Wednesday, December 17, 2008
RGH E-Bulletin Dementia Therapies
Interesting article about drug therapies for Dementia. I was not familiar with it.
FTD affects the frontal and temporal lobes of the brain
Frontotemporal dementia affects the frontal and temporal lobes of the brain.
Credit: Mayo Foundation for Medical Education and Research
FTD Patients Cannot Detect Sarcasm
Researchers at the University of New South Wales are using sarcasm to determine whether patients have frontotemporal dementia (FTD), otherwise known as Pick's disease:
Researchers at the University of New South Wales found that patients under the age of 65 suffering from frontotemporal dementia (FTD), the second most common form of dementia, cannot detect when someone is being sarcastic.
The study, described by its authors as groundbreaking, helps explain why patients with the condition behave the way they do and why, for example, they are unable to pick up their caregivers' moods, the research showed.
"This is significant because if care-givers are angry, sad or depressed, the patient won't pick this up. It is often very upsetting for family members," said John Hodges, the senior author of the paper published in "Brain".
"(FTD) patients present changes in personality and behaviour. They find it difficult to interact with people, they don't pick up on social cues, they lack empathy, they make bad judgements," he told AFP.
...
The research, conducted in 2006-07, put 26 sufferers of FTD and 19 Alzheimer's patients through a test in which actors acted out different scenarios using exactly the same words.
While in one scenario, the actors would deliver the lines sincerely, in others they would introduce a thick layer of sarcasm. Patients were then asked if they got the joke, Hodges said.
For example, said Hodges, if a couple were discussing a weekend away and the wife suggested bringing her mother, the husband might say: "Well, that's great, you know how much I like your mother, that will really make it a great weekend."
When the same words were delivered sarcastically and then in a neutral tone, the joke was lost on FTD patients, while the Alzheimer's patients got it.
I wasn't able to find the article in Brain yet because I don't think it is out yet, but here is a similar article on the subject.
A couple comments: Pick's disease is really rare. If you have a relative with dementia odds of overwhelmingly that it is Alzheimer's and not FTD. But it is an interesting finding that patients with FTD fail to understand sarcastic statements while patients with Alzheimer's do.
I guess my question would be, what is the mechanism of perception of sarcasm? It must be the perception of some disconnect between the speaker's perceived intention and their actual statements. We know that mirror neurons -- neurons that are active when you perceive someone else performing a task, neurons that we think are involved in empathy -- are in the frontal lobes, so the loss of these neurons may explain the phenotype. However, at end stage Alzheimer's you also see frontal lobe issues. Maybe there is a stage in Alzheimer's where you would also see loss of sarcasm, although likely by that point they aren't doing much talking anyway.
The most bizarre part about all of this is the thought of putting into practice. Could you visualize going into a patient's bedroom and being sarcastic to see if they had FTD? What if they didn't? You would look like such a jackass.
Furthermore, I know a bunch of healthy people who don't understand sarcasm either. What do you make of them?
Researchers at the University of New South Wales found that patients under the age of 65 suffering from frontotemporal dementia (FTD), the second most common form of dementia, cannot detect when someone is being sarcastic.
The study, described by its authors as groundbreaking, helps explain why patients with the condition behave the way they do and why, for example, they are unable to pick up their caregivers' moods, the research showed.
"This is significant because if care-givers are angry, sad or depressed, the patient won't pick this up. It is often very upsetting for family members," said John Hodges, the senior author of the paper published in "Brain".
"(FTD) patients present changes in personality and behaviour. They find it difficult to interact with people, they don't pick up on social cues, they lack empathy, they make bad judgements," he told AFP.
...
The research, conducted in 2006-07, put 26 sufferers of FTD and 19 Alzheimer's patients through a test in which actors acted out different scenarios using exactly the same words.
While in one scenario, the actors would deliver the lines sincerely, in others they would introduce a thick layer of sarcasm. Patients were then asked if they got the joke, Hodges said.
For example, said Hodges, if a couple were discussing a weekend away and the wife suggested bringing her mother, the husband might say: "Well, that's great, you know how much I like your mother, that will really make it a great weekend."
When the same words were delivered sarcastically and then in a neutral tone, the joke was lost on FTD patients, while the Alzheimer's patients got it.
I wasn't able to find the article in Brain yet because I don't think it is out yet, but here is a similar article on the subject.
A couple comments: Pick's disease is really rare. If you have a relative with dementia odds of overwhelmingly that it is Alzheimer's and not FTD. But it is an interesting finding that patients with FTD fail to understand sarcastic statements while patients with Alzheimer's do.
I guess my question would be, what is the mechanism of perception of sarcasm? It must be the perception of some disconnect between the speaker's perceived intention and their actual statements. We know that mirror neurons -- neurons that are active when you perceive someone else performing a task, neurons that we think are involved in empathy -- are in the frontal lobes, so the loss of these neurons may explain the phenotype. However, at end stage Alzheimer's you also see frontal lobe issues. Maybe there is a stage in Alzheimer's where you would also see loss of sarcasm, although likely by that point they aren't doing much talking anyway.
The most bizarre part about all of this is the thought of putting into practice. Could you visualize going into a patient's bedroom and being sarcastic to see if they had FTD? What if they didn't? You would look like such a jackass.
Furthermore, I know a bunch of healthy people who don't understand sarcasm either. What do you make of them?
Tuesday, December 16, 2008
Crazy Behaviors
In 2001 when we brought my sister to South Texas so we (her son and his wife, mom, my husband, and me) could help care for her and try to figure out what was going on with her. Initially she was living with her son and his wife.
As the holidays approached, one doctor put Patsy on Aricept. Soon after, she took a bottle of pills one day when the kids were at work. She called me and told me what she had done. I asked her why she took the pills and she said she didn't know why. She was hysterical, screaming and crying.
The hospital transferred her to a private psychiatric facility for evaluation. This facility was a joke. They didn't want to deal with her because she had no money for treatment. At this stage, Patsy could still talk and was very good at covering many of the symptoms for short periods of time. However, if you spent any length of time with her, you would see the odd behaviors. They called us all in for a meeting, and after telling us all we were sorry examples for human beings because we couldn't care for her...they released her to a Salvation Army store. We of course went over to gather her up and bring her home.
The scary thing here is, if she had no family, she would have become a street person. Makes you wonder about those poor people out there on the streets that may be ill and their families have all been pushed away.
At this point, she would wander aimlessly and leave the house if you weren’t watching every move. She would walk in on us in our bedroom, walk out the front door, yell and throw a fit if we didn’t drive her to the right store or park in the right parking spot….you get the idea.
We actually were a bit afraid. I remember having thoughts that she might grab a knife and come after us. Seems so odd now when I look back on it. She had turned into someone I didn’t know and the doctors were no help.
As the holidays approached, one doctor put Patsy on Aricept. Soon after, she took a bottle of pills one day when the kids were at work. She called me and told me what she had done. I asked her why she took the pills and she said she didn't know why. She was hysterical, screaming and crying.
The hospital transferred her to a private psychiatric facility for evaluation. This facility was a joke. They didn't want to deal with her because she had no money for treatment. At this stage, Patsy could still talk and was very good at covering many of the symptoms for short periods of time. However, if you spent any length of time with her, you would see the odd behaviors. They called us all in for a meeting, and after telling us all we were sorry examples for human beings because we couldn't care for her...they released her to a Salvation Army store. We of course went over to gather her up and bring her home.
The scary thing here is, if she had no family, she would have become a street person. Makes you wonder about those poor people out there on the streets that may be ill and their families have all been pushed away.
At this point, she would wander aimlessly and leave the house if you weren’t watching every move. She would walk in on us in our bedroom, walk out the front door, yell and throw a fit if we didn’t drive her to the right store or park in the right parking spot….you get the idea.
We actually were a bit afraid. I remember having thoughts that she might grab a knife and come after us. Seems so odd now when I look back on it. She had turned into someone I didn’t know and the doctors were no help.
Friday, December 12, 2008
Elvis Presley and Christmas Music
This time of year I pull out the cassettes my brother made me. He loved Elvis Presley and for years told us to play Elvis songs at his funeral. We did as he requested, which makes it really hard to listen to those songs today without crying like a baby. Crying in the Chapel and Dixie were just a couple of his favorites.
Tuesday, December 9, 2008
New Drug for Alzheimer’s
Dimebon is the new drug available (research purposes) for Alzheimer's...would it be good for FTD patients? I will email them and ask the question. I guess for the memory problems associated with it, it could. My brother and sister really had good memories until the end.
Tuesday, December 2, 2008
What is Frontotemporal Dementia
Taken from NINDS Frontotemporal Dementia Information Page
(National Institute of Neurological Disorders and Stroke)
What is Frontotemporal Dementia ?
Frontotemporal dementia (FTD) describes a clinical syndrome associated with shrinking of the frontal and temporal anterior lobes of the brain. Originally known as Pick’s disease, the name and classification of FTD has been a topic of discussion for over a century. The current designation of the syndrome groups together Pick’s disease, primary progressive aphasia, and semantic dementia as FTD. Some doctors propose adding corticobasal degeneration and progressive supranuclear palsy to FTD and calling the group Pick Complex. These designations will continue to be debated. As it is defined today, the symptoms of FTD fall into two clinical patterns that involve either (1) changes in behavior, or (2) problems with language. The first type features behavior that can be either impulsive (disinhibited) or bored and listless (apathetic) and includes inappropriate social behavior; lack of social tact; lack of empathy; distractability; loss of insight into the behaviors of oneself and others; an increased interest in sex; changes in food preferences; agitation or, conversely, blunted emotions; neglect of personal hygiene; repetitive or compulsive behavior, and decreased energy and motivation. The second type primarily features symptoms of language disturbance, including difficulty making or understanding speech, often in conjunction with the behavioral type’s symptoms. Spatial skills and memory remain intact. There is a strong genetic component to the disease; FTD often runs in families.
Michael and Patsy had symptoms from both, changes in behavior and problems with language. As the disease progressed, so did the symptoms.
Is there any treatment?
No treatment has been shown to slow the progression of FTD. Behavior modification may help control unacceptable or dangerous behaviors. Aggressive, agitated, or dangerous behaviors could require medication. Anti-depressants have been shown to improve some symptoms.
Anti-depressants did help Patsy with the aggressive and angry behaviors. Sleeping pills helped her to rest at night.
Since we didn’t have clue what was going on with Michael, no drugs were administered, so no benefit here. Two weeks before his death, a doctor prescribed Aricept. A doctor later told us, this was the wrong medication, it actually gave him the ability to plan his death. He said it made the disease speed up in his case, allowing him to think more clearing in short periods of time.
What is the prognosis?
The outcome for people with FTD is poor. The disease progresses steadily and often rapidly, ranging from less than 2 years in some individuals to more than 10 years in others. Eventually some individuals with FTD will need 24-hour care and monitoring at home or in an institutionalized care setting.
After putting together a graph of behaviors over the years, I was able to trace Patsy’s odd behaviors to her late 20’s and Michael’s to his 30’s. Both progressed slowly until they weren’t working on a regular basis and at that time, it seems the disease progressed more rapidly.
What research is being done?
The National Institute of Neurological Disorders and Stroke (NINDS), and other institutes of the National Institutes of Health (NIH), conduct research related to FTD in laboratories at the NIH, and also support additional research through grants to major medical institutions across the country.
I tried to get Patsy into a clinical trial in NIH, that was the only facility at the time with any trials. We couldn't work it out, since it was so far away and there were no government funds or assistance to help with living expenses/lost wages etc with a location so far away from home (DC Area only at that time). Dr. Paul Schulz, a Neurologist in Houston did want our family to participate in on going testing to keep an eye out. As of this date, we have not done that. There is still very little being done in research compared to other diseases. One doctor told me "Today is like the 1980's were to Alzheimer's, we are just starting to work on FTD Education and Treatment."
(National Institute of Neurological Disorders and Stroke)
What is Frontotemporal Dementia ?
Frontotemporal dementia (FTD) describes a clinical syndrome associated with shrinking of the frontal and temporal anterior lobes of the brain. Originally known as Pick’s disease, the name and classification of FTD has been a topic of discussion for over a century. The current designation of the syndrome groups together Pick’s disease, primary progressive aphasia, and semantic dementia as FTD. Some doctors propose adding corticobasal degeneration and progressive supranuclear palsy to FTD and calling the group Pick Complex. These designations will continue to be debated. As it is defined today, the symptoms of FTD fall into two clinical patterns that involve either (1) changes in behavior, or (2) problems with language. The first type features behavior that can be either impulsive (disinhibited) or bored and listless (apathetic) and includes inappropriate social behavior; lack of social tact; lack of empathy; distractability; loss of insight into the behaviors of oneself and others; an increased interest in sex; changes in food preferences; agitation or, conversely, blunted emotions; neglect of personal hygiene; repetitive or compulsive behavior, and decreased energy and motivation. The second type primarily features symptoms of language disturbance, including difficulty making or understanding speech, often in conjunction with the behavioral type’s symptoms. Spatial skills and memory remain intact. There is a strong genetic component to the disease; FTD often runs in families.
Michael and Patsy had symptoms from both, changes in behavior and problems with language. As the disease progressed, so did the symptoms.
Is there any treatment?
No treatment has been shown to slow the progression of FTD. Behavior modification may help control unacceptable or dangerous behaviors. Aggressive, agitated, or dangerous behaviors could require medication. Anti-depressants have been shown to improve some symptoms.
Anti-depressants did help Patsy with the aggressive and angry behaviors. Sleeping pills helped her to rest at night.
Since we didn’t have clue what was going on with Michael, no drugs were administered, so no benefit here. Two weeks before his death, a doctor prescribed Aricept. A doctor later told us, this was the wrong medication, it actually gave him the ability to plan his death. He said it made the disease speed up in his case, allowing him to think more clearing in short periods of time.
What is the prognosis?
The outcome for people with FTD is poor. The disease progresses steadily and often rapidly, ranging from less than 2 years in some individuals to more than 10 years in others. Eventually some individuals with FTD will need 24-hour care and monitoring at home or in an institutionalized care setting.
After putting together a graph of behaviors over the years, I was able to trace Patsy’s odd behaviors to her late 20’s and Michael’s to his 30’s. Both progressed slowly until they weren’t working on a regular basis and at that time, it seems the disease progressed more rapidly.
What research is being done?
The National Institute of Neurological Disorders and Stroke (NINDS), and other institutes of the National Institutes of Health (NIH), conduct research related to FTD in laboratories at the NIH, and also support additional research through grants to major medical institutions across the country.
I tried to get Patsy into a clinical trial in NIH, that was the only facility at the time with any trials. We couldn't work it out, since it was so far away and there were no government funds or assistance to help with living expenses/lost wages etc with a location so far away from home (DC Area only at that time). Dr. Paul Schulz, a Neurologist in Houston did want our family to participate in on going testing to keep an eye out. As of this date, we have not done that. There is still very little being done in research compared to other diseases. One doctor told me "Today is like the 1980's were to Alzheimer's, we are just starting to work on FTD Education and Treatment."
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