back in the blog was not answered. Is there a better way to do this?
Having a separate thread for each question would be a lot easier. It would also make a search for past information easier. Suggestion--start each thread with "Ask Dr. Joshua".
Example: "Ask Dr. J--What do you think about Marinol?"
Hi Paula M We have a faculty meeting on Friday between the geriatricians and the Penn Memory Center. I'm going to ask your question there. Haven't forgotten about you. Hi Lori, In some ways I would not want the forum clogged by posts directed at me. I think the beauty of the forum is the interaction between all of you.
Please feel free to email me directly too if you want. joshuy@gmail.com or joshua.uy@uphs.upenn.edu. I like my gmail account better but it is less secure (private). Tomorrow may be busy but Friday I'll try to do as many answers as I can. josh
My husband is another whose ALF added Marinol the first of the year. Within a few weeks he was once again speaking in complete sentences instead of struggling to get a few words out. The cognition is still poor though, and the memory lessens almost daily. Two years ago his PCP, a geriatrician, put him on Seroquel to calm him down, which it did to some extent. Aricept was not tolerated well and quickly discontinued, but Namenda was used for over a year, until it no longer seemed to be helping. 7 months ago, when he went into the Alzheimers ALF he was put back on Namenda and the Seroquel was eased out and replaced by Risperidol, which finally calmed the extreme agitation and agression, along with repeated attempts to escape, that threatened to get him kicked out. After 3 months there the psychiatrist who decides on the meds added the Merinol. Besides helping with the speech he has become a happy camper, repeatedly telling me how much he loves living there. I had assumed that the Marinol was being given to improve his appetite, which, I understand, is the reason it's given to HIV patients, but, since he doesn't experience hunger anyway (it's a family thing) maybe it's being given for the mood altering effects of the TCH (is that it? or is it PCH).
I can see how this may be confusing with multiple questions.... I haven't used Marinol for patients just do to my own lack of personal exposure and knowledge of it. I found two review articles that you can read https://files.me.com/joshandsusie/4y2t8x https://files.me.com/joshandsusie/o5sc7h Basically studies are limited in older adults. It does help a person gain some weight possibly. It seems to have some benefit to that effect. Not as well studied as in younger pt's with HIV or cancer. Side effects include: Delirium, nausea, somnelence, fatigue, hallucinations. As with every med, not every person gets every side effects and it sounds like two folks have done well on it.
Questions to ask (about every med really) 1. What are the actual clinical benefits? 2. How many people achieve those benefits 3. What are the harms? 4. How many people get those 5. Any other interactions to worry about?
So in this case, is it weight gain for the sake of weight gain without improving quality of life or longevity? Or does it actually improve quality of life. No weight gain med has been shown to increase longevity, decrease wounds/infections, increase function. Is increased appetite a quality of life goal? For some it may be (it would be for me!). On the other hand some people are fine not having a big appetite and it does not bother them. All studies have limitations and each patient ends up being a little experiment on their own. If it works, who can argue? But as we all know, each person is so different and what works for one does not necessarily work for another.
Other medication options for gaining weight with all the caveats above include Remeron (my favorite), Megace, testosterone, steroids, growth hormone and a bunch of others like beta blockers, ace inhibitors that are really only experimental. Don't forget all the nonmedication ways of helping someone eat which are more important.
Thank you for your reply Josh, I really appreciate your time. I did skim over the articles in regard to Dronabinol (Marinol). From the first article "a cannabis derivative, which can stimulate appetite, improve mood, and aid pain relief." This is what Lynn's doctor told me, and what my research found as well. I will read the complete articles later and thank you for sharing them with us.
You asked, "Is increased appetite a quality of life goal?" You said it would be for you, and I agree. Starving to death when your body is otherwise healthy as Lynn's, is not a pleasant thing to witness. It was gut-wrenchingly painful. So though I do believe it should be a quality of life goal, for Lynn it was more of a life or death issue. We had tried more natural ways, he is still on Remeron, and though the Megace did work, it did also cause the pulmonary embolisms and he also developed pneumonia. (which is another common risk) I almost lost him.
I was left with little to no choice. Give up on him, just let him starve to death or try to find something else that could possibly work. The answer I found was Marinol. An uncle of mine who suffered with nontreatable stomach cancer died a very slow painful death. Marinol was given to him in the last year of his life and he told us it made his life tolerable. I did my own research, found it is approved for appetite stimulation and figured what did we have to lose? He was already dying; can there be a side effect worse than that?!! From my research, and Lynn's doctors opinion, it is safer than the Megace, especially with the pulmonary embolism history.
It increased Lynn's appetite right away. He is keeping steady with his weight for the first time in over 3 years!
From http://www.drugs.com/pro/marinol.html...... "Dronabinol also demonstrates reversible effects on appetite, mood, cognition, memory, and perception. These phenomena appear to be dose-related, increasing in frequency with higher dosages, and subject to great interpatient variability."
I like what you said "All studies have limitations and each patient ends up being a little experiment on their own." ..... I DO feel like Lynn is in his own little experiment. He is thriving and it is an amazing thing to witness such fantastic changes! I do hope more studies will be done. If it can bring some happiness and comfort to our loved ones, it is worth it in my opinion.
Pris, I didn’t know your husband was also on Marinol. I am glad to hear he is also having some of the same benefits as Lynn. Great news! (and yes, its THC)
Hi Nikki, I would just want to make one point about appetite. At some point, when dementia becomes severe, the loss of appetite is a natural part of the disease process and is not uncomfortable to the person. It's hard for a healthy person to imagine this, but a person with end stage dementia can be comfortable not eating. Other than that I'm glad the marinol worked for your husband, has increased his quality of life and without any apparent side effects. Can't ask for much more than that!
(the following is just a general comment) I've seen on this site and others that many people try to figure out if a medication works or is worthless. Meds aren't like that. I'm sure there is one, but as far as I can think right now, no medication works for everyone and like the marinol anecdote, some medications that are ineffective for many may work for someone. Studies are based on populations and have lots of caveats to their interpretation and application. Atypical antispychotics for behaviors, the cholinesterse inhibitors/namenda for memory, exercise for memory, zoloft for depression, red yeast rice for cholesterol etc. Some things work for some and not others. It's the very variable nature of health/disease/treatments. I can't tell you how many times I've had to swallow my pride and tell a family, "well that was supposed to work," or "I was not expecting that benefit." Patients/diseases don't always follow textbooks.
Josh - I am glad you are not afraid to admit when something hasn't worked or get an unexpected benefit. I have seen and heard of far too many doctors that will not admit being wrong. They have a 'god' complex I guess they call it. Thank goodness there are now doctors like you who will admit it and will listen to the patient and/or family members. Medicine like life is a constant learning experience.
Josh, you are right, I can't ask for more than that! <big grin> Another one of our members posted on the Marinol thread that her husband too is having these same benefits. So that is 3 just in our little group. Perhaps it will help prompt further testing. And yes we always say here, if you have seen one Alzheimer's patient, you have seen ONE Alzheimer's patient. We know nothing will work for all of our loved ones.
I thank you for your reply, but now it has prompted another question ... I hope you don't mind. Several years back my elderly uncle was dying. We were advised to stop food and only do comfort measures. We were told it would be a peaceful death. It was not :( Watching him die so slowly, and knowing we were starving him, seeing him in pain, those images still haunt me. Lynn's wasting has been my biggest concern for several years now. At one point before the appetite stimulants he was down to 92 pounds! So hard to see my once strong vibrant husband this way.... just so heartbreaking!!
He has rebounded from the embolism and pneumonia and with the Marinol is back up to 122! I would not put him in end stage, but stage 7. The reason I am clarifying that is because I am wondering if your statement holds true for any stage, or just end stage? I guess what I need to know is, if Lynn takes a turn for the worse, would starving to death be painful for him?
acccck, that was hard to ask!! And I am grateful you are here, thank you....
Hi Nikki For the most part, when someone is in the active dying process, they lose appetite. Somewhat similar to morning sickness, feeding a dying person can actually make them feel worse (bloated, nauseated etc). Not eating is a very natural way the body deals with shutting down. I've had 5 patients pass away this week: 2 end stage renal disease, 1 brain cancer, 1 laryngeal cancer, 1 pulmonary hypertension. They all stopped eating. By looking at their facial expressions, verbalizations, response to physical touch and vital signs, the nurses and I (along with hospice) did our best to keep them all comfortable and I think we achieved that. All had family with them for their last moments. It's not that you should stop food but food shouldn't be forced in a dying person. Food may still bring some comfort but for the most part, good mouth care should help relieve thirst pretty well. I wasn't with your uncle, but one question I would wonder if whether his pain was from something else other than hunger. Even in stage 7 dementia (which I do consider severe/terminal/endstage), if a person does not feel like eating or even if they forget to eat, how to eat etc they may be comfortable. I would try very careful hand feeding, making sure the mouth is clear of food between each bite etc. If they eat it all, then keep feeding them. Actually one of my patients with End stage renal disease ate 100% of one meal each day until the day she died. She was a good eater. I would never have told the nursing home to stop feeding her. Actually at one point, the nurses decided to use her PEG tube only for food and I told them that I knew her for 2 years and one of her pleasures was eating. So two weeks before she passed, I met with our nutritionist, speech therapist and nurses and started oral feeding as a palliative/quality of life intervention. I think she enjoyed it. Sigh...every patient is different. Makes if very hard to make rules. Having said that, most patients who lose weight in the setting of dementia, I would guess, are fairly comfortable. hard to take that and apply it to an individual though. josh
Josh, thank you very much for your reply. This is so hard for me..... In the last few years I have come close to losing Lynn 3 times. He wasn't actively dying (his doctors assured me of this) It was more that he didn't want to eat. He went from eating anything and everything ALL day and night, to thinking he had just eaten and was not hungry. Watching him waste away, I have never felt so helpless. I never forced him to eat, but I did coax him. I have no regrets as he rebounded wonderfully each time. He has no trouble with swallowing now on the pureed foods, he is eating great, and even enjoys it again.
I know this will not always be the case.... I know we are on the last part of our journey. My biggest fear is that his death would be painful from starvation. I can not say what caused my Uncle's pain. I was with him every day, but had no say in his care. I would have given him as much morphine as he needed, but his children didn't want to speed the dying process. WHY I have yet to figure out. Perhaps his pain was from something other than hunger... I just know for me it was painful knowing we were starving him.
Now you have assured me that it isn't painful.... That Lynn wont be in that kind of pain.... you have brought me a great deal of comfort that I was in dire need of.... THANK YOU!!!
I'd like to add something that support what Josh said about hunger. My Dad died last Thursday, and I wanted to comment on his eating situation. During his lifetime he was always a good eater, enjoyed food (he would have been 97 next month). He had no acute illnesses, but over the last few years he went from about 165 lbs to somewhere in the 120's due to loss of appetite. This last month or so, his appetite just sort of went away, only wanting something like Boost or chocolate milk. He did not seem to be in any pain or discomfort, just wanted to sleep more and more, and finally died from, as we used to say, old age. While we wanted him to eat more, I guess it was obvious that since he rarely got out of bed towards the end, the lack of activity must have reduced his hunger as well. But it was clear to me, refusing to eat wasn't causing him any discomfort.
Paula M Sorry for the delay. I was talking with one of our physicians at the Penn Memory Center. He explained to me that language is not in any one part of the brain. The sound of a word, the meaning of the word and the emotion of a word are stored in different areas of the brain that the brain has to synthesize to make a coherent sentence. So for your example, he suggested that the phrase your husband said was really just expressing an emotion like ouch. The sentence was triggered by the emotion but really was not trying to communicate a coherent thought. For those who had very repetitious work, he suggested that the phrases spoken may be devoid of meaning and are just repeated. It is not that a person with a random complete sentence has decided to put a thought together with the right words to express an emotion in a coherent sentence, rather that these phrases can be stored intact in the brain due to emotions, previous training and come out intact.
Hi Josh, I haven't welcomed you but I do enjoy your posts. My DH is 82 and was dx'd with AD in September 2007. His neurologist says he is in the mid stage where he seems to have been for over a year. He uses different words from what the word should be. The garage is either the basement or downstairs. He also doesn't process what is actually being said. We have a couple of geckos outside and yesterday when we were on the porch I said something about the geckos. He started talking about something completely different. That is just one example. Another, our eye doctor told him to use baby soap on his eyelashes. I gave him the baby soap and was telling him how to clean his eyelashes...he is cleaning his eyebrows and I couldn't get him to concentrate on his eyelashes. He said the eye doctor told him to trim his eyebrows!!!! I don't expect you to answer this because I don't suppose any of this is new to you if you have had anything to do with dementia.
Hi Jean, I guess his goes along with PaulM's question regarding language. Aphasia (language), Apraxia (multistep motor tasks) and Agnosia (recognizing objects for what they are) are part of the disease process. Language is complicated and may be better answered by a neurologist. Maybe I can get some of my colleagues to join me here!
In any case, cleaning eyelashes is a praxia issue. A person may understand, have the motor skills, the will to do something, but they can't put it together to do the task. Other praxias include brushing teeth, feeding oneself, writing.
Using the wrong word may be an aphasia. The thought may be there, the intent to say the right thing may be there, the brain can't find the right word. I have a patient who, if I ask her, will not be able to say who it is sitting next to her. But if I ask her to point to her husband she does it easily. She can't come up with his name, but if I say it, she can point to him. She has an expressive aphasia.
A receptive aphasia is when you don't comprehend what someone is saying. So for example a person will not be able to answer a question but they may be able to say what they want or repeat a sentence (no ifs ands or buts).
Sounds like all of these may be going on.
Think about what it takes if someone says, raise your hand if you know your birthday. Dr. Ben Carson from John's Hopkins (Gifted Hands/Neurosurgeon) uses this example at med school graduations (he did at mine too). You can listen to his explanation here (http://www.bucknell.edu/Documents/Communication/Carson1-2010.mp3). You have to hear what is being said, comprehend the meaning, decide to respond, understand the proper response, initiate and perform the motor task to raise your hand. (simplified). Responding with a sentence instead of raising your hand is more complicated I would think. Makes you appreciate being able to have a conversation at all!
hi Nikki (and all) I was thinking about something and I need to share it earlier in this relationship than later: I am a physician, and I do my best to give the best advice I can on this site as if I were talking to my own family, however, I would sincerely hope that everyone here realizes that I've never met any of you or your loved ones and any advice I give has to be taken with some skepticism/reservation because of that. Medicine, especially geriatrics, is a bedside discipline. The amount of information that can be gathered by looking at a patient, listening to them, holding their hand, can not be replicated on the internet. So please don't make any major decisions about the care of your loved ones based on anything I'm saying without talking to your doc first. What I hope to do is help you all learn to ask the right questions, point you in the right direction, clarify some points. Honestly, I'm still feeling out my role. There are a lot of others on this site that can also give amazing advice. I hope to add something to the conversation. And take away something myself!
I was interested in your mention of brushing teeth as a praxia issue. This is the major issue I have with my wife. Some days she flatly refuses to even make an attempt. Other times she just sucks on the tooth brush like it is a lollypop. Then, as last night, she does a really good job of brushing (after first sucking). I can't figure out the difference and how to deal with it. Her dentist suggested using chlorhexidine mouth wash if she won't brush. Sometimes she rinses well, other times she just swallows it.
I have just been reading an article by Dr. Rita Jablonski of Penn State on interventions to reduce resistant behavior in patients with dementia (published in the March issue of "Special Care Dentistry") She suggests several different methods, most of which I have tried with no benefit. I guess I'll have to hope that the occasional good brushings will be enough to prevent major dental problems, and try not to get upset when she won't brush.
Thank you so much. It does make sense to me. he used to say that sentence all the time. So it was out of habit verses a real feeling, is that what you are saying. I hate this disease. I try so hard to come up with answers because the doctor of the nursing facility is too busy to answer questions. If I can e-mail you on your g-mail account I would like to do that. Just let me know if thats ok
Dr Uy—In the introductory entry for this thread, it says you are a Geriatric Family Physician, and also work with medical students, residents and fellows at Penn State. You are gracious enough to help us here, but may I put forth some information you might consider passing back the other way. From experiences I have had as a Caregiver dealing with medical persons, I think these matters could easily make the working relationship between medical personnel and Caregivers more beneficial to the patient, provide the Caregiver with more confidence in their care, and provide the medical persons a better understanding of how the Dementia Patient actually is. These entries begin from when I started Caregiving in March 1988. I came home from volunteering at school to my DH doing a teardown cleaning of the stove because he knew I couldn’t do it. He had a rope ready in the garage, but had promised his Psychologist/Coach he would wait to use it. He told me the Coach was going to call me after lunch. He did, and we had our first Psychiatric visit the next morning. After the Dx of Schizo- Affective Disorder, we were given an Rx to fill and told to come back in 2 weeks, but to call if we had trouble sooner. 2 weeks later we were back. I reported that the med (HALDOL) had quelled the suicidal thinking, but he was up and running 20 out of 24 hours and his mind was running like a hamster In a wheel. I had spent hours on end counseling with him to calm the runaway thoughts. I was asked, “Why didn’t you call? This is the wrong med for him. Stop it and give him this (script for THORAZINE).” HOW WAS I TO KNOW WE WERE HAVING TROUBLE? Facing potential suicide, a brand new mental illness diagnosis, I was supposed to know what was TROUBLE? In 2004, DH, not having said anything to me, told the Dr. he was having memory problems. The Dr. gave him a 3 month trial pack of ARICEPT and told him to try it. “If it works you have Alzheimers, if not you don’t.” All it did was aggravate his tension and irritability. After a health crisis in 2005, later repeated in 2006, he was hospitalized to change his meds. The Drs. tested him to determine exactly what they were dealing with----VASCULAR DEMENTIA. One key med was changed in the hospital, and others were changed out-patient under the guidance of a new Psychiatrist. It took 4 changes to get THORAZINE replaced, and everytime the Dr. was asking DH all the questions on how he felt and how it worked—I was ignored. I asked why we couldn’ t go back to using PRIMIDONE which really helped control tremors instead of the ARTANE which wasn’t doing the job. Answer, “That’s an old medication.” Then,for further tremor control, the PROPRANOLOL we were also using, off label, he wanted to double. I asked, what about the effect on his Blood Pressure (what it is usually used for)? “I’m not giving it for that.” MY questions: Is a Demented patient a good source for med evaluations? Are newer meds more valuable than old ones, just because they’re new? And How does the med know what it’s being given for, and only treat that? On the flip side, In 2008 we changed to a Neuro-Psychiatrist for care of DH’s VaD. At our first appointment, he told me “You are the most valuable tool I have in addressing your husband’s case. I can’t possibly get a good picture of what’s going on with him in an office visit. He is respectful of DH and asks him questions, but has me fill him in on what’s what. He and his staff consider me part of the team. They are also concerned for me and my status in this Journey. We Caregivers aren’t medically trained, but we know our LOs. We “need to know” about the meds and how they’re supposed to work. If we ask a question, we need an answer, even if it’s “I don’t know.” It’s hell to be taking care of someone 24/7 and feel as though you’re flying by the seat of your pants, because you don’t know enough, and the persons who know, don’t/won’t tell.
I think you raise a couple of interesting points, one specific to geriatrics and one general to medicine. The dynamics of having a physician, a patient, and a caregiver in a room is a unique challenge. Believe it or not, in geriatrics and with our fellows, we actually discuss, teach and practice the "triad visit." Most physicians have never been taught anything formal about how to handle such a visit, but since this is a lot of what geriatricians do, we practice it. It takes some intentionality to make sure the patient is always heard, not marginalized, involved, respected and dignified as much as possible during an office visit and to make sure the caregivers concerns and questions are addressed and good information is obtained.
It is important to make sure in the management of a chronic disease that the decision-makers (patient and/or caregiver) are given sufficient education to truly manage the disease. It's happened to me, where something doesn't go right and the family waits until their next visit to tell me something. I may say something like, you should have called, but if I'm thinking straight I'll try to place the responsibility on me by saying, "I should have told you xxx, I'm sorry I didn't. Next time..." If I'm nervous about starting something I'll have the patient/caregiver call me in a week to let me know how things are going and if I'm really nervous, I'll schedule an office visit in a week.
Also, the other thing you point out is that when it comes to symptom based management, sometimes meds work and sometimes they don't. To broaden it, sometimes treatment plans work and sometimes they don't. Being newer is neither good nor bad. I'm definitely not wowed by new meds. I'm more than happy to let other docs experiment before I do. Watch out for docs that have a lot of drug reps in their office. To me that's a warning sign.
Josh ... Not only should all doctors become more familiar with 'triad visits,' but especially during those initial office visits it is SO important for doctors to listen to caregivers who come with their spouses. Caregivers who lives with someone 24/7 KNOW when something is wrong with their spouse. Too often, patients appear to be 'okay' during initial brief office visits with doctors even when the caregiver knows that the his/her spouse is definitely NOT okay!! That is why it is so important for doctors to listen very carefully to caregivers (administer the AD8?) and carefully read any logs the caregiver may bring to get a better understanding of the patient than any quick diagnostic measure, such as the too often misused MMSE, can provide. Quite a few caregivers who visit this site report having tried convincing doctors of problems with their spouses prior to an AD diagnosis, only to be told that their spouses did fine on the MMSE and are most likely suffering only from anxiety, stress, or depression ... and then are treated for such conditions, despite caregivers observing clear symptoms of AD that do now show up on tests like the MMSE on a given date, or AD symptoms that may not show up during a brief office visit. So definitely DO continue discussing, teaching, and practicing the 'triad visit' to improve the doctor/patient/caregiver relationship!!
I have noticed recently my wife has started shaking her arms. She could not hold a glass steady to drink it. Is this normal? She was diagnosed 3 1/2 yrs ago.
Josh--it is interesting that you mentioned Dr. Ben Carson (he is one of my heroes). Yesterday, I decided to write a eulogy for my husband (in advance) and I actually mentioned Dr. Carson as a example of someone, growing up without a father, who became an amazing human being and doctor. I drew the parallel to my husband, whose Dad had EOAD and died very young--but my husband was able to rise above that and live a wonderful life until he was dx with EOAD at 60. Thanks for the link to Dr. Carson's remarks--I am going to check it out.
Hi Moorsb I'm not a neurologist and tremors are not my strong suit. Shaking can be caused by a variety of issues from the simple (weakness) to complicated (cerebellar degeneration) and everything in between (meds). On the way home today, I was reading an article (I take the bus) that discussed how there's so much overlap between dementia types (plaques, tangles, stroke areas, lewy bodies) that the most common type of dementia really ought to be mixed type. Lewy body dementia is similar to Parkinson's. In any case, when the brain is damaged, it does seem that there is a lot of overlap between the different diseases too so at the end of the day, a lot of nonspecific symptoms become common like tremors. I'm not sure if I would say it is normal but I would say it is common. It may or may not be something to be concerned about, even common things are worth bringing up with your primary care doc. josh
My DH has such a mix of symptoms that the doctors have no idea WHAT he has other than dementia. Tremors, short-term memory is shot, Parkinson's symptoms, PCA symptoms, you name it he has it.
Hi Sheila1951 Sometimes it is hard to tell. The faculty from the Penn Memory Center and our faculty (geriatrics) get together to discuss difficult cases. There are hosts of disease that I would not be able to diagnose such as multiple system atrophy, progressive supranuclear palsy etc. A neurologist at a memory center will likely be much better than a geriatrician at handling a difficult to diagnose situation. josh
Welcome, Dr Josh. I haven't been on the site for a while since my husband has recently been placed in a nursing home and I've been busy learning to deal with the new situation for him and me. Problem: for a few days now, he has been sleeping in his chair almost all day long. Visitors (including me) have a hard time waking him up. He will hardly stay awake long enough to eat (and he loves to eat). Visitors usually take him for a walk; he manages that, but as soon as we sit down on a bench he falls asleep again. He sleeps well at night, at least 12 hours. At home he never slept in the daytime. Question: I know that increased sleeping often occurs with Alz patients. But I am wondering if there could be a gain in phasing out the Risperidone that he has been taking for two years, which calmed his agitation immensely. Could the Risperidone be causing drowsiness all of a sudden? It never seemed to before. Thanks for being here!
Sleep is definitely a challenge. There is a chance that because of the way the body processes the risperdal, and the sensitivity of the brain to the medication that after being on Risperdal 2 years there could be a change in effect or new side effects. There could be a primary sleep problem as well like REM disorder/Restless leg syndrome etc. It could be another med as well. I would bring it up and consider a taper of Risperdal. In the NH, I tend to try a taper if someone has been on a fixed dose of an antipsychotic for 3 months. There is research showing that if you just abruptly stop an antipsychotic, something like half of patients won't need it anymore.
Thanks! I forgot to mention that he is also on Exelon (almost three years) and has been getting insuline injections for just one month. He is also on a new (one month) med for diabetes but I can't find the name of it right now. I'll try to talk to the doctor in the nh tomorrow.