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March 12th, 2009
11:21 AM ET
Can you explain frontal lobe dementia?As a new feature of CNNhealth.com, our team of expert doctors will answer readers’ questions. Here’s a question for Dr. Gupta. Question A lifelong friend of mine, a "young" 58-year-old, has just been diagnosed with frontal lobe dementia. She was told she's had it for 20 years, but there have been no noticeable symptoms until the last two years. Can you please shed some light on this disease?
Answer Thank you, Kathy, for sharing you friend’s story and for the question. While there are many potential causes of dementia, Alzheimer’s is something that often springs to mind and accounts for about 50 percent of all dementia cases. It is often thought of as an older person’s disease, but it can occur in people that are relatively young, like your friend was. Having never seen your friend or examined her, let me instead talk a little about Alzheimer's. It is a tough thing to understand because we don’t quite know what causes it, or how to cure it.
Alzheimer’s is a progressive neurodegenerative problem. You develop these plaques that deposit themselves into the brain. They start to cause memory problems that advance to cognition problems. But there is no question it’s one of the fastest-growing diseases in America. Over 5 million people have it and millions of others experience memory loss because of depression, dementia, or just the normal aging process. We've come to learn that Alzheimer’s does probably have a genetic component. This may have been the case with your friend, who doctors say has had the disease for 20 years. According to the Alzheimer’s Association, a person may go three to 20 years without ever getting a firm diagnosis. But truth be told, rarely are two patients’ experiences the same. People often have different rates of progression and severity of symptoms. We know you can’t prevent or even cure Alzheimer’s disease but there are ways to boost your memory and possibly lower your risk. Start by making simple lifestyle changes. Studies people who exercise daily are less likely to get Alzheimer’s disease versus those who don’t. And don’t stress the small stuff! Reducing stress protects the brain. Stock up on brain foods like those rich in antioxidants. Blueberries, prunes, nuts, salmon as well as the spice turmeric can help boost your memory.
It's important to remember that memory loss is a normal part of aging. In fact we all begin losing brain cells little by little at age 20. So forgetting part of a story once in a while is completely normal. A possible warning sign of Alzheimer’s is if you forget an entire experience. Do you misplace your keys? Well, that’s normal. In fact, I'm not quite sure where mine are right now. However someone with Alzheimer’s may misplace things in unusual places, such as putting the keys in the freezer.
Bottom line is if you spot unusual symptoms in yourself or a loved one, its important to get a properly diagnosis as soon as possible. Alzheimer’s disease may not be the reason for the memory lapses, and many dementia-like symptoms can be treated with medication.
Final thought Kathy – Alzheimer’s disease is said to be often harder for friends and family than the patient with Alzheimer’s because it changes relationships. The Alzheimer’s Association provides a 24-hour hotline for caregivers or family members looking for information, or just someone to talk to. To find out more information, click here.
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  About this blog
Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.
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Alzheimer's disease is a mystery that we all try to solve,but we have not succeeded yet.
Will we succeed? Hopefuly yes.
To succeed,one needs a deep understanding,and a lot of imagination.
Deep understanding,involves getting to the bottom of the mechanism
of formation of such disease.What is common for this disease,with
other(Disease).What is inflamation.What is :"Oxidative process".
Lot of imagination,involves seeing things that we usualy don't see.
We do not see what is common,and what is not,between human
and computers.Why computers do not develop Alzheimer's disease?
Why computers do not make mistakes,and we,human make mistakes.Why do we forget,and computer do not.What is the difference between "Computers lisening"and "Human Listening"?
Why the computer's Hard Drive memory is limited(To so many giga-
bites),while human's is unlimited?.Why computer's R.A.M. does not
have "Senior Moments".Why do we forget that a critical mistake in Medicine occured 108 years ago,and we continue with "business
as usual"
There are so many unanswered questions, that will continue as such,
unless we improve our imagination and get out from the current crisis
Hi, attend 2 suppt. grps (same clinic) for caregivers' of "aging brain" prob.s; we have had to convince 2 memb.s that is was ok to stay within the one grp. when they thought they "had to" leave, due to fact that both had their husbs re-dx'd w/borderline schizo. & depression, after both were dx'd with "alz. or dementia" over 5yrs. ago; they were both redx/d the same wk, at the same facility. Have been wondering (due to their lengthy descriptions of the husbs' behaviors during suppt. meetings) if the insurance industry (or perhaps their individ. plans) were dx/d to conform with "current" standards, to prevent or to "cover" (ins.coverage)? The supp't grps aide us in "sharing" "hearing others' stories" knowing nothing is ever "pat" and that "everything" changes (even when dx's are "same"/tho most in our group "vary" dx/s we can all still understand the frustrations each-other deals with on a daily-basis/esp. considering the length of time "left-standing" perhaps, for many, in the caregiver-role. Does it really help? Well, we all agree it does; but to diff. extents; perhaps it depends on the situation, the current given weather, pet-supplications(dogs& cats, etc.) or if the person ate breakfast (if "not" that adds to the caregivee's problems today, or tomorrow; drinking alcohol; taking Rxs or not; taking Rxs at diff. times, forgetting, refusing help with Rx-organization. One of the most common is the wish of the caregiveet to still "go to the office" (we have one in grp. who is an ins. agent/ you bet that does not make the rest of us feel comfortable when caregiver tells of all of the "forgetting" "inability to control data, etc." but there is plenty of caregiv"er" denial as to the current-"real" status of the caregiv"ee" (usually a spouse or male-relative; we have few paid caregivers who ever attend).
At first seeing this topic I was very interested to read the information.However,I was really disappointed to find the article talk about Alzheimer's Disease and not FTD.My mother has FTD and she too according to many exhibited symptoms long before the actual diagnosis.And once the diagnosis was made and we were aware of behavioural changes none of it seemed like Alzheimer's,but something very different.Even if the eventual outcome is the same for Alzheimer's Disease and symptoms overlap people need to understand what seperates FTD from Alzheimer's.
Yes me too...this Dr was taking the easy way out and should not even bothered to attempt to answer !!! Its like asking how to help an infected tooth and the Dr replies with a lot of info on how teeth grow! My husband has this for over 15 years and started in his 40's..we were dx with ALZ and after years of telling Drs....there is something else wrong...His memory is better than mine...but his behavior is crazy..almost psychotic at times...Finally we found a Neurologist that dx with FTD/PPA (fronto temporal dementia...and primary progressive aphasia...the 2nd affecting his speech and he has become mute for years now,,,Alz is totally opposite from FTD... Alz begins in the lower regions of the brain, affecting memory 1st ! Ftd begins in the frontal part of the brain (behind forehead) affecting behavior & speech...eventually it moves toward lower region and the memory is affected in the late stages....My husbands memory is fine and he knows everyone...however...he cannot distinguish using 'hand lotion' on your hands...he will actually eat it...if not stopped and anything else..dog food..paper towel.. etc..Very disturbing and bizarre behaviors....He is now in Nursing Home because he was a danger to me & himself...... The FTD web site is the best place to go for info and also on Facebook....Primary Dr's have not even heard of this disease and cannot over accurate education on it either..Your friend is fortunate to have you....Prayers
Hi my name is Sheralyn from Ontario Canada. I have a 95 yearold grandmother who is prone to tia has high blood pressure and demtia. Can you explian what vascular dentia entails
I have AIDS Dementia that is slowly prgressing even though my viral load is undetectable mostly I have problmes thinking things out like in Bridge or , figuring out paterns or like putting togther a bike without exact instructions even recipes I knew for yers I have trouble with, etc.. memory is ok but sometimes I have problems rembering short term.. is this like Alzimers or is it different would something like aricept help slow the progression??
I too was disappointed you didn't address the quesiton of frontal lobe dementia. Thank you for the information about Alzheimers, but please help us understand frontal lobe dementia too.
I agree with nycami. I'm disappointed to see this article does that actually talk about FTD but focuses on Alzheimer's Disease. Please check out this website for more information on FTD:
http://memory.ucsf.edu/ftd/
My Father has FTD and to me there is difference in symptoms. For instance my fathers brother has Alzheimers and can't do anything for himself. Nothing at all. My Father can walk to the store, help out at church, take a bath etc... however the FTD downside is the behavoir patterns are not consistent. He sometime has outburst that can be aggresive or use profanity. He is no longer allowed to drive. He knows that he has this dementia is trying his best to fight it.
Loved one of FTD patients need more information on it and where to get help. I see that there are plenty of senior homes for those with Alzhemiers however unfortunately those professional aren't familiar with FTD and know how to handle an individual with it.
Your Comments
Daughter missing her father...
Dear Dr. Gupta,
Frontotemporal Dementia, or FTD (also known as FTLD, frontotemporal lobar degeneration) is distinct from Alzheimer's disease, with different symptoms, a younger age of onset and a different pathologies, or causes.
FTD is actually a group of poorly understood, related conditions (including Pick’s Disease, corticobasal degeneration, progressive aphasia, semantic dementia, FTDP-17, and FTD with motor neuron disease). Together, they are estimated to compose nearly half of all presenile dementias. They are distinct from other forms of dementia in two important ways.
• Onset of FTD often occurs in the 40’s and 50’s; the average age of diagnosis is about 60, which is a full 10 years before the average Alzheimer patient is diagnosed. Thus, FTD can affect work and family in a way dementia in older patients does not.
• The hallmark of FTD is a gradual, progressive decline in behavior and/or language (rather than memory). As the disease progresses, these deficits cause significant impairment in social and occupational functioning and result in an increasing dependency on caregivers.
The course of the disease ranges from 3 to as long as 17 years with a mean duration of 8 years. Currently there are no treatments approved for FTD and there is no cure.
The Association for Frontotemporal Dementias (AFTD) was founded in 2003 by a group of caregivers, and today we have grown into a national organization that provides support for families, education for medical professionals, and funding for research.
We encourage your readers to go to our website http://www.ftd-picks.org to learn about FTD and access the support and educational tools AFTD has to offer, as well as to learn about the research efforts we are spearheading into this rare disease.
Susan L-J Dickinson, MS
Executive Director
The Association for Frontotemporal Dementias
Dear Dr. Gupta,
My husband suffered from corticobasal degeneration, one of the frontotemporal dementias. Like many others facing FTD, it was difficult to obtain an accurate diagnosis, to find doctors who were familiar with the disorder and to get resources in the community . There is a great need to have more awareness of this illness in the public domain. It would be wonderful Dr. Gupta, if you could write a column on FTD or make it the subject of a media presentation.
Louise O'Connor
Board member
The Association for Frontotemporal Dementias
Thank you to the other readers who have already posted about FTD. My mother had the same impairment, diagnosed improperly as depression at the age of 60. We, her family, didn't notice anything wrong at first. One of her friends said something about mom not being herself. Anti-depressants didn't help, and visits to new doctors shed light on the real problem.
During the course of FTD with my mom, she became quite docile and regressed to almost infant-like behavior as she couldn't eat solid food anymore, use the toilet, or walk. She lost speech and the ability to write. Between 2002 and early 2007, we took care of her the best we could at home with the help of hospice and with very little information about what was happening to her.
Ultimately, mom passed away due to kidney failure brought on by dehydration when she couldn't physically eat or drink anymore. She seemed to recognize every one of her children and grandchildren, but couldn't verbalize. All she could do was hold our hands as she slipped away.
Hi Dr. Gupta,
This is precisely why Frontal Temporal Dementia is such a devastating and misunderstood disease: everyone confuses it with Alzheimer's! There is a tremendous dearth of awareness and support around FTD which takes a toll on caregivers and results in many FTD patients receiving insufficient care at assisted living facilities in the U.S. and elsewhere.
UCSF has an incredible wealth of knowledge about this disease, which I'd urge you to peruse when you have a moment.
Thanks,
Ginnie Hazlett
My husband was diagnosed with FTD in October 2008, and his symptoms are nothing like Alzheimer's (which my Father died from).
I blamed stress,etc. for his odd behavior and speech difficulties. The most blatant problem was lack of logic, planning, judgment and reasoning abilities. He was a brilliant engineer, Stanford MBA, etc. so he compensated for many years without us realizing what was happening.
After going through Alzheimer's with my Father, and experiencing FTD with my husband, my observation is they are not at all comparable.
in addition to the information at http://www.ftd-picks.org/, please note several key distinguishing features of FTD are: 1) this disease affects younger people, people in the prime of their careers, child rearing and financial responsibilities and therefore has a tremendous impact on the families and caregivers and 2) FTD symptoms vary widely, but at their worse deprive victims of their ability to communicate, make decisions for themselves, take care of themselves or emote in any way making them completely dependent on their care giving families who are also in their prime of their careers, child rearing and financial responsibilities.
This is a horrible disease - please take the time to learn about it.
Dear Dr. Gupta,
I'm surprised and disappointed that your response to the question about FTD completely overlooked any distinction from Alzheimer's Disesase. Thank you to Susan L-J Dickinson for your informed response. I urge readers to look at the 2 websites already mentioned for more information about Front-temporal dementia. Family members need help in coping with their loved ones who suffer from FTD; indeed, the whole family dynamic changes and it can be overwhelming for everyone involved. We need all the help we can get.
My husband was diagnosed about 14 months ago, at age 65, with fronto-temporal dementia. Looking back, we realize that he probably had it for several years. While there is some memory deficit, he has several far more prominent symptoms that affect daily life. His whole personality has changed. He cannot problem solve; he has obsessive / compulsive behaviors that can be socially awkward or inappropriate. He is losing words and has trouble expressing himself, then gets very frustrated and agitated. A man who was once our rock, a calm, reasonable person who could be counted on to solve any problem, can no longer figure out how to use his computer, or even the TV remote or the toaster. Needless to say our whole family is affected by this desease.
I urge people like yourself, Dr. Gupta, whom millions consider their medical expert, to become better informed on the important issue of brain disorders that affect an aging population, and that are not all Alzheimer's disease. Thank you.
Joanne R.
We first thought my mother was suffering from depression after the sudden death of my father. She just couldn't seem to get it together. She started to over drink alcohol and over eat. She neglected her financial future and had trouble understanding business transactions. She got lost on a road trip, yet wouldn't stop driving for us to get to her. She started wearing the same outfit over and over again. She would eat or drink till she was sick. She would repeat the same story over and over. She became a compulsive shopper. She would pay her bills sporadically, yet would give her credit card information out to telemarketers enthusiastically. She didn't seem to care that we were worried sick. We took her to many different types of doctors who were unable to pinpoint a diagnosis. We started to believe she was suffering from alcohol induced dementia. Finally five years after our father died, mom was diagnosed by a Neurologist with Frontal Temporal Dementia. Her behaviors became more bizarre over the next couple of years. Mostly she became so impulse driven that she would repeat over and over "I want it" for whatever had caught her attention. She was like a out of control 2 year old. She now has progressed far enough into the disease that she was allowed into the dementia unit of a care facility, at 63 years old. The doctor's believe she may only live another 2 years. There is no diagnosis for this disease but when we reviewed the symtoms on the FTD website, we were 100% positive that this is what our mother had. It was almost a symptom to symptom match up. The more doctor's understand the Frontal Temporal diagnosis the sooner the families of the person affected can gain true insight and understanding. We hope for more clinical trials that may some day lead to treatment and eventually a cure. I hope that you can share the correct information about Frontal Temporal disease.
It is very disturbing when a physician cannot comment on a disease like FTD and instead puts the focus on Alzheimers. Although both are horrible, when asked about one or the other the individual deserves a thorough and accurate answer. As others have commented FTD is nothing like Alzheimers in the early and mid stages. The early onset of the disease and the odd symptoms often lead to many doctor visits and many diagnosis of depression or something else. As evidenced by the Doctors response many physicians cannot explain or have even heard of the disease. There are a variety of early symptoms and in my husband's case it was severe apathy and an interest in expensive stamp collecting at 58 years old. You can learn more about the day to day experiences of FTD by visiting and/or joining the following: http://www.ftdsupportforum.com/
My father has a Frontal Temporal Dementia diagnosis, and my father-in-law has an Alzheimer's Disease diagnosis. Their disease symptoms are quite distinct. They're both in their early 80s. Both very intelligent men.
Example:
My FTD dad has reasonable memory – in activities of daily living, short term items that he wants to remember, many long term memories.
My Alz. dad-in-law is losing memory for activities of daily living (heads to the kitchen when he gets up to go to the bathroom, can no longer find light switches that he installed) and makes up long-term 'facts' (ie: his occupation before he retired) – most likely because he can't remember and is expected to know.
My husband has a PhD and was a 54 year old professor at a university when he began to have symptoms such as depression, apathy, PTSD (he was in Hurricane Katrina), difficulty concentrating, poor judgement, everything BUT memory loss. He had an MRI which showed "significant atrophy of the right frontal and temporal lobes of the brain".
Had we not had the MRI, his GP would have continued to diagnose him with "marital problems". My husband can still do math in his head, but gets upset enough to harm himself when all the clocks in the house don't show the exact same time. Join the FTD caregivers website and find out what life with FTD is really like.
I am a caregiver of a husband with FTD (frontal temporal lobe dementia). It is my experience that very few people know about this disease which is not like Alzheimers at all. Families are struggling to understand this bizarre disease. In my husbands case it affects his behavior that regulates drive, motivation, executive function, and planning to the point he can not do a thing. Many people may be witnessing behavior like this in their loved ones and frustrated that no one understands it or can diagnose it correctly.
It would be wonderful if someone could inform the public at large about this disease. It could solve so much. Thank you.
Dear Dr. Gupta,
I was happy to see reference to FTD in your blog, however was terribly disappointed to see your response was actually about Alzheimer's Disease. The two are actually VERY different.
My father passed away in 2006 at the age of 50 from FTD. He was diagnosed at the age of 47. One very big difference between the two forms of dementia, is that FTD typically sets in while the afflicted person is much younger in age (compared to an AD patient). In my father's case, he was working, still had a mortgage and was pursuing a Master's Degree at the time of his diagnosis. Behavior changes are what ultimately forces families to pursue a diagnosis as opposed to memory loss. FTD is extremely rare and it may take years to get a diagnosis. Unfortunately, many in the medical field (even neurologists) are unaware that this disease exists. We were blessed with a neurologist who recognized FTD right away, however the road leading to that first appointment with him was long and tiring.
I see that Susan Dickinson of AFTD has already posted – I sincerely request that you contact the organization for additional information. I also invite you to visit http://www.anevolutionoflove.com to learn more about my family's struggle through this horrible disease.
Thank you in advance for delving further into this topic and giving FTD the voice and attention it so desperately needs.
Michelle M. Stafford, RPh
Co-Author "An Evolution of Love"
My mother has FTD, and it is very different from alzheimers. She knows who I am, and has her memory. She can't speak, and last few words I've heard her say were repetitive things, like: coffee. There is no logic or reason left. Before her diagnosis, we just thought she was being even more odd and annoying. She began collecting cats, stealing the neighbor's cats, buying un-imagineable quantities of cat food, and other items. She would place out 30 or more plates of cat food for her 8-10 cats. She stopped bathing. She would smoke compulsively. Sometime she had 3 cigarettes lit at the same time. It is definitely not just memory loss, like alzheimers. Apathy is becoming a big part of her disease. She doesn't bother to get up, doesn't bother to go to the bathroom in the toilet. She was only 62 at diagnosis, and probably had it for 4 years before. She was fired from her job at an assisted care facility because of her behavior. Vicki Larrick
FTD is indeed quite different than Alzheimer's Disease, and families need information that is more specific to FTD in order to cope with its devastating effects. Whereas AD most often affects older people, FTD strikes when people are in their prime incoming earning years and have children still at home or in college. The financial burden is tremendous. The dramatic changes in personality, loss of emotional connections to family and friends, lack of insight and empathy, socially inappropriate behaviors, distortions of judgement and logic, and ever declining language and cognitive skills all while remaining physically healthy drain a family's emotional, mental, physical, and spiritual resources.
It is my hope that a greater portion of the medical community will learn how this disease presents early on and will be able to correctly diagnose it, differentiating it from AD and various psychological disorders.
My husband suffered with FTD for about 17 years. At first the family had no idea what was amiss. It then became obvious to us who lived with him every day that something was seriously wrong. From that point it took 4 years to get a diagnosis as we made the rounds from one kind of specialist to another. He was 51 years old. We watched as the loving person we knew became mean, cruel and distant. When he died last year he hadn't recognized family members for 6 years, hadn't spoken for 5 years, and hadn't walked for 2. Hopefully the research projects in which he participated before becoming physically disabled will serve to advance the understanding of FTD for the benefit of many.
FTD is a totally different form of dementia than Alzheimer's. My husband began having symptoms at age 45 as did his father and his uncle (twins). My husband's memory was intact until the very end of his life at age 59. The frontotemporal dementia was evident in personality changes, abnormal social behaviors, speech problems and others. An excellent book speaking about FTD is "What If It's Not Alzheimer's."
There are a subset of people with FTD who also develop ALS (Lou Gehrig's disease). My husband was in this group. The last year of his life he also developed ALS symptoms. Having both diseases together brought about his death much sooner than if he had had just one disease.
Doctors need to become more aware of FTD. It is often misdiagnosed as Alzheimer's. My husband's doctors continued to diagnosis him with Alzheimer's even though I was quite sure it was FTD. The diagnosis from his autopsy was Frontotemporal Dementia with ALS.
Dr.Gupta,
I agree with some of the other posts. I was very dissapointed with your response. FTD is not Alzheimers disease. It is a very different disease with different pathology. My mother was diagnosed 3 years ago with the semantic type. She knows who we are, remembers all her family and friends, but if you tell her to pick up her purse she doesnt know what you mean. She is only 59 years old. It is a heartbreaking disease for family and caregivers. Luckily she had a very good neurologist who was able to diagnose her properly soon after her symptoms began.
You really should visit the AFTD website and learn more about the disease so you can provide the public with accurate information.
Hi Dr. Gupta,
Thanks for the info on Alzheimer's but I didn't feel that it answered the question about FTD. Please re-address the question when you have had time to do some more research. Thanks,
Laurie
Dr. Gupta – I was very disappointed to find that your response did not even discuss Frontotemporal dementia. FTD is quite different than Alzheimer's disease, and manifests itself in very different ways.
Dr. Gupta,
In your answer you did not address this person's concerns regarding FTD. FTD is quite different from Alzheimers particularly with the initial symptoms that first indicate a problem and if misdiagnosed, may be incorrectly labeled as depression or Alzheimers. My husband is a 50 year old with FTD who now lives in a nursing home. I have 3 children under the age of 16 and this disease has devastated our family and left my husband a shell of his former self. There are very distinct differences between Alzheimers and FTD and it is important that the proper diagnosis and information be relayed to the public.
Dr Gupta
Please get your response straight the next time. FTD affects approximately 250,000 people Per YEAR and is often mis-diagnosed as alzheimers, schizophrenia or depression.
Several research institutions are leading the effort to better understand and communicate the causes and impacts of this disease, as well as trying to find treatments and a cure. These include the Mayo Clinic, UC-San Francisco, the NIH, and many other research institutes.
Another website to visit that hasn't been mentioned:
http://www.mayoclinic.org/frontotemporal-dementia/
As the others have commented, what a missed opportunity for explaining to readers and viewers how important it is to get a good diagnostic work-up when symptoms of dementia appear, and how doctors need input from family members, friends and people who know the patient to pick up the sometimes subtle clues of behavioral changes. What started out as missing a few meetings, not finishing tasks, and often repeating comments in my friend turned into a diagnosis of FTD at 51. There is virtually no comparison between managing this news for a 51 year old versus managing an older Alzheimer's patient, Social workers and other support services can be completely unaware of FTD and the problems it can cause in behavior, activities-of-daily-living, and the enormous burden it places on families when patients can no longer work in the prime of their career and need constant care and oversight. In meeting others who are caring for patients with FTD, the stories can be heart-breaking of the problems of missed diagnoses (depression, psychosis and other disorders), only to find that there is no treatment once FTD is identified. And, the lack of understanding of the care issues, the highly variable course, and the lack of care facilities where younger FTD patients can be placed often leave families with no support at all. Kudos to the AFTD for working to support research and awareness of the disease, and to help families!
While Dr. Gupta's explanation of Alzheimer's is accurate he has fully missed the mark with FTD.
My 58 year old husband was diagnosed with FTD in 2005. That diagnosis came 2 years AFTER he lost his job. My husband saw 17 doctors to finally reach a CORRECT diagnosis.The reasoning for this delay is that most doctors are not educated about this particular dementia disease and thus diagnose most dementias patients with having Alzheimers or some obscure unrelated disease.
Some four years later my husband now rests comfortably in the care of hospice unable to walk, can barely talk and needs assistance to do everything. These symptoms are very much different than that of Alzheimers.
Somebody needs to inform Dr. Gupta about FTD so he can go back and retract his misinformation and provide correct, up-to-date., accurate information.
Allow me to introduce myself. I was a child actress on Broadway and on the NBC sitcom "Gimme A Break" for six seasons. I then left "the business," graduated from college (Phi Beta Kappa and Magna Cum Laude) and then law school. I passed 3 Bars and practiced law for a bit in NYC. I am now back in L.A., a successful voice over actor – and doing what I love. Unlike most child actors, I made it through the business unscathed. I often refer to my 'utopian' life – having grown up with such a wonderful family...
When I saw Dr. Gupta's response regarding FTD, I felt compelled to write on this blog. It is one of the first times I am publicly addressing this issue.
FTD is indeed different than Alzheimer's and sadly, my mother was diagnosed with it at about age 68. Looking back, I know she had it at least 6 years prior to that. Something was just wrong. It was slow at first, and I thought it was just me – that we were growing apart.
But my usual kind, patient, nice, outgoing, smart mom was changing right in front of us. I was embarrassed to go out in public with her. She just wasn't 'nice' anymore and she had no manners. Plus, she said the strangest and most annoying things – there was no filter anymore.
With FTD, the symptoms are unmistakable and manifest themselves in personality changes: loss of empathy, compassion, sympathy, knowing right from wrong or insight. Those afflicted are impatient and rigid. There is no reasoning with them. They may start engaging in uncharacteristic behaviors like hoarding, stealing, improperly talking to strangers or excessively rude behavior. You lose your loved one right in front of your eyes.
The disease, insidious as it is, seems to go undiagnosed for a long time, and people frequently get misdiagnosed. They mistakenly get treated for depression or schizophrenia. At first they may lose their job, get divorced... some people think it's a mid-life crisis. And like Susan Dickinson said above, it affects people at a much younger age than Alzheimer's.
It is not an old person's disease. And sadly, it is affecting more and more people each year: people like my mom who still have a lot of living to do and people like our family who desperately miss our loved one. It is a long and drawn out grieving process – unbelievably complex and hard for the caregiver(s).
I spent all of my formative years traveling with my mom – on the road, and out in Los Angeles. She loved being a part of my show business life: ever-patient, ever-kind, and NOT a stage mother at all! She was always there for me and everyone else: everyone's mom.
In fact, besides talking about what she eats and the weather, "Gimme A Break" and our years in Hollywood is all she nonsensically talks about anymore. I mentioned aberrant behavior... she was caught stealing the "Gimme A Break" dvd with my picture on the cover. I know she loves me...
I miss her desperately and worry about her and my dad (her caregiver) every day. It is devastatingly difficult for him –
I hope that by sharing my story I could help get FTD its fair share of publicity. I hope by doing this I can let other families know that they are not alone.
It is thought that this disease may be genetic. It has already robbed my mother of her life – I won't allow it to take mine. I hope to help raise awareness, raise money for research and treatment and most importantly, in the very near future, for prevention, so that in turn, families can have some hope!
Sadly, Lara Jill
For more information about Frontotemporal Dementia please visit AFTD's website. It is a helpful website that will inform you and answer your questions.
Thanks
Dear Dr. Gupta,
I was disappointed, but not surprised, to see that the question was about "frontal lobe dementia" yet the answer provided information only about Alzheimer's Disease. There are distinct differences between frontotemporal dementia and Alzheimer's Disease including, but not limited to, characteristics of the diseases, ramifications to families, and causes of the diseases. As a child of a parent with a form of frontotemporal dementia, my concerns are different then those of a friend whose parent has Alzheimer's Disease. FTD in my family is inherited in an autosomal dominant fashion while Alzheimer's in my friend's family appears to be sporadic. My mother began showing character and personality changes in her mid 50's and began to act like someone other than herself. There were no telltale memory issues to alert us that this could be Alzheimer's. There were odd and extreme personality changes. There was a strange disconnect and apathy that distanced her emotionally from her family. There was echoing what others said to her or repeating the same phrase over and over. There was driving to the same destination every single day. There were shopping compulsions that included ordering items from any telemarketer lucky enough to call the house and ordering from every infomercial that came across the TV. There was hoarding of meaningless items. There was gluttonous eating that caused significant weight gain to a person who had been thin all of he life. All of this caused great confusion and pain to our family. Please let your readers know that FTD is not the same as Alzheimer's Disease but is a disease with its own unique set of challenges, symptoms, and etiologies. Thank you.
Christine Hamilton
My 76 year old father was diagnosed with Picks a couple of years ago. I am disappointed that instead of addressing the disease of FTD (Picks Disease), this article focuses on Alzheimer's. There is a distinct difference, and the public needs to be educated about Picks.
I am a psychologist who runs a support group for caregivers of people with FTD. This is a dementia that is often not diagnosed and with disasterous life consequences. People with FTD show early signs in the their 40's and 50's. I have one man in my group who developed FTD at 37. The reason failure to diagnose is so serious is that the first signs are loss of impulse control. So perfectly rational people suddenly engage in inappropriate sexual activities, develop substance abuse problems, gamble away all their savings or become very aggressive. Many men who act out sexually are assumed to be experiencing a midlife crisis. His wife may divorce him and its another 10 years before they realize he has FTD. Many of these people destroy perfectly normal lives because no one understands it is a form of dementia. This disorder destroys lives. Please consider helping us educate the public about this disease that unlike Alzheimer's shows up first as problematic behavior and personality change not memory loss.
I would urge you to consider using your vast resources to inform the public about this serious disorder. I would be glad to speak with you or anyone on your staff.
Frontal temporal disease (also called frontal lobe dementia or frontotemporal dementia) affects the frontal and temporal lobes of the brain while Alzheimer's affects the hippocampus, or memory part of the brain. In FTD, the first symptoms are changes in personality, concentration, and language, not memory as is the case with Alzheimer's. With FTD, you lose social skills and empathy, start acting cold to your loved ones & not realizing it, and can frequently be misdiagnosed as having bipolar disorder. Many become childlike. FTD can affect people in their 30s, 40s 50s and 60s, while AD is usually 70s and 80s. These are huge differences, although, sadly both illnesses end up the patient unable to care for themself with no cure. I recommend the AFTD Web site for more information, as recommended by Susan Dickinson.
Dr. Gupta:
As a current caregiver for my wife, was diagnosed in 2006 at the age of 45 with Frontotemporal Dementia, I am disappointed with your response to the question about FTD. You are a great resource for health care professionals and many families look to you for guidance with medical issues
I know first-hand how FTD destroys the hope and future of young families. My wife no long speaks, wears diapers full-time, resides in a 24-hour Dementia Facility and is on five different meds to control her behavior. I am left to care for our three children. While they have lost their mother, we will not lose the fight in bringing awareness to this disease.
I urge you to do a follow-up response on FTD and a feature segment on CNN, thus bringing awareness of FTD at a National Level. Please do it so that many young families will be a peace knowing they are not alone dealing with this horrific disease
Bill Brown-Flower Mound, TX
My friend's father had FTD. It is not the same as Alzheimer's disease. My friend and her mother wrote a book about their experience with FTD; you might find it help full. It is called "An Evolution of Love" by Marie Sykes and Michelle Stafford. I think it will help any family member living with a loved one who has FTD.
My wife who is 56 years old has FTD.
Dr. Gupta's "Alzheimers" response to the specific question about "frontal lobe dementia" is disappointing. FTD is not a rare disease but many in the medical community lack awareness of FTD resulting in common misdiagnosis of Alzheimer's rather than FTD. In time, with the efforts of organizations like The Association for Frontotemporal Dementias (AFTD), progress in diagnosing and treating FTD is being made, but we have a long way to go.
I want to add my comment along with the others. FTD is very different from Alzheimers. My husband was diagnosed with FTD at UCSF after several local neuroligist missed diagnosed him. I usually have to explain to doctors what FTD is. One of the things the Association for FTD (AFTD) is trying to do is raise awareness and knowledge of FTD to doctors and nurses. I tried taking by husband to the secured Alzheimers section of a respite care facility only to find out they knew nothing about FTD and were amazed at how young and physically healthly and active he was. With what should have been a 24 hour stay, I was called to pick him up after only two hours. They didn't know what to do with him and because he has semantic dementia he was unable to communicate with them. There is an urgent need for FTD to be understood.
Frontal Temporal Lobe Dementia (FTD) is NOT the same disease as Alzheimer's. They are not even in the same family of dementias. Dr. Gupta's information is totally about Alzheimer's and is not relevant for those people and family struggling with FTD.
It's such a shame that these diseases are "lumped together" by professionals and there is so little understanding of the difference...... As noted by others, FTD has multiple variants, with hallmark traits in behavior and language, not so much on the memory front, though of course executive decision making and disinhibition (frontal lobe issues) are quite challenging. The patients are young, there are no treatments, cures, whatever, and so many of these patients were major contributors to society--my husband for example, was a highly functioning physician until his diagnosis at age 55. Please don't label all dementia as Alzheimer's. I wish the whole word "dementia" would be eliminated from our vocabulary. It's insulting and results in so much shame. This is a valid disease which has not gotten adequate attention.
You did not address the FTD question. We all know what there is to know about Alzheimer but not Frontal temporal dementia. It is not Alzheimer .it is so different. I was my husbands caregiver for 18 years with this. We did not even realize that he was suffering for years but wondered what was wrong. The last 8 years were a drain on me both physically, mntally and financially. There isn't anyone to turn to that can give you the information you need to endure this. It is no wonder so many caregivers follow soon in death. This dementia, I would dare to say, is worse than Alzheimer.
FTD and the frontal dementia common to late Parkinson's are quite distinct from Alzheimers. Public education is urgently needed so these dementias can be recognized and diagnosed. Those who suffer from these dementials may have relatively intact memories, but their personality and behavior change dramatically. They can bankrupt their families through their financial irresponsibility and lack of impulse control, strain relations with loved ones because of their withdrawal, apathy, or combativeness. Many doctors seem unaware of these disorders so they are disagnosed only after irreparable harm has been done. I hope Dr. Gupta will take this opportunity to educate the public about these "other" dementias.
My mom died with Corticobasal Degeneration–another disease in the FTD spectrum. No one had ever heard of it! How disappointing that Dr. Gupta didn't take the opportunity he had to educate people on FTD and the disorders and illnesses under it's umbrella. My sister and I found an organization, Association for Frontal Temporal Dementia (AFTD) that was most helpful with information and support. My heart goes out to the many families who are coping with any of the FTD diseases. I hope Dr. Gupta will consider revisiting the original question, thereby helping to bring FTD more into the public light so we can begin to make progress toward eliminating it!
FTD is not Alzheimer's. My mom started out with Primary Progressive Aphasia in which the person loses the ability to talk. Then, they lose the ability to read and to write. Usually, after this stage, they enter into a dementia which is FTD. They start losing all abilities until they reach the final stage, where they are bedridden, incontinent and have difficulty swallowing. However, unlike Alzheimer's, they seem to know people and places. My mom is in a facility now after living with us for 3 years. She is fed, clothed, toileted, dressed and given her medication. She has trouble walking, falls quite often and her skin is constantly splitting open or bruising. Most of the time, she just sleeps. We are very lucky, though, that she didn't get the behavioral side of FTD where the patients can be very aggressive, abusive and hard to handle. More people need to be aware of the other dementias besides Alzheimer's. Most doctors and nurses are not familiar with PPA or FTD because it is somewhat rare. I have had to educate others on the subject and I have done extensive research for my own use.
Hi Dr Gupta,
My husband was diagnosed with Fronto Temporal and Semantic Dementia in Nov.08 having had symptoms for many years previously. We had a 6 month check with our neuro last week and she couldn't emphasize enough that this is nothing like Alzheimers. My husband is part of a research programme here in the UK, and we have the very best neuro in the country ( Prof. Neary) leading the programme. I know nothing can help my husband now, but hopefully as people become more aware of this awful desease, then research that is going on now will help people in the future. Please make it your business to check out the various FTD/Picks websites and help us to bring it into the public domain. Thankyou Barbara (Wigan, England)
May I direct you to http://www.ftdsupportforum.com where the members there will only be to pleased to explain the differences between FTD and Alzheimer's Disease!
I am sooooo disappointed that Dr. Gupta totally ignored the question pertaining to Frontotemporal Lobe Dementia. I am the founder of the Frontotemporal Lobe Dementia Group of the Miami Valley Chapter of the Alzheimer's Association here in Dayton, Ohio. Frontotemporal Dementia now accounts for up to 60% of ALL DEMENTIAS throughout the world and the information which has been released as the result of the International Conference held last Fall in Antwerp Belgium supports this. Why dismiss and discount this disease process? This disease is extremely difficult to diagnose and to totally ignore it indicates that Dr. Gupta knows nothing about it. I am thoroughly disappointed in the lack of follow through on this topic. It is only fair now that an equally informative presentation be done on this disease, as there are too many people out there being treated with Alzheimer's medications which do not work, and Alzheimer meds treat the back of the brain and Frontotemporal Dementia affects the front and top of the brain.
Please take this criticism seriously and if Dr. Gupta needs to be referred to the researchers now handling this disease, I will be glad to do so.
Alice Stryker
Group Leader
Frontotemporal Dementia Support Group
Miami Valley Chapter
Dayton, Ohio
937-396-6067
Interestingly enough, I also posted another comment several weeks ago expressing my concern over the lack of follow up and the inaccurate information given initially but my post never appeared. I look forward to a response from Dr. Gupta. This forum COULD and should provide much needed accurate information to the public. I am the wife and caregiver to a 50 year old FTD patient and mother to three children ages 17, 14 and 9.
June Shin in Canada