My dear, sweet MIL was diagnosed with FTD in 2018. For 2 years before that she was becoming very paranoid, had visual hallucinations, and started to become afraid.
We moved her in with us in June 2018 and she just spiraled down shortly after. She became more paranoid and suspicious, acted violently, refused to bathe and change her clothes. She started eating less and less, had falls and was taken to the Emergency Room twice. She was totally non-responsive for most people, would not look at you or answer questions, basically a walking zombie. We placed her in a memory care facility in early February 2019 and she had passed by April 2019. It was a blessing that she went so quickly. She was not the same woman that we knew and loved and we were just content that she wasn’t suffering any longer.
I wish you the best as you travel this horrible path with your loved one. It is a road that no one should ever have to travel.
AlvaDeer has referenced FTD Zoom support groups I've mentioned for the original poster here. They can be found on either the AFTD website or on the Alzheimer's web site. I think there are more than two, the ones I use work for my schedule. I do not know if I am allowed by the groups to post their information on a public web site. Which is why I've referenced AFTD or the Alzheimer's web sites as the primary starting points for these groups.
The Association for Frontotemporal Degeneration Great website. Lots of information. They respond to emails and phone calls in a timely manner too. Don't know if the link below will work here.
Bellevue16: Per Google - What are the early signs of frontotemporal dementia? The most common signs of frontotemporal dementia involve extreme changes in behavior and personality. These include: Loss of empathy and other interpersonal skills, such as having sensitivity to another's feelings Changes in eating habits, usually overeating or developing a preference for sweets and carbohydrate
If you or someone you know is exhibiting symptoms of Frontotemporal dementia, seek medical attention immediately. The symptoms include: Behavioral changes: Inappropriate actions Lack of empathy Poor judgment Apathy Repetitive compulsive behavior Poor personal hygiene Overeating Speech and language problems Impairment or loss of speech Language difficulties Movement disorders Tremor Rigidity Muscle spasms Poor coordination Difficulty swallowing Muscle weakness This from the internet will get you started, and is a good place to begin, but the truth is that each person is as individual as his or her own fingerprint and it varies. What is now also happening is that they recognize the LONG BEFORE (often decades before) there is a REAL inability to function ) there is a loss of executive function. You may note bills aren't paid or are paid too late or too early or poorly understood. When you bring up something the reaction may be defensive, argumentative and immediate. The person may confabulate well with others and will tell friends "She thinks I am CRAZY because I paid a bill late" or some such. There is a lot of recognition that things aren't "right" and there is a pulling away into secretive behavior to hide things.
You will find that people do vary. Can you tell us a bit about things that are worrying you about the person you love?
My husband also has a form of FTD, he has Primary Progressive Aphasia (PPA), the non-semantic type. The first symptoms I noticed was that he never completed a sentence (he was a former teacher). He twisted words around; said "N" when he meant "Yes" and vice versa. His hands shook when he wrote; could barely write his name. I could tell he lacked empathy for me and our adult children and grandchildren. Took him to his primary care doctor because at that point I already did some on-line research and knew that he had PPA just by the descriptions of the symptoms and after a long visit with neurology, I was right (unfortunately). That was 7 years ago. Today he can barely speak, garbles his words, has trouble with executive functions (i.e. reasoning, problem solving, social interactions, etc.) and is anxiety ridden all the time. I no longer allow him to drive ( of course, he hates me for that). He is no longer the wonderful man I married. It is a terrible disease - I feel like I have already lost him. He is moody, has obsessive behaviors and repeats the same words over and over again - yelling at me daily. I am sorry that you may have someone you love with FTD. It is insidious.
Disclaimer: this is only a suggestion. I am not a doctor. Just wanted to share this information. Through a dementia support group have made friends with a woman whose husband has FTD. For a long time she waited to try using medication to ease her husband's symptoms. He yelled a lot. Pacing. Irritable. Two weeks ago, she'd had enough. Talked to his doctors and he is now on a very, very low dose of Seroquel. Has made a world of difference. She said now she can sit in the same room with him. My friend's father had Alzheimer's. Yelling all the time. His doctors prescribed phenobarbital. The screaming stopped. He was a much nicer person overall. Medications help manage the symptoms. What works for one person, may not for the other person. If it comes to medications to ease symptoms, I'm all for it. My husband is on two, which could change and then we'll have to try something else. That is all we have now.
My husband has FTD. Formal diagnosis two years ago. Obvious symptoms a year prior. He was struggling at work. Having a hard time using his computer. Blaming department heads for everything. Sent me oddly worded texts. Fell out of bed a few times. Thrashing about while sleeping. Fell a few times. Hands were shakey. Hard to have conversations with him. Driving was becoming difficult. Easily irritated. Work told him to take a week off. During that time he had a series of hallucinations. One of which was enough to take him to the Emergency dempartment. Imaging done. Spinal tap done. Basic congitive word test done. Couple days later at the follow up visit with a neurologist, we were told he had FTD-which was quite evident on the MRI imaging. He was not allowed to go back to work or drive a car that day. A year later a PET scan, the very detailed images of the damage to his brain broke my heart. So....he's been pretty good for a few months. I know that will change. As others have suggested-get all the legal stuff done, elder specialist lawyer, taxes (there may be deductions for medical expenses), social worker. I've completed at least 7 caregiving research studies as a participant-because I want them to know how much we're struggling as caregivers. There are Zoom FTD support groups-I belong to two. They're great. Be prepared to lose friends and family as a caregiver. Not everyone is interested in helping-that's ok too. Just don't fret about it, use that time to dig for more very scare resources, contacts, information, help and other forms of social support. Tough times don't last, tough people do. Dealing with difficult family/friends? I can change-they don't have to. Roll with it, or it rolls over you
Those are some of my mantras to get through this. This is not my first stint as a caregiver. Took care of my mom who had end stage cancer-that was easier than dementia-much better support systems, information, and medicine/treatment light years ahead of what passes as medical care for dementia-which is mired in the Middle Ages-if that.
My wife's first symptom in 2020 was memory loss. She was 56. Formal clinical diagnosis of FTD 2021. Geaton777 post above is accurate. 3yrs later, severe aphasia, extreme behavioral issues, most all the issues listed above... All drugs seem non effective or very short term relief. Prepare yourself for this journey emotionally, legally, financially -there are no words for whats to come should this be your family's path... Engage an elder care lawyer. Find a social worker. Develop a support network with family and friends... Sorry to be so blunt-but you need to prepare now.
Any noted behavioral or physical changes should be assessed by PCP first or. Geriatric Specialist. S/ S can often be associated with multiple different conditions; for example some S/ S that may present as dementia could also be a brain tumor or other neurological illnesses. Get the patient to an MD or ER if you think urgent.
For us, it was new and unusual behaviors and personality change. A positive, happy, extroverted, supportive Christian man started heavily drinking, losing jobs, becoming very verbally aggressive, using foul language, being mean and thoughtless, poor judgment, no empathy for anyone else.
Signs and symptoms of frontotemporal dementia can be different from one individual to the next. Signs and symptoms get progressively worse over time, usually over years.
Clusters of symptom types tend to occur together, and people may have more than one cluster of symptom types.
Behavioral changes:
The most common signs of frontotemporal dementia involve extreme changes in behavior and personality. These include: Increasingly inappropriate social behavior Loss of empathy and other interpersonal skills, such as having sensitivity to another's feelings Lack of judgment Loss of inhibition Lack of interest (apathy), which can be mistaken for depression Repetitive compulsive behavior, such as tapping, clapping or smacking lips A decline in personal hygiene Changes in eating habits, usually overeating or developing a preference for sweets and carbohydrates Eating inedible objects Compulsively wanting to put things in the mouth Speech and language problems Some subtypes of frontotemporal dementia lead to language problems or impairment or loss of speech. Primary progressive aphasia, semantic dementia and progressive agrammatic (nonfluent) aphasia are all considered to be frontotemporal dementia.
Problems caused by these conditions include:
Increasing difficulty in using and understanding written and spoken language, such as having trouble finding the right word to use in speech or naming objects Trouble naming things, possibly replacing a specific word with a more general word such as "it" for pen No longer knowing word meanings Having hesitant speech that may sound telegraphic Making mistakes in sentence construction
Motor disorders:
Rarer subtypes of frontotemporal dementia are characterized by problems with movement similar to those associated with Parkinson's disease or amyotrophic lateral sclerosis (ALS).
Motor-related problems may include: Tremor Rigidity Muscle spasms or twitches Poor coordination Difficulty swallowing Muscle weakness Inappropriate laughing or crying Falls or walking problems
We moved her in with us in June 2018 and she just spiraled down shortly after. She became more paranoid and suspicious, acted violently, refused to bathe and change her clothes. She started eating less and less, had falls and was taken to the Emergency Room twice. She was totally non-responsive for most people, would not look at you or answer questions, basically a walking zombie. We placed her in a memory care facility in early February 2019 and she had passed by April 2019. It was a blessing that she went so quickly. She was not the same woman that we knew and loved and we were just content that she wasn’t suffering any longer.
I wish you the best as you travel this horrible path with your loved one. It is a road that no one should ever have to travel.
I do not know if I am allowed by the groups to post their information on a public web site. Which is why I've referenced AFTD or the Alzheimer's web sites as the primary starting points for these groups.
Great website. Lots of information. They respond to emails and phone calls in a timely manner too. Don't know if the link below will work here.
https://www.theaftd.org/?gclid=Cj0KCQjw0IGnBhDUARIsAMwFDLk-7bF0DwtjWwcKelt7xIIUoXZCOUKlpjlnGD4GbckriJa67VNeGnMaAgcGEALw_wcB
You don't need all the code after that.
The most common signs of frontotemporal dementia involve extreme changes in behavior and personality. These include: Loss of empathy and other interpersonal skills, such as having sensitivity to another's feelings Changes in eating habits, usually overeating or developing a preference for sweets and carbohydrate
If you or someone you know is exhibiting symptoms of Frontotemporal dementia, seek medical attention immediately.
The symptoms include:
Behavioral changes:
Inappropriate actions
Lack of empathy
Poor judgment
Apathy
Repetitive compulsive behavior
Poor personal hygiene
Overeating
Speech and language problems
Impairment or loss of speech
Language difficulties
Movement disorders
Tremor
Rigidity
Muscle spasms
Poor coordination
Difficulty swallowing
Muscle weakness
This from the internet will get you started, and is a good place to begin, but the truth is that each person is as individual as his or her own fingerprint and it varies. What is now also happening is that they recognize the LONG BEFORE (often decades before) there is a REAL inability to function ) there is a loss of executive function. You may note bills aren't paid or are paid too late or too early or poorly understood. When you bring up something the reaction may be defensive, argumentative and immediate. The person may confabulate well with others and will tell friends "She thinks I am CRAZY because I paid a bill late" or some such. There is a lot of recognition that things aren't "right" and there is a pulling away into secretive behavior to hide things.
You will find that people do vary. Can you tell us a bit about things that are worrying you about the person you love?
hates me for that). He is no longer the wonderful man I married. It is a terrible disease - I feel like I have already lost him. He is moody, has obsessive behaviors and repeats the same words over and over again - yelling at me daily. I am sorry that you may have someone you love with FTD. It is insidious.
Through a dementia support group have made friends with a woman whose husband has FTD. For a long time she waited to try using medication to ease her husband's symptoms. He yelled a lot. Pacing. Irritable. Two weeks ago, she'd had enough. Talked to his doctors and he is now on a very, very low dose of Seroquel. Has made a world of difference. She said now she can sit in the same room with him.
My friend's father had Alzheimer's. Yelling all the time. His doctors prescribed phenobarbital. The screaming stopped. He was a much nicer person overall.
Medications help manage the symptoms. What works for one person, may not for the other person. If it comes to medications to ease symptoms, I'm all for it. My husband is on two, which could change and then we'll have to try something else. That is all we have now.
He was struggling at work. Having a hard time using his computer. Blaming department heads for everything. Sent me oddly worded texts. Fell out of bed a few times. Thrashing about while sleeping. Fell a few times. Hands were shakey. Hard to have conversations with him. Driving was becoming difficult. Easily irritated.
Work told him to take a week off. During that time he had a series of hallucinations. One of which was enough to take him to the Emergency dempartment. Imaging done. Spinal tap done. Basic congitive word test done. Couple days later at the follow up visit with a neurologist, we were told he had FTD-which was quite evident on the MRI imaging. He was not allowed to go back to work or drive a car that day. A year later a PET scan, the very detailed images of the damage to his brain broke my heart.
So....he's been pretty good for a few months. I know that will change. As others have suggested-get all the legal stuff done, elder specialist lawyer, taxes (there may be deductions for medical expenses), social worker. I've completed at least 7 caregiving research studies as a participant-because I want them to know how much we're struggling as caregivers. There are Zoom FTD support groups-I belong to two. They're great. Be prepared to lose friends and family as a caregiver. Not everyone is interested in helping-that's ok too. Just don't fret about it, use that time to dig for more very scare resources, contacts, information, help and other forms of social support.
Tough times don't last, tough people do.
Dealing with difficult family/friends? I can change-they don't have to.
Roll with it, or it rolls over you
Those are some of my mantras to get through this. This is not my first stint as a caregiver. Took care of my mom who had end stage cancer-that was easier than dementia-much better support systems, information, and medicine/treatment light years ahead of what passes as medical care for dementia-which is mired in the Middle Ages-if that.
Formal clinical diagnosis of FTD 2021.
Geaton777 post above is accurate.
3yrs later, severe aphasia, extreme behavioral issues, most all the issues listed above...
All drugs seem non effective or very short term relief.
Prepare yourself for this journey emotionally, legally, financially -there are no words for whats to come should this be your family's path...
Engage an elder care lawyer. Find a social worker. Develop a support network with family and friends...
Sorry to be so blunt-but you need to prepare now.
Your advice is perfect, not blunt when it is the truth.
HUGS
Get the patient to an MD or ER if you think urgent.
Signs and symptoms of frontotemporal dementia can be different from one individual to the next. Signs and symptoms get progressively worse over time, usually over years.
Clusters of symptom types tend to occur together, and people may have more than one cluster of symptom types.
Behavioral changes:
The most common signs of frontotemporal dementia involve extreme changes in behavior and personality. These include:
Increasingly inappropriate social behavior
Loss of empathy and other interpersonal skills, such as having sensitivity to another's feelings
Lack of judgment
Loss of inhibition
Lack of interest (apathy), which can be mistaken for depression
Repetitive compulsive behavior, such as tapping, clapping or smacking lips
A decline in personal hygiene
Changes in eating habits, usually overeating or developing a preference for sweets and carbohydrates
Eating inedible objects
Compulsively wanting to put things in the mouth
Speech and language problems
Some subtypes of frontotemporal dementia lead to language problems or impairment or loss of speech. Primary progressive aphasia, semantic dementia and progressive agrammatic (nonfluent) aphasia are all considered to be frontotemporal dementia.
Problems caused by these conditions include:
Increasing difficulty in using and understanding written and spoken language, such as having trouble finding the right word to use in speech or naming objects
Trouble naming things, possibly replacing a specific word with a more general word such as "it" for pen
No longer knowing word meanings
Having hesitant speech that may sound telegraphic
Making mistakes in sentence construction
Motor disorders:
Rarer subtypes of frontotemporal dementia are characterized by problems with movement similar to those associated with Parkinson's disease or amyotrophic lateral sclerosis (ALS).
Motor-related problems may include:
Tremor
Rigidity
Muscle spasms or twitches
Poor coordination
Difficulty swallowing
Muscle weakness
Inappropriate laughing or crying
Falls or walking problems
Source: https://www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/symptoms-causes/syc-20354737