Does anyone know if there are stages for FTD and if so, where can I find them. I have found plenty of sites that list symptoms, but none with stages. Thanks for your neverending help and support.
My husband has FTD and I have not found any stages for FTD either. From what I understand as the disease progresses the later stages are closer to AD but as a different part of the brain in affected initially it is difficult to stage. Maybe someone else here as found a resource...sorry I can't be of more help
Except for the violence which isn't noted on any stage list I've ever seen, I would expect the stages to pretty much be the same for all dementias. I don't know that for sure, but that is what I think. Why not just go and have a look at the dementia stages, even if they are called Alzheimer's stages, and see.
My husband has a non-classic Vascular Dementia. You would think that the stages would not apply since he didn't even have the classic stroke version of Vascular Dementia, but he is following the stages closely. The only difference in his case is that he has many of the speech and cognition symptoms of stage 6 and none (or maybe just almost none) of the physical symptoms. But he has ALL of the stage 5 symptoms from every list I've ever seen. I call him early stage 6.
Somebody over on AlzAssoc asked about stages for vascular dementia. I was pretty surprised to find out that even VaD -- which is often found in a mixed dementia with AD -- "typically" progresses quite differently from AD, and the symptoms that are more likely to develop are different. It's only the end that is often the same.
I haven't ever looked into whether anyone has developed stages for FTD, but since it starts out so differently, I'd imagine the progression is quite different. There are a couple of problems with developing a set of stages for FTD, I think. For one, people hadn't even realized there was such a thing as FTD until fairly recently. And for another, it appears that FTD is a family of disorders, most/all of which are still not well understood, so it's very difficult to diagnose FTD properly, which in turn makes it difficult to determine how it "typically" progresses.
I will look into it more when I have a chance, but I don't think I'm going to find much.
Thank you everyone. I noticed Jim mixing up words now, like cinnamon and salt instead of cinnamon and sugar. This is progressing so flippin fast. I can't stand it. I cry all the time, the loss is so overwhelming.
My husband mixes up words also. His problem seems to be with you and I. If I say to him "you are all right" instead of agreeing and saying "I am" he will say "yes, you are". He is also very literal if you say to him a phrase like "when it rains it pours", he will look outside and say "its not raining" and look at you oddly. Also, he doesn't get scarcasm any more either.
My husband did much of the "mixing" of words before he lost his speech entirely. He would say no when he meant yes, left when he meant right, you're welcome instead of thank you etc. Now he says nothing but "yes". I say "are you hungry?" "yes" "do you want me to kick your butt?" yes. But we can communicate sort of. If I make a statement that he agrees with I get a yes. If he does not agree or does not know, I get a look that says "what you talking about woman".
I have heard that FTD progresses fast, but am not sure of context. My DH was progressing pretty fast last year, but Namenda seemed to help. He is on Aricept, but I never noticed any benefit or any harm from it. With the new diagnosis, I wonder if we should take him off the Aricept. As of last Friday, my DH's MMSE was 19. It had gone up from the high teens in the August-September 2008 time frame to almost 25 in December-January.
Any ideas or sense of where he is compared to where others are?
Sharan, it has been said here that MMSE scores can bounce around all over the place. My DH started out with a score of 17, it came up to 24 after Aricept and Namenda, and has stayed there for about a year. I think we can better tell where they are by observing their activities of daily living.
Still digging. The best paper I've found so far -- which doesn't really talk about staging per se, but does compare the different symptoms that are seen with the different types of FTD, early on and late in the progression, and the rate at which each type progresses, is:
By the way, the MMSE may not be a good way to measure progression in FTD patients, because it is heavily dependent on language skills, and those can be strongly affected by FTD (especially PPA patients) early in the disease. MMSE has only been developed and studied for use with Alzheimer's patients.
OK-the research appears flawless. Did you bring this up just to torture me-at least my computer club showed me how to enlarge font. As usual there is no quick fix for this dastardly disease. By the way-my husband had incredible delusions and paranoia. As we say: when you've seen one FTD person you've seen one FTD person.
Maybe he was misdiagnosed, bluedaze. Last figures I saw, there is something like a 33% error rate in diagnosing FTD. There are forms of AD that can't be identified as AD (rather than FTD) until biopsy.
Just got a .pdf of a paper, generously sent to me by the senior author, Lauren Massimo, with some useful advice (or at least, advice I hadn't seen elsewhere) on management of FTD patients, including non-drug management.
For example: "Control access to foods containing large amounts of sugar, particularly in patients who are hyperoral." (Hyperoral behaviors include overeating, dietary compulsions, in which the person restricts himself to eating only specific foods -- such as a certain flavor of Lifesaver, or eating food only from one fast food restaurant -- or attempts to consume inedible objects. Patients may consume excessive amounts of liquids, alcohol and cigarettes.)
Apparently, FTD patients are very likely to have problems interpreting visuospatial relationships; and it says "Bright-colored tape can be used to mark spatial problem areas such as stairs and ovens."
Sunshyne-if eating poker chips is an example of hyperorality count my husband in. I've noticed he will eat mindlessly as long as food is nearby. Please email the paper to me-check my profile. As Bill is so end stage I don't worry about proper diagnosis any more.
Bluedaze, my first husband was color blind, both blue-yellow and red-green. We used to try to figure out what the other one saw, because he definitely saw colors, they just couldn't be called the same thing for both of us. We'd be on a street lined with trees in the fall; one would be a vivid red but they all looked green to him. But in another stand of trees, all the trees would look green to me, but he would see differences, apparently quite distinct.
He managed to finagle his way into the Army. For some reason, color-blindness is considered a handicap and they won't accept color-blind people ... except color-blind people are not fooled by camouflage, because the colors don't look right, so it's actually an advantage.
Anyway, one time we were in a gift shop that had coffee mugs every color of the rainbow hung around the ceiling. We were going around pointing out vivid colors to each other, to see what each of us thought they were. Brown? No, green. Oh, and what about that, red? No, yellow... People thought we were nuts.
When house hunting, Bill found the perfect house. When I went to see it with a Realtor it wasn't the right house. Colors all different. That was the first time we realized he was color blind. Had no problem in the army as it wasn't the red-green type. You are very correct about the camouflage. I just Googled color blindness and was fascinated. The genetics are so well documented. ONe day I hope the same for dementia
Both my sons are color blind, green, red & brown all look the same. I felt so bad when the oldest one was questioned by his 6th grade teacher as to why he used the wrong colors on his map. I didn't realize he was color blind until then, I ask the eye doctor why I hadn't noticed before, he told me it was because he was intelligent & could read the color name on crayons, however, map pencils don't list the color. I then had his younger brother checked & found he also was color blind. I remember thinking as they were given the test that I couldn't believe they couldn't read the numbers, they were so clear to me. Also, guilt because color blindness comes from the mother. They are both successful adults, so I guess it didn't hinder them any.
My dad was totally color blind except for the variations of darkness. That is how he could tell on the stop lights. Fortunately out of 7 kids, no one seemed to show any signs. I will admit, i do have some trouble with intensity. My husband is great at the most minor differences - that is what made him great as a printer.
These are not stages put together by the medical community but if you go to the FTD Support Forum at
http://ftdsupportforum.com/forum.php
and go down the page to "The Stages of Dementia" under "early stage", "middle stage", and "late stage" you will find listings of stages put together by caregivers of loved ones with dementia. They are divided into stages 1 through 6. These particular threads are now locked but were put together quite recently.
I just saw this on the site I posted about a few minutes ago, it is a summarized version of the FTD stages. There is some overlap of symptoms:
As you all know, there is a general dementia stages list which we thought did not fit FTD very well. So we elaborated our own stages. Members of this forum shared their knowledge and this is the final list that emerged.
Stages
Stage 1) Symptoms that our Loved One (person with FTD) had before I realized anything was wrong and now realise was due to the disease.
Stage 2) Symptoms that LO had that worried me enough to take them to a specialist or search online for more information.
Stage 3) Symptoms that were then obvious to everyone.
Stage 4) Symptoms as my LO got worse.
Stage 5) Symptoms of last stage.
Stage 6) Symptoms of end stage.
Stage 1: Obsessive Nervous Low tolerance Heat intolerance Unemotional Anxiety Hypochondria Apathy Aspontaneity Inflexibility Disorganization Inattention Loss Of Insight Irritability Impulsive Poor judgment Paranoia Cognitive changes Withdrawal from family/friends/society Critical of others Misnaming Expressing extreme opinions in public Irrational purchases Mood changes Dangerous driving/accidents False memories Losing/slurring speech Disinterest Sleeping more or less Lack of awareness Loss of logic Hoarding Road rage Increased appetite for sweets Change of personality Lack of responsibility Depression Interest in porn Ringing in ears Layering clothes Selfish Angry/violent Pacing Difficulty concentrating Less eye contact Memory lapses Lying Losing items Losing track of time Dangerous behavior towards children Odd behaviors Cruelty No motivation Laziness Blaming others for own mistakes Not finishing projects Careless with money Shopping compulsively Flirting Hurtful towards others Inability to focus on jobs Rigid thinking Wringing hands Swearing Selfish Hyper-religious Impatient Irrational jealousy Sex obsession in non-sexual situations High sex drive Repetitive reading/listening/watching Easily distracted Lack of affection Childishness Kleptomania Hostility Sarcasm
Stage 2: Obvious memory lapses Inability to perform work Euphoria Making animal sounds Talking less Obsessions Pacing Short concentration span Faulty logic Losing track of time Sleeping more Talking to strangers Pronounced speech problems Inability to express emotion Stubborn Over-reacting Rude Tactless Pronounced cognitive changes Inappropriate jocularity Selfish Getting lost Apathy Bad/Short temper Sexual abuse Depression Delusions Withdrawn Weight gain Difficulty learning Confusion Flat facial expressions Confabulations Hallucinations Paranoia Physical aggression Personality changes Lying Poor hygiene Choking Hypochondria Rigid thinking Night sweats Shuffling Sweet tooth Loss of objects Hording Dressing inappropriately
Stage 3: Acting against social norm Talk to strangers False memories Confusion Lack of inhibition Paranoia Agressiveness Repeat stories Invent stories Loss of facial expression Slow and shuffling gait Standing still in the middle of a room, even in busy places Difficulty in sitting down Continuing difficulties with speech Critical of others Bad eating manners Rude Extremely poor short term memory Lack of sympathy Lack of empathy Lack of compassion Drinking alcohol heavily Mixing events Not able to function correcly at work Unable to learn Nightmares Hallucinations Unable to use phone/cell phone Confabulations Repeating sounds/words Fidgeting Pacing Stubborness Rigid in timetable Staring Grunting/growling Inappropriate behaviour Lack of communication Sleeping more Tactless Lack of understanding responsabilities Lying No eye contact Issues understanding bowel movements Nervous Obsession Hoarding Anxious Restless Subdued Childish behaviour Gossiping Uncomfortable with crowds Not accept any noise Dangerous/strange behaviour with electrical appliances Violence Getting lost Poor dressing abilities
Stage 4: Aggressiveness Violence Feeling insecure Deep sadness Emotional instabilities Disorientation Rapid loss of short term memories Asking for dead family members Beating on walls Crying Yelling/Screaming Drinking excessive alcohol Difficulty sleeping through the night/sleeping during the day Loss of interest in previous things that were enjoyed Constant pacing Extreme resistance to bathing Incontinence Threats of suicide Not recognizing close family members Uncontrollable laughter Tremors Freezes during a routine activity Has to be helped with shaving, showering, dressing, eating Cannot follow plot of TV show, or a conversation Weakened swallow reflex Flat affect: expresses anxiety, but no happiness or anger Apathetic toward family and friends Some hallucinations and delusions Haunted expression although a bad smell under nose Always very cold Eating non foods Language difficulties Dressing inappropriately Confabulation Confusion Stooped posture Slow walking Less strength Can't follow simple directions Not able to write Not knowing how to sit or get up from a chair Needs help with all the activities of daily living Can not finish a sentence Not interested in any activity which requires basic skills No real sense of time, location, date, etc. poor hygiene Makes sexually explicit comments Dribbling Emotional bluntness
Stage 5: Double incontinence or urine incontinence and difficulty in general Inability to walk or even stand up by themselves Inability to feed themselves General loss of control of movements Difficulty sitting up straight in wheelchair Inability to speak in complete, intelligible sentences but still speaking gibberish Lengthy intent staring at individuals, zoning out Slipping into and out of sleep Difficulty swallowing, liquids 'pool' in mouth etc. Eating everything in sight Agitation Weakness Declining comprehension Not recognizing family members Needs to be washed and dressed Doesn't react anymore to loud noises or quarrels Mute Still smiles Fully dependent Mostly responsive to visual queues rather than sound queues No initiative Rigid Can not express feelings Paranoia Hallucinations
Stage 6: Great fluctuations in vital signs such as temperature, blood pressure, pulse. Urine will turn darker and darker Will stop ingesting food and or fluids. Dehydration Cold Extremities Shortness of breath Weight loss Restless
This scares the hell out of me...G flows between all the stages emotionally...more aggression coming? No thanks! He has been mellow for a couple of weeks, but losing his car could trigger problems coming up. We are in the depression stage right now, but he appears to be handling it at the moment...tomorrow? Who knows.
I don't know how to send you an e-mail. I have not figured out how to maneuver through the website yet. :-(
No worries, though. I think I have too much information right now. My mind is flumoxed with all of the information. I cannot process all of the information that I have. I cannot understand what is going to happen any more. On the one hand, I feel like I am going to lose my DH tomorrow. Then, I feel like he will live for a long long long time and I am not sure how I feel about that. 8/
Sharan, if you click on my name, it will pull up info about me, and I've got my email address showing for you there. You can always save the paper to read later, after you've remembered how to breathe again.
You may have a lot of good time left with your husband. Try to calm down, relax, pull yourself together again.
Oh, Jim is having more and more symptoms arriving daily. Last night while out doing our taxes, I realized I had misplaced our mortgage info, he kept telling me "I told you to get everything" I was ready to smack him. I allowed myself to argue with him, how foolish. I only made things worse on myself. He is very easily angered these days. He is beginning to have trouble following the plots of tv, movies, etc. We had our "official" interview at the VA Home today and that just added to his mood. Tonight we are all exhausted so things are quiet.
Sharan, I totally understand where you are coming from. My best advice. Put it all away for a day or so. Then just take it one moment at a time. And Breathe!
I took your advice and have tried to put it all away. Now, I am just trying to take each day one day at a time. Its not really working for me yet, but I am going to keep trying.
Comment Author jean CommentTime 2 hours ago edit delete
Are the stages of FTD and AD the same. My husband has no stamina and needs to sleep for long naps in the am and pm. Makes me wonder how accurate his testing was, as he could barely walk after he finished..... Jean