Interesting article & responses Explains our feelings of abandonment/guilt.
Dad diagnosed FTD at 70.
SOS fm nephew ‘Granddad has 20 pairs of specs, losing keys, tried to climb in back of van to come home with us’
Live 300 miles apart, visits few & far between, took a dislike to my, then, husband.
Sectioned, hospital to care home & back home again, lived relatively ‘normal’ if lonely life in interval.
Sneakily avoided answering door for arranged visit despite partner nearly hammering it down.(Only his estranged wife has a key).
I threw a surprise visit recently with my daughter on ‘shopping day’. Van, scooter &, bikes present, phone off. Could’ve taken bus but still no response upon returning late afternoon.
Prescribed days/times to phone. Me once a week; bro once monthly (90-120mins…) A phone for texts, another for calls. Both switched off between times…
Estranged from 1 remaining friend… (Son died so he thought he’d ‘try to be his sub’!) v lonely, depends on reluctant shop assistants for conversation, recently pocketed small items, hyper religious - preachy not churchy.
Shopping day my call day. Knew we’d been despite he ‘can’t get voicemail’. Where are you? Bolshy. THANK YOU V MUCH! Took ferry back to find him waiting (10pm) 3 doors down so didn’t need to invite us in & jumped into car faster than we could get out. LOUD. Don’t worry about ‘them’ - neighbours when we concerned.
Poss trigger mid 40s our mum died Emotionally turbulent/erratic yet kinda ‘loving’ Rejects help
My FIL was an incredible man until what we later found out was FTD, caused him to do behave -exactly- as this article outlines: "Inhibitions give way to impulsivity and hypersexuality, so that longtime faithful partners look to affairs and excessive pornography. Empathy turns to apathy." My MIL got so fed up with catching my FIL watching porn and communicating with internet sex scammers, which including giving away money and extremely sensitive personal information, that she finally divorced him. The family had long been grumbling about why dad didn't want to hang out with us anymore, why he didn't participate in family outings and activities. Why he was always watching tv whenever we visited.
...And then we found out it was FTD.
My MIL is a saint and continued caring for him, from their separate homes down the street from each other, until he passed away about 5 years later from FTD complications.
I wouldn't wish an FTD diagnosis on my worst enemy. It absolutely tore our family apart and is certainly responsible for aging my MIL, husband and BIL many years quicker than they should have.
My friend died from dementia in October 2021. She was 71. She told me about an aunt who had dementia and was afraid she might get it, too, but by that time she already had it, we just didn’t know.
Then her speech became disjointed. I described her speech later to a doctor as “rhythmically accurate but without nouns or verbs.” She didn’t make sense.
By the time we got to a neurologist, her FTD was well advanced. She didn’t know how to make coffee anymore, she didn’t understand money and her attempt at speech eventually dwindled to silence.
Another friend who knew her for much longer said she noticed a problem in 2009. By 2019, our friend was in a nursing home. Two years later, she died.
It’s still heartbreaking. She was brilliant, sweet, funny, successful, generous, and doomed to a slow, confusing death from FTD.
I’m still mad.
Mike Reynolds--FTD
My husband of then 38 years, Michael Reynolds, began showing signs of "something" in 2005. Previously empathetic and emotionally connected, he lost the capacity to listen, to consider anyone else or his circumstances. If he had an appointment at four in the afternoon, he went to the place of the meeting at one and was enraged that no one was there, etc., etc. After many therapists, various doctors, tests and more tests, in 2009 we finally saw a neurologist who gave him a diagnosis of FTD.
At that time, neither I nor anyone else in our family, had heard of FTD. As we set about trying to educate ourselves we found pitifully little information--nothing from a caregiver's point of view. I vowed to write the book I wish I could have read at that time.
Mike was 6' tall and nearly 200 pounds. He was fast and volatile and the time came when it was not safe for him, or for me, or for others, for him to be free-ranging. He was in memory care facilities from 2011 until his death in December of 2014. For the last three years of his life he walked constantly, night and day, in a loop around the facility. He ate constantly, often from others' plates, and he steadily lost weight. At the time of his death he weighed 114 pounds and until that very night had been walking, walking, walking around the facility. His behavioral changes and decline were the very saddest times of my long and sometimes sad life.
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@Marilyn Reynolds
Mike Reynolds--FTD (Cont.)
The man with whom I'd spent so many good years disappeared sometime between 2005 and 2010.I'd grieved his loss long before his physical death and felt only relief with his last breath.Poor financial decisions on Mike's part before I realized what was going on with him, the costs of memory care facilities not covered by insurance, all in the midst of the recession, led to the loss of our home, all of our retirement savings, and my ultimate bankruptcy. Mine is not the retirement we had expected or planned for. I will never again own a home, or take an extended European or Asian trip. But within certain limits I am again financially stable. I'm happy in my rented duplex in an old Sacramento neighborhood. At 86 I am amazingly healthy--so glad to be on the other side of the experience of loosing the essence of my long-time partner to the horrendous effects of FTD.
I kept the promise to myself to write the book I wished I could have read when Mike was first diagnosed with FTD. "Til Death or Dementia Do Us Part" was published in 2016 and although it's a tough read and certainly not a best seller, I sometimes get emails from readers saying it helped them feel less alone, or offered some valuable insights into caregiving challenges. That's enough.
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@Marilyn Reynolds Glad to hear you came through this experience with your husband with all your own faculties in tact.
A true sacrifice and labour of love, like so many more stories on here.
Thank you for sharing your story.
The initial lack of behavioural modulation that is a hallmark of FTD is commonly mistaken for a delayed "midlife crisis" ...in many instances it begins with what appears to be the carefree adaption of Seize the Day on steroids...dramatic changes in dress, spending binges, heightened sexuality, unfiltered comments in inappropriate settings.
Thanks to articles like this, awareness of the disease and the damage it inflicts is becoming more prevalent. Most importantly, more Primary Care Physicians now have it on their radar , thus increasing the odds of an early diagnosis.
There is an AFTD HelpLine([email protected] or 866-507-7222).
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Seems like we are far far from real therapies because we know nothing about what proteins are changes very very early in the disease. This progranulin change may occur only in response to extensive injury. You now know the quirky behavioral changes with the disease, why not develop an online cognitive test to take every 2 years for all adults 30 yrs and up along with a tube of blood, every 2 years. With samples from over 10 million Americans, we could finally crack FTD and Alzheimers early events. Seems a no brainer (no pun intended) for NIH hopefully and if not Pharma.
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Until the brain autopsy showed AZ, we weren’t sure what my husband had. The diagnosis of Lewy Body Dementia kept him from one of the best (and most expensive) nursing homes in NYC. His disease affected him much like these poor people — obsessions and delusions. He eliminated foods that he believed he couldn’t eat until he wouldn’t eat at all. There are no good endings for any of these.
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@Ellen guest
Thank you for sharing your story and so sorry you had to witness your husband’s decline with dementia.
Our Dad is currently fixated on sausage rolls. He describes making Sunday lunch on Saturday because he’s too tired to cook on Sunday so enjoys it 2 days in a row.
There’s some logic in there somewhere but I’m no longer clear how much of this is reality and how much might be fantasy. Hoping it’s not fantasy as there’s very little nutrition in the cheapest supermarket offerings of sausage rolls.
He looked quite thin (facially) when we visited earlier this year, but hard to see by streetlight and he was wearing a long overcoat.
Such a strange existence but at least he’s still eating something.
We’d like to help create a ‘better’ ending (although he’s still going strong 12 years in and actively seeking another 30 - a number which doesn’t change no matter how many years elapse!) but the shutters are down.
Delusions and obsessions heavily present - Such a challenging condition.
I have become too familiar with this problem because it is one of my husband's diagnoses. It is not a single disease with one cause, it is many. In retrospect I am convinced my husband began to show signs in his 30's if not earlier. The progression was very slow although his behavior really began to deteriorate 11 years ago. His memory and speech are mostly intact; he can still drive under limited circumstances. He has apathy, poor executive function and processing problems. He also has been diagnosed with a mental illness and I suspect he also has a personality disorder. He's totally lost his ability to express emotion except occasional anger which is directed at me. He's had episodes of acute psychosis. He has always been a difficult person. I'm the caregiver. He's not suitable for assisted living and I don't want extra paid caretakers in the house. Both of us view that as intrusive. My greatest concern is our adult son who has stopped taking care of himself and has no insight about his own very abnormal behavior.
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@AHominid
How is your husband and son now ? my son is showing signs I would love to hear more
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@AHominid
Please do not rule out paid caregivers forever. If you can find an experienced professional caregiver - ideally, a team of them - they can be hugely helpful as dementia progresses.
Not least because nobody can be a caregiver 24/7, and dementia is not a 9-to-5 condition. It's not possible for one person on their own to look after somebody else for years, without it affecting the caregiver's own health. If your adult son may be becoming ill himself, your future workload may increase. I'm eternally grateful to the caregivers who helped me look after my ageing mother.
Dementia is the worse thing to happen for aging.
No recognition of loved ones and have heard some tend to use obscenities what they never ever known to use in their whole life .
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We've dealt with both FTD and Alzheimer's in our family. The "unofficial grief" and the "long goodbye" can be devastating and last beyond the death of the sufferer. My mother-in-law was "gone" for more than 8 years; when the end finally came, my wife decided not to travel to her childhood home to bid farewell. "I've been saying good-bye for 8 years," she said. Now, two decades later, she still grieves not having done so even though she knows her mother would not have known she was there. Dementia is truly a situation in which there is no "right" thing to do, no "good" way to deal with it.
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So at this point, is there any real "self" left to Mr. Karger? My father died of Alzheimers and by the time he died I thought only a couple of fragments of who he once was were still there.
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"Dr. Grossman is short and charismatic".
And that is that, as they say.
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Thank you for bringing attention to this critical issue. One aspect that is often ignored is the impact on the children of the person with FTD, especially when they are divorced or otherwise single.
My brother and I had to become caretakers to our mother when she developed progressive supranuclear palsy (PSP) with FTD. We had enormous trouble getting her a diagnosis and then had to find her an assisted living facility, clean and sell her house, and take on heartbreaking tasks like buying the aforementioned adult teething toys.
Nothing can prepare you for this kind of responsibility, and it is unconscionable that the government provides essentially no support in these situations. Medicaid did help, but not much, and only after we had depleted all of her savings and the proceeds of selling her house.
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Ms Karger should consider separation. I mean who wants to live like that for possibly another decade! This is a very difficult decision and the logistics very complicated and costly but the alternative seems exhaustingly painful. However, the costs of this arrangement maybe imposible for them if there is no other support from family members. I wish them well.
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@Patrick
Wow, your life partner has a chronic illness, and your response is to bail?
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One of our neighbors with some kind of dementia (I don't exactly what) has been missing from his home for 5 days. We live in a rural area and a friend of mine was the last person to see him, walking down a two-lane road. She thought he was walking for exercise, not knowing that he has dementia. The sheriff's office, the Wildlife, Fisheries department and the community have searched everywhere for him - roads, creeks, ponds, woods, ditches - but haven't found him. His family said that he has tried to return to Colorado in the past where he has fond memories, so it is possible, if not probable, that he hitched a ride from a stranger. His wife and children are devastated and terrified by this. Please keep him and them in your prayers that they will find him soon.
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"The grief is not official' are the wisest words ever spoken. When you are a family member of someone with dementia, any kind will suffice, you experience death a thousand times over. Grief is ongoing, never ending. By the time physical death actually happens, there is no more grief. It is all used up.
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@RSP Thank you for this observation. It is so true.
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People are clearly living longer than they need. I honestly don't know we bother.
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This type of dementia occurs in the fifth or sixth decade of life.
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@Jen Unfortunately, we didn't come equipped with a convenient "off" switch. Instead, if we want to stop living longer than we need, we have to do all that unpleasant brain-blowing, poison-drinking, flesh-cutting stuff to get this poor old brain to finally give up and die. (Poor design, if you ask me...)
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Reading the comments below, I am realizing that I am lucky that my mother is dying of cancer right now, and not dementia. What these caregivers are dealing with is so much more difficullt.
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@Laura Robinson
Oh, yes. I nursed my father through fatal lung cancer. My mom has dementia after a stroke and this is a nightmare in comparison.
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Decades ago we were told to keep our minds active to avoid dementia.
The again I found out a well know singer is in a pathetic stage of dementia, who was very smart , had music schools all over , travelled all over the world to perform.
Then I thought how such a cunningly smart person could be in such pathetic stage.
Now, reading this article it makes plenty of sense.
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Dr. Peskin, Why did you mention Dr. Grossman is 'short?' What does that have to do with anything?
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@MM Friese When I read "short and charistmatic" I didn't notice it the way you did. I think it's a way to give readers a sort of mental image of the person being described. Further, making the observation of shortness or tallness isn't as loaded an observation as skinniness or fatness, is it?
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"Inhibitions give way to impulsivity and hypersexuality ...."
We couldn't figure out what was going on with an elderly relative who suddenly became obsessed with sex. Comments to strangers, porn magazines, 'jokes' that were only funny to him. At first it just seemed weird and embarrassing until he groped a female doctor he had known and respected for years.
The man as we knew him had vanished.
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Thank you for this article. But it begs some neurological answers, beyond the genes identified in creating this condition.
How do the frontal lobes degenerate? Is there just nerve tissue or gray matter tissue death?
The left and right temporal lobes, in most people the left temporal deals with the vast complexities of language and the neurons there are differentiated into - what - thirty different straita - zones, for all different aspects of language.
So, if the person is unable to understand an object in his or her hand, what is it - the cognitive area simply cannot compute a hammer?
The patient mentioned did not seem to suffer from an abatement of language skills, other than in terms of identification -
Zipper is a great word to show very young children - with a demonstration on how a zipper works.
It is also so curious why the frontal lobes are involved in self control. Those suffering damage to the frontal lobes often have impulse control problems - serious ones. I wonder if the treatments for dementia in this article might be applied to brain damaged persons suffering from a lack of impulse control.
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My mom has had FTD since age 64. 13 years ago. The frontal lobes are responsible for Executive Function. Her disease became clear when she couldn't prepare oatmeal. Measure add milk microwave. When I opened her closet she had assembled 20 outfits as a coping mechanism. Friends thought she was drunk at 11am when they ran into her.
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Maybe an article on how most family members flee the scene when someone needs caregiving? In my experience, most people can't handle it.
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We have assisted suicide all wrong. At some point, the caregivers have to be able to decide: prolong live a shell life or not.
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@Gil Narro Garcia These decisions are beyond reach once a person is demented, thus making it all the more important to have a trusted POAHC or a well thought out Living Will. Once a person becomes incapable of expressing a rational thought regards their own care, it must be assumed they want everything possible to prolong their life irregardless of the QOL.
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My step-son had what I term Nature's double whammy, FTD and ALS. Mercifully, the FTD cancelled any suffering he was experiencing from ALS. In a word, he didn't know he was sick. We kept him at home until he began eloping, finding ways to unlock the doors and run down the street. Lucky for all of us we found a humane assisted living facility where he stayed until he died some months later. Medical science is incrementally closing in on possible treatments but everyone suffers when a healthy brain succumbs to this insidious disease and reduces a vital human being
to an empty shell.
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A dear brother in law of mine was diagnosed with FTD in his 50’s and several months after the shock of the FTD diagnosis came the ALS diagnosis. Two of the cruelest diseases attacking one person at the same time. Mercifully, before either could torment him for years, he died of pneumonia, dying with peace and dignity and grace, surrounded by loved ones especially his loving wife. He is still missed, five years later, but I am glad he’s far removed from the reach of suffering. I’m glad you were able to find care for your family member. It’s such a brutal challenge for everyone involved.
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The comment that people usually die within a decade of diagnosis may be the standard, but my sister was diagnosed with FTD when she was 48 and is now in her 60s. She shows no signs of dying any time in the near future. Her symptoms were obvious to family members as early as age 45 and while she has been non-verbal for 10 years her body has not shown any signs of weakening. She cannot feed herself or do much of anything else, but when an aide gets her to her feet and points her to another person at the end of the hall she will walk there, but the person she is walking towards has to catch her to stop her. They turn her around and send her back. She no longer recognizes people, but she never had a personality change other than going from funny and outgoing to blank and voiceless. She has been through a few studies at Duke University and Emory University, but there was nothing they could do for her, and they found her early onset FTD was going to have outcomes, other than aphasia, that they could not predict. While early onset FTD is not common and not genetic in this case, is there anything that explains the early onset or the idiopathic nature of cases such as my sister's case. I try to read the literature but had not found anything in the way of answers.
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Pardon the bit of levity here, within this very serious subject (of which I am painfully and personally aware, have experienced) ...
but I started to read this and got a few paragraphs in when a sense of deja vu washed over me : haven't I read this before??
Sure enough, a 2019 article. So this old memory still has that much going for it :)
But, as ever, timely and important, and even to re-read, with new comments ... one can always learn more.
To all grappling with this or any type of dementia within themselves or their loved ones ... wishing you even just one moment of joy, peace, laughter -- or some aspect of 'normalcy,' -- each day.
For the blissfully uninitiated, often even a single moment of a piece of 'normal' seems impossible, is a LOT to hope for, often is elusive, exhausting and disappointing across all the moments of a long day or night when it simply can't manifest -- but if & when it does: it's everything.
Blessings to all.
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I am the caregiver for my husband who has a terminal cancer diagnosis. His sister died from cancer a couple of years ago and descended into dementia as the cancer invaded her brain. It’s my deepest wish that my husband stays here in our home through this disease and my deepest fear that he will suffer dementia as the cancer progresses. As long as it’s the two of us in it together I can manage.
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I personally am starting a secret stash of meds to gobble down should the future look too grim. Meaning being locked up in a nursing home or worse an assisted living facility in their “ memory care” section. No, I am not depressed just pragmatic.
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@MoosesMommy Yeah, the issue will be, will you remember and be motivated to take them? Two of my siblings had dementias (FTD and Lewy Body with PD) and our mother had Alz, so this is up close and personal for me. Only the brother with PD would have remembered (some days) and taken the meds. Instead, he took to bed one day and stopped eating and drinking.
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@MoosesMommy best laid plans - twill you remember where your stash is and what it’s for?
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@MoosesMommy Please read "Still Alice" by Lisa Genova or the movie of the same name. The fictional Alice was diagnosed with early onset Alzheimers and developed a plan similar to what you describe. However due to her symptoms she was unable to carry out her plan.
I’ve been working on a video documentary of Altrusa House, an adult day care center in Gainesville, Florida. Among the most heartbreaking stories we heard was from the devoted wife of a former military officer, as she described his five-year descent into FTD. She cared for him alone, isolated and increasingly depressed, until he was finally diagnosed — and she was convinced, reluctantly, to seek respite care for him.
This story will never have a happy ending. That’s one of the most tragic aspects of FTD’s declines. But quality respite care has given her a rare break for personal time to meet friends, go grocery shopping or read a book. Trained staff gently introduced her husband to socializing, mind-stimulating games and activities that helped restore glimpses of the man he used to be.
The letters here illustrate one of the points we heard over and over: caregiving is a terribly painful and difficult task. Respite care is not a panacea, but the caregivers we interviewed urged those in similar situations to give yourself permission to find some respite help. Both of you can benefit.
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@Kat
Your project is important, and is something I would eagerly watch.
Thank you for documenting this; I can tell you are approaching this with care and sensitivity.
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@jazz one
Thank you. This experience has been a painful education for me. I am inspired by the courage i see in both caretakers and the dedicated staff of this respite care center, all of whom give unstinting love and care, day after day, knowing there is no happy ending. I don’t know how all of you do it.
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My husband was diagnosed with FTD in February 2020 and died just 9 months later, which shocked everyone, especially the doctors. It's a remarkably cruel disease, and in my circle of friends I now know 5 other people whose spouses now have or have died from FTD. It's much more prevalent than people realize.
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@RDZ My husband had a pet scan in February 2020. The only abnormality was"somewhat suggestive of PPA". I asked his doctor what that meant, not even knowing what PPA was. The doctor told me that PPA was rare and my husband did not have it. My husband died 5 months later. An autopsy showed he had PPA.
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This article brought back many memories. My husband didn't have dementia but a hemorrhagic stroke in the frontotemporal region of his brain five years before he died. He exhibited almost all of the same signs that the article describes. It was a very difficult and lonely experience to have as a wife and caregiver.
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Does anyone reading this have a spouse or relative who has CBD- Cortical Basal Degeneration? No cure, no meds for this tragic and dehabilitating disease that strikes in the 50’s and 60’s with a double whammy affecting not only cognition,language, memory, hallucinations and loss of executive functioning but motor impairment and loss of motor skills in the hands or other limbs?
This article is a great start. I’m interested in hearing from others currently experiencing CBD with their loved ones.
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@ClaudiaBee Sounds a lot like Huntington's Chorea. Many brain degenerative diseases have similar expression regards motor control and cognition. Many support groups have a mixture of diagnosis but very similar types of physical and social/familial issues where experiences can be shared and good advice gleaned.
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That's hard. I don't know. How could anyone ever judge a person in your position as a caregiver!?! I felt stuck as a caregiver in California, but what you're describing is a heartbreaking kind of nonstop hard. I'm so sorry.
As an asthmatic, who suffered under the Thomas Fire, I'm inclined to direct you away from California in general. This may be my bias. After the fire, my finances didn't allow leaving at once, so I was obliged to complete renovating our home for sale. To do such a thing while suffocating.... Well, even the notorious Bukowski admitted: "We must bring our own light to the darkness; No one is going to do it for us."
As I drove out of the smoke in Nebraska, I realized how impossible my story sounded. Renovate a house while suffocating? How? One slow, awful step at a time. Why? California. Who was he? Another phony superman--no one can do that. It's impossible. My memories of the previous three years proved I must exist, but my disbelief in them taught me the full meaning of my trauma.
From my perspective, your position sounds impossible. That's why I recommend you go and get help. He's taking more than 17 different medications? It sounds like you might need a second opinion: If so, get one. Do not allow the trauma to cloud your point of view on safety. Broken plates, smeared feces and gaslighting are all abuses that can wreck you, Caretaker, without helping him. Stay safe!
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Very interesting article and also all the posted comments. I read them all. Thank you.
Living this journey now, accompanying and caring for my husband whose dementia journey has taken him steadily downhill for nearly twenty years; he’s now 89. I recently got him an updated neuropsych assessment and they’ve added to his previous vascular dementia the label of likely Alzheimer’s too, and then his neurologist increased his Alz medication (namenda) that he’s been on for years along with donepezil and anti-depressant (along with 17 other daily meds he takes for other medical issues).
Not sure why I started with all that. What I am writing to underscore for readers is not just the loneliness but the sheer hell this becomes for a trapped caring caregiver to live through. The loving partner I married is long gone and all the work of the household is now mine to tend. The incontinence is disgusting, shit everywhere, walking in it, smearing it all over himself and the carpet. Don’t use the toilet without cleaning the seat off. The gaslighting conversations that are so senseless and painful. He refuses showers. I come in from walking our dog and never know what latest mess I’ll find— smashed dishes on the kitchen floor, coffee dribbled from kitchen across the living room carpet to his recliner, breakfast spilled down his front. There’s no money for him to go to some sort of assisted living; I’m stuck.
Those who mentioned assisted euthanasia? Out of the question; no legal capacity.
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@Caregiver
My heart goes out to you. I was my mother's caregiver as she went downhill for 7 years. The last 4 being the toughest.
I was lucky as I was able to scrape the money up for assisted living and later memory care and even then, alll of the problems made it exhausting.
Early on, she realized she had memory problems and made it clear she intended to "take a pill" and go but she went downhill so quickly, literally within less than two months, she never had the opportunity. That was the hardest part. This just existing was never what she wanted. There needs to be a way to have it in a person's Medical Power of Attorney.
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@Caregiver
I’m so sorry for what you’re going through. You mentioned your husband is on Namenda (likely useless at this point) plus many other meds for various health issues. Have you considered stopping the other meds? I’ve been a caregiver for my mom with Alzheimer’s for nearly a decade and several years ago stopped the Alz medications along with the baby aspirin and the statin she was taking. Given the prognosis of the dementia there is no longer a need to keep other issues in check. It’s a mercy not to prolong the inevitable. Best of luck to you.
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@Susan Michele Agreed. When hope of a happier ending is gone, why treat all the comorbidities any more?
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Anyone with a loved one with FTD, needs to be aware of government programs that will--under certain circumstances--pay a family caregiver to care for that person. Programs differ by state. Here's one link. You can also google 'family caregiver' to find more.
https://dailycaring.com/getting-paid-as-a-family-caregiver-3-government-benefits-programs/
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This is an excellent piece.
It describes some, but not all, of the agony felt by the survivors. It also describes some of the agony of the victims.
Remember, when a person with FTD gets angry or horny or sad, they are feeling something that is very real TO THEM.
This type of dementia isn't sweet and funny. At all. These victims are usually very unhappy and aggravated people. Living with someone with FTD is a nightmare. Imagine what that woman who hadn't bathed in 5 weeks smells like. Not pretty.
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@C
What type of dementia is sweet or funny?
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@Marcy
None of it is but people who have never experienced a family member with any type, think that having dementia or Alzheimers means they just lose the present and can live in the past. It's not true at all.
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@Marcy It depends on the personality of the person before they were demented. Some were previously ornery and disagreeable and become more pleasant. Others forget about how unhappy and annoyed they were and became happier. The experience is different for everyone, but this stage lasts a short time. Overall, any type of dementia is a grossly unfair state of affairs and people should be able to sign a death wish beforehand if this is likely to be their fate.
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My mother's dementia was a nuisance: she was a loudmouth, a pest, drove all her friends away, she would run us up and down the streets in the worst weather, sent checks to every fraudster, had long conversations with telemarketers, and once even tried to pay a cashier with a TV remote. She would wet her pants and put them on a hot radiator to dry. Eek. And those weren't the worst things she did. Nine years after her death, I still don't miss her. Not yet. I wish I could have killed her lawyer and her doctors and buried them with her. They were worse than useless, and I liked the idea of them spending eternity with her, which is what they deserved.
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I’m so sorry for what you and your Mom went through. Although I had to laugh out loud at the comment on the doctors and lawyers…..
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Suggest the documentary "Looks Like Laury, Sounds Like Laury" that can be rented on vimeo to see what a cruel heartbreaking disease this is.
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For a bit, I worked helping out at an elite old folks home for the rich. In truth, it wasn't an easy or well-paid position, but we did get to improve lives. Then one day, I was told to pick up a woman from the state-run facility. Apparently, once they're out of money (at 6000-8000$ a month), that's where people end up in SoCal.
It was like walking out of Heaven and down into Dante's Inferno for five, rushed minutes. The nurses were scant: something like 2 nurses and 1 orderly for hundreds of elderly. Many diapers were full--a stench everywhere--and more than one person was screaming continuously. My client looked shellshocked by the experience, and complained of bruising by the orderly.
A reprimand was in order, but--and even despite this orderly's callousness--I understood how. By law, he was required to put her on my vehicle--even though I was qualified. Another emergency was calling him from the land of endless trauma, and he was going too fast. Was it his fault he went so fast? He repulsed me, yet who was I to judge? He'd grown callous for a reason: He'd been set up for failure.
I hate to admit it, but I'd rather be dead. I'm sure I'd sleep better under a bridge. My concept of suicide shattered in an instant. The word euthanasia is more appropriate for most cases.
It's more than a bit more humane here in Maine, I'm relieved to say. In truth though, all our elderly deserve the utmost respect and no American deserves this... this awful system.
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Ty, please stop with the bashing of California. Irrelevant. Our state has 40million residents. Of course we have more disease of all types than your tiny state of Maine, far shy of even 2million residents. That is correlation, not causation. This issue of caring for the very, very ill elderly— like all those degrading our fractured country— are national problems, which should be solved at a federal level.
Personally I will pursue suicide at the first sign of mental decline. It will be my choice, my plan, my implementation. I’m not leaving this to my husband or son, who love me as I am now. Nobody who is reduced to the level of these patients, is loved, or has the capacity to love.
4
Here’s an education for Times readers, taking note of debilitating conditions - with a terminal endgame - week in, week out, as far as the eye can see, that, together with the comment section, provides additional instances of the disease. Once you’ve started reading, like a good thriller, it’s hard (near impossible) to put down. Enough already - we all know what’s coming.
8
These caregivers have the hardest, non-stop, full-time, heart-wrenching, physically exhausting, and mentally draining job in the world.
Most of them are older women or younger children who are financially insecure. The accounts below are only the from those able to subscribe to The Times and they are harrowing enough!
The situation for those without care-home options or private help is positively Dickensian.
I think the media should publish much more widely on this health care issue as no group, region or demographic is exempt. It is truly a universal issue and strikes to the core of the vulnerability of all of us as human beings.
39
@Roberta
I couldn't agree more, but I can write to say: "Dickensian" is aptly put indeed!
9
When it became evident to me that my mother was starting on the path of dementia, I researched the symptoms of dementia, discovering that there are many kinds. I knew my mother well and was able to rule out which symptoms did not present in my mother's situation. If seemed, to me, that her condition was FTD, of the language type. The fact that FTD has three types of presentations is not covered in this article. She never progressed to the changes in personality, one of the other types, or to the movement type. She retained her gracious personality to the end. It seems, from my readings on FTD, that the initial diagnosis of FTD is accompanied by which type of FTD the patient has. It was also noted that patients may or may not progress to the other types. In my mother's case, her struggle with language started decades before it was evident that she was on the road to dementia. She struggled to find the right word, despite her vast vocabulary. My mother died shortly before her 100th birthday. It was devastating to watch her deterioration and the helplessness I felt was overwhelming. It will stay with me forever.
30
@Virginia
Remember, we will all die of something.
At 100 there is nothing to complain about.
My mother made it to 83 and she died by asphyxation of her own vomit. Fast, and merciful.
3
I often wonder what will happen to me if I get something like FTD. I have no family, no kids, live alone. I suppose my friends might notice symptoms as they appear, but I think I could be pretty far along in the illness before anyone notices. I don't know what happens to people like me who start to behave strangely, but there's no one to do anything about it. I suppose people will just think I'm a crazy old lady and avoid me. Probably end up in a psych ward after causing a disturbance in public. I have an advance directive stating that I wish for euthanasia if I become mentally impacted, but who knows if that will ever be honored? Some doctor somewhere could think he/she knows best and ignore my wishes, in favor of "life." Not worth worrying about, really, I guess. I'll have little say in the matter when the time comes.
45
Ms. pea
I’m sorry, that’s a hard feeling to live with.There are many of us that are in this
Situation also . Know you are not alone.
I don’t understand why there aren’t more
Options for us all ,
Considering the number of us…. Young
People have so much social media savvy and can organize a “ flash “ happening in an instant……. Maybe we can do that to bring people to help us or have a party together to aliviate the loneliness!!! God speed to you,
Try doing something…. Anything to join some community, any community for
Company….. it would help……
9
@Ms. Pea
"Not worth worrying about, really, I guess. I'll have little say in the matter when the time comes," you wrote.
Is this depression? I don't know. I could be projecting: I certainly was depressed the one year I wintered in Seattle, 96-97. If I could go back, I would have gone to a tanning booth, bare minimum. I didn't even know about vitamin d back then. I also lived alone... much too alone, and not in a good way. Worse, I had a broken jaw and a limp from pushing myself too hard in Alaska. Even my friends called me "Toothless in Seattle." Now I can laugh. By the time I saw daylight, it was like "The Wizard of Oz" or something... but I was no Dorothy.
Your words could also be enlightenment.
My Grandma would have said, "It doesn't do to dwell on these things." That was how she'd handled the Depression and WWII, and all other matters that she'd whisper: "Just won't do at the dinner table." Then, she'd smile and wink, as if such subjects were in fact marvelous jokes I would discover later. As you put it, "... when the time comes."
7
Ms. Pea I am in the same situation. No kids, parents are gone and only one sibling left who lives far away. I purchased a long term care policy but if I have dementia I do bit I’d remember I have it. I, too, have an advanced directive but if the doctor doesn’t see it or chooses to ignore it….these are the things that keep me up at night.
7
I have a friend from law school who's a judge. Her late husband was a lawyer and she almost divorced him before he received his diagnosis. As bailiffs in her courtroom reported to her, he was overheard telling his clients that they didn't need to worry about the results of their cases "because my wife's a judge." (Needless to say, he didn't have any cases where he appeared before her.) He also became sexually improper, making public comments/gestures that were excruciatingly inappropriate. A true nightmare.
12
My Mom, too. The gerontologist said she was depressed and gave her medicine, then he increased the medicine, then he sent her to a counselor. which humiliated her because of the generational differences and condescension that she experienced. I finally confronted the Gerontologist about his diagnosis asking him if he was actually board certified to diagnose depression pointing out that the maximum safe dosage plus talk therapy had made no difference over a period of months. It turns out that he was concerned about the amount of difficulty he would have getting the Insurance company to pay for a neurological consult. He was her primary care physician in her HMO. Could there have also been a financial consideration?
28
@billionairescosttoomuch
The financial consideration angle is real, but seems unlikely in your case. Fighting to see a neurologist takes about six months under Kaiser.
This is outrageous. The reasons appear due to bureaucratic decisions that straddle the line between law, insanity, and the doctors who treat them. Also, there are few neurologists, because it's no easy field.
Once, I helped a demented patient, for instance, who didn't believe he was demented. He was "just old" he said, and his "evil son" had him "put away" in the most elite, expensive old folk's home he could find. It almost added up in my mind: he'd just about snookered me.
Then, one day he finally asked me to take him to Amsterdam. At the age of 93, he'd decided it seems to buy me out, to bribe me somehow with a free trip, and all so that so he could see one last pair of breasts. In retrospect, the fellow wanted help--morally and physically--in dying. He wanted to go out with a bang.
In this, I couldn't help. Was it such a terrible thing to request? Breasts? Just once, before you die? How could breasts be unethical? I had to laugh.
I promise you that at least one demented person has fooled at least one judge about at least one neurologist. That's all it takes for the great meeting of bureaucrats to occur--between law, and medicine, and family--about dementia. What could be slower?
It's not right. You and your family deserve better, and my heart goes out to you--that's hard.
12
My late husband was diagnosed with both ALS and FTD at the same time. In retrospect, I think the FTD was around at least two years previously. He started to say strange things and make slightly inappropriate comments about people’s appearance. But I was spared the personality changes that so many FTD suffers had. And in some ways, the FTD protected him from understanding the devastation of the ALS diagnosis. He was unable to process anything new and it was a disease he had never come across. It was heartbreaking to see a wonderful, articulate, interesting man disappear into someone who could only watch game shows or cricket matches. His children, who lived a 1000 km away, thought I was wicked when he finally had to go into care but someone had to work to pay the rent. I am eternally grateful that we are in NZ which provides heavily subsidised residential care. If we’d been in the US, we would have been living on the streets.
80
My husband was diagnosed with ALS 4 years ago, but there were symptoms for two years prior. With that, there were symptoms of FTD. Both are progressing slowly but to lose him bit by bit physically, functionally, and mentally is beyond cruel. It's also cruel that there is no help financially with caregiving unless you are a veteran or very poor. The rest of us get to spend our lifesavings, out of pocket, for help. The life of a caregiving spouse suddenly becomes that of a ghost.
60
@Laurie
My wife died of ALS. 3 years, exactly the median.
No FTD, that made it only more cruel for her. She was fully aware until the end.
3
So much of this rings true. My father had this type of dementia. He spent his last two decades obsessively rewatching favorite tv episodes, lining up rocks in the yard, and compulsively engaging in sexual relationships with multiple partners right up until the bitter end.
18
This is the first mainstream article I've read about FTD, thank you for increasing awareness and compassion for those suffering and for those caregiving. I became a caregiver in my low 20s for my mother who was mis-diagnosed with depression, hormonal imbalance, and Lymes disease, before her docs agreed to an MRI that identified black space where her brain should have been. She was years along her FTD journey.
Maybe because she was otherwise healthy, it was a 15-year timeline from diagnosis to death. These years were relentlessly filled with slow and continual loss. Loss of common sense and behavioral norms. Loss of hygiene. Loss of words. Loss of memory. And then loss of muscular control.
Because she looked physically the same on the outside, her brain degeneration was confusing and frustrating to friends and family members who thought that her increasingly offensive behavior was somehow a choice, not biological. When she was unresponsive to their bribes, threats, and other strategies, they abandoned her. Her church also abandoned her. They abandoned us too, her caregivers.
This intentional shunning, familial, social, and spiritual, was heartbreaking and 20-years later, is still unforgivable.
Her eventual death was truly a blessing. She died "naturally" though if there had been any legal option for assisted suicide, we would have taken it. I know that's what she would have wanted.
109
@youngandold My words exactly. I'm the primary caregiver to my wife, 76 years old, who was diagnosed with FTD 6 years ago.
Regression was slow at first, but the last year showed more substantial changes; Obsessive/Compulsive behaviour, lack of focus, apathy.
Friends walk away, as they don't know how to deal with her as she has no ability to converse. Her church was her life, but the congregation and "management" have made no attempt to connect, using Covid as an excuse - very sad!
FTD is a slow death.
43
@youngandold My mother also lived for 15 years after her diagnosis. Her primary care MD prescribed an anti-depressant, but it was obvious that wasn't the issue (she said so herself). I took her to a neurologist in Manhattan (I'm lucky to live on Long Island) and he immediately diagnosed her with FTD. It's like a death of the person you knew. My children and I moved into her home and cared for her until she finally died due to sepsis. At first she was in a hospital, but then they transferred her to a nursing home, where she lasted a couple of weeks. Her quality of life was so poor at the end, I too wished there was a provision for assisted suicide. It would have been the kinder thing to do, for everyone.
22
@youngandold The husband of a friend of mine committed suicide while there was still enough of "him" there to be aware of what was happening to him. Beyond tragic.
16
Very interesting article. Do we know the statistics for this??
Memory loss is part of the aging process.. So can be changes in personality.. ( in a much less exaggerated manner but none the less). (Which is why some of us think there needs to be a retirement age for everyone in DC)
Part of getting one's medical education in life. Thanks.
11
My mom died from a neuro degenerative disease after 11 years of suffering. It took years to get a diagnosis and FTD was one of the ones considered. Her diagnosis was finally Cortico Basal Degrneration (CBD). There was no brain autopsy so who knows what she really had. I’ve lived in fear of this disease for years and at 73 have signed every document I can so I won’t be kept alive under similar circumstances
It was a horror for all and destroyed my dad who although he lived for several years after her death in 2006 was never the same.
44
I feel for you as my 65 year old sister was finally diagnosed with CBS after many years of subtle personality changes. This form of dementia consists not only of Alzheimer’s like symptoms but in addition, motor symptoms, falling into the Parkinson’s type motor disorders family. A double whammy with dementia and loss of motor functioning. Right now she has no use of her left hand and operates with only the use of her right hand, loss of vocabulary, word retrieval issues, poor judgement, anxiety and declining executive functioning. I have not yet met anyone else who has been diagnosed with this. With no children, no spouse and denial that she needs any assistance, Irish becoming increasingly difficult to care for her. I’m interested in others not going through this rehabilitating and rare disease.
3
Thank you very much for profiling this disease. I movedout when my husband refused to end an affair and was unexplainably callous towards me. He was behaving uncharacteristically, a symptom of FTD. Our marriage was wonderful but our divorce was a nightmare with a person with zero empathy sitting across the table from me. Unfortunately he didn’t get diagnosed until after the divorce. If I had known this behavior was attributable to a disease, I never would have left.
To help others avoid my fate, I started leading a support group a few years ago. Every person who has joined the group is caring for someone who was initially misdiagnosed. They had to go to major health facilities over an hour a way to get a correct one. Some nursing facilities who say they take dementia patients are unaware of FTD and kick the patients out after a short time because they can’t deal with their ‘gregarious’ behavior. I am still shocked by how many neurologists and others in the geriatric care field are completely unaware of FTD. This has to change.
As for the caregivers, since this disease is common in people under the age of 60 (I had people whose loved ones had FTD in their 30’s and 40’s), people are forced to eat away at retirement savings and have trouble working, caring for their loved ones— wives, husbands and children—and affording care. There has to be more help and support for caregivers.
By the way, the Association for Frontal Temporal Degeneration is a wonderful resource.
82
It can be very lonely for caregivers.
I’ve been close with my mom for years and began taking care of her in my thirties when she was diagnosed with dementia. I noticed the short-term memory loss. We don’t know what type, but I don’t suspect FTD. It seems like it might be vascular. Her interests and personality all seem the same, same anxieties but more pronounced when I’m away at work. It’s been about 3 years, and family is not very helpful or doesn’t seem to comprehend the seriousness of it. She takes donepizil and her BP meds. I package them for each day, labeled with the date, and have a digital calendar hanging below it so she takes her own meds daily. So far, so good.
I think the only thing that really is stressful is whether I will get to have children of my own.
35
Years into this with my own mother, though hers doesn’t seem to fit with FTD or vascular dementia. Still, it’s long and it’s hard. No answers here, but much empathy. I’ve already decided I don’t wish to live past age 75, maybe 77 at the latest. What looms beyond that looks ugly to my eyes and I want no part of it. I’ve already lived it, am living it right now. Once is enough.
36
@Reader I am so sorry. You are losing so much.
14
@Reader
I’m sorry. Please have your own kids, if you want them. Don’t let your mom’s illness derail your own future.
23
There is not simple way to determine what form of dementia a person has: Brain scans can point to what areas of the brain are affected but that is not definitive. The sole way to diagnose the dementia condition is an autopsy on the brain after death. I mention this because we had one Dr diagnose my mom as FTD and another disagreeing with that diagnose with no final conclusion reached. As her dementia progresses we think it is not likely FTD but another form of dementia since her memories are not intact. Also worth pointing out that diagnosis sadly doesn't matter because there are no Rx or treatments for any form of dementia that actually work. The article is good but it evades much of what I said above and I am not sure why it doesn't talk more about the persistent problems with dementia diagnosis.
35
My mother had dementia, but her MRI was inconclusive, or maybe they lost it and couldn't be bothered. They said it was normal (I've been getting that during 7 years of illness myself, despite red flags on bloodwork.) She never got a diagnosis. They threw some useless drugs at her that only made her worse.
3
My nephew's mother-in-law suffers from Frontotemporal Dementia. She was diagnosed at 67 but personality changes began to appear years earlier.
She is now 71 and living on the memory care floor of a seniors' home. Her decline is steady. She (usually) recognizes her adult children, but she doesn't recognize her grandkids and is in no way charmed by them. She greets her daughters by saying, "Who are you?" And then when the names come to her she'll say, "Go away!" But they sit with her in silence while she watches episodes of 'Grace & Frankie' over and over. The total lack of attachment to her family has been emotionally devastating for them. She recently began saving her own body waste in bags. It's a terrible disease.
45
A horrible and emotionally painful disease…
As my dad lamented 30 yrs ago, about my mom’s early-onset Alzheimer’s diagnosis: “I wish it was cancer… at least we could put up a fight against that”
56
This is opposite bookend to the child care crisis. We all will die and many will require significant care in the years prior. All families need help at some point and that our society likes to paint such help as socialism and an impediment to personal freedom is depressing.
98
My husband died from FTD in January 2015. He was sick for over 3 years and had primary progressive aphasia. He was a drug and alcohol counselor but once he was sick no one came to visit him. I was his caregiver.
I had a very hard time finding any competent medical care. They never heard of FTD and one neurologist said it was my fault he had difficulty speaking as I was stressing him out.
I worked in the mental health field and when I told people what he had they never heard of it. I couldn’t believe it.
I still can’t get over how people said things like “he’s in good health except for that.” Really ? The brain is the most important organ and if that doesn’t work nothing does. On Christmas Eve 2014 my husband had a stroke from all the brain damage. He couldn’t shallow well and he no longer could absorb nutrients for about a year before this. He was so thin. He stopped eating and died about three weeks later here at home with me and hospice. Today I was in a store and heard Christmas music. I felt sick after all these years and left.
109
@Maureen Walsh Your post brought it all back to me. My wife had FTD, and it took years to even figure that out. The neurologists were happy to study her condition, but had nothing to offer to ameliorate it. The loss of speech was, perhaps, the worst thing. She lived in a communication vacuum for several years, although still the dearest of companions to me. I so wish I could have helped her more.
39
@Maureen Walsh I am sorry for your experience. You are a secondary victim of this disease, and this is PTSD. I hope that you can find a good counselor well versed in treating PTSD to help you rediscover the peace and joy in life that you truly deserve.
11
@Maureen Walsh
I grieve for the experience you've had. May time bring healing.
7
Some lessons from someone with a family member with FTD: Alzheimer disease seems to get most of the press, but FTD is different and as important. As much as it is important to have the diagnosis, it is necessary for families to understand the possible trajectories of FTD. It is necessary to plan for the contingencies, especially protective institutional care. One of the most harmful aspects of dementia is when family members look back and ask whether they should have done something differently, that somehow they could have changed the trajectory of the disease. People need to understand that dementias in general have a timeline of their own, and these may be hard to discern. Finally, when a person does not have good financial resources, dementia care options are often few and commonly unpleasant.
59
@Jeff and Mary
I’m familiar with that dynamic as well. My mother died of Alzheimer’s, and her sister had FTD! My aunt was originally given a bogus diagnosis of “adult onset bipolar,” whatever that means. I’ve heard variations of “if only she’d been diagnosed earlier.” Sorry, it’s not like some cancers which if caught early can be cured. There is no cure, only horror.
21
There must be so many forms of dementia, because my mother never even got a proper diagnosis. Some said Alzheimer's but it definitely wasn't Alzheimer's or FTD, and I wonder if it was brought on by a heart attack, by all the drugs they dumped on her after the heart attack (she briefly improved after she tossed all her medication) or by mini strokes. The MRI was inconclusive. We will never know. She was still walking and talking a few days before she died.
8
@Stephanie Wood There are many many forms of dementia-dementia is a catch-all name for these memory disorders of the brain. The only way to truly diagnose is to have the brain studied by autopsy after death and this can be very helpful for both research purposes and to the surviving family who can benefit by learning whether this appears to be something hereditary. It also helps give family some closure as to what was going on, speaking from experience here. The best way to accomplish this is to plan for it before the person with dementia dies. Good resources for this planning can be found on the Alzheimers Association website (Alz.org) and typing Brain Donation into the search box.
10
My sister was diagnosed with FTD at 62. The decline was rapid - she went from being an office manager in February to being a psychotic 2 year old in December - less than a year. Her son and I spent that time in a daily struggle to find care. She couldn't stay at home or in a nursing home because she was strong and unpredictably violent toward the Alzheimers patients. She spent time in psych wards, and the psych meds had little effect on her. It was unbelievably cruel as she was terrified and had no idea what was going on.
She continued to decline and finally went to a nursing home where she died - 22 months from onset, in 2007. I tell this here because after autopsy and brain studies were done, we learned a year later that she had Creutzfeldt-Jakob disease (CJD) (mad cow) idiopathic - not genetic- meaning probably not food-borne, of origin unknown. She lived much longer with it than most CJD patients, so the diagnosis was unexpected.
Early on, though, the Director of the first nursing home she was in had told me that my sister had the same behaviors she had seen in another former patient who had CJD. Scan results of my sisters brain at the time had not confirmed that, and the diagnosis was still FTD at the time she died.
We were lucky to find an advocate for her - a woman whose husband had FTD and who ran a support group. I am forever grateful for her support.
60
I knew one patient with CJD. From first onset of any symptom to death was just four months. It was incredible to watch a 67-year-old healthy, vibrant man deteriorate so quickly. From his experience, though, I decided I’d welcome CJD with rapid death over Alzheimer’s, with death only after 15 years of suffering, any day. I’m sorry for your sister and sorry for how hard that all was for you all.
29
My sister spent an entire decade during her 50s struggling and in horror from this devastating disease. So glad to hear that some research is getting close to helping those who suffer.
25
My husband had left frontotemporal dementia and died in 2019 at the age of 76. He had fallen from a jungle gym at the age of 8 and had a concussion on the left side. There are a lot of different problems affecting the brain in his family. He had PTSD from Viet Nam and lifelong insomnia, nightmares and headaches. He was a serious athlete and had started the "carbo loading" thing in the '80s. Carbohydrates metabolise as sugar and cause insulin spikes that damage the brain. I believe all of these things contributed to his condition. I was fortunate that he didn't have serious personality changes and remained his sweet and kind self until the end. That said, I would not with this disease on anyone.
29
There are many single people in today’s world. People who have neither children nor families to help if such a disease were to manifest in them. I think it’s unfortunate that the article focuses on mainly caregivers and those who are fortunate to have others to look out for them.
68
Some of us singletons will simply choose to die earlier, assuming that we retain the wherewithal to achieve that. I have zero expectations that anyone will care for me, nor would I wish that nightmare onto anyone I love. Who would, really?
22
@Kim You wrote : "There are many single people in today’s world. People who have neither children nor families to help if such a disease were to manifest in them."
This is only one of thousands of reasons for the Affordable Care Act ("Obama Care"). And even that is a feeble bulwark against all the misfortunes nature and our biology throw our way.
I just wish that people would think very deeply about the fathomless number of ways that political "conservatives" (let alone the Trump crowd) degrade our lives -- all of us. They degrade our lives in big ways and small. Ways like opposing access to high quality healthcare for ALL of our citizens. And I wish that people would then vote accordingly.
25
@Iman Onymous I'm mostly conservative, but I agree completely. Our society deems education a right. But health care is even MORE important.
9
Is this somehow related to alcohol consumption?
8
@Pat Mcgowan johnson
No. Probably not. That would be alcoholic dementia; part of a whole-body disease. Chronic alcoholism progressively degrades the entire body; and malnutrition isn’t incidental to the condition, which is untreatable and irreversible. This frontotemporal malady (what it is) appears to be genetically driven — an age-triggered inherited predisposition that presents behaviorally.
20
My friend's mother was an alcoholic and smoked, rarely worked, has COPD and is sharp as a tack at 87. My mother, a healthy vegetarian, walked every day, worked until 63, never smoked or drank, and wound up with a serious case of dementia.
18
Wonderful, almost spot-on, article.
A few items I quibble with.
"Today there is hope." There is hope for tomorrow's patients, but no realistic hope for anyone diagnosed today other than managing the tidal wave of changes.
FTD is often, not always, diagnosed in people in their 5th or 6th decade. It can hit an adult at almost any age.
FTD can last a lot longer than 10 years, and also be quite quick. The timing is virtually unknowable with any certainty. This makes planning very difficult.
A main theme in this fine article is the loneliness of the caregiver. Caregivers must do their best to overcome hesitations to reach out. Creating a regular bit of space for oneself is essential for the Caregiver and their Loved-One.
63
@RnA My mother was diagnosed at age 70 and died at 85.
16
@RnA Another missing element is getting outside care. When my mother had advanced dementia (not FTD), I used her assets to provide the best care I could get, which included living in a memory care facility once she needed more help than I could manage. She had enough assets for about two years of care. I knew that if she lived longer than that, she would have to fall back on Medicaid.
People providing long term care for family members should investigate this option. The rules have changed in recent years to make it possible for a community spouse to live relatively comfortably. Children can provide care without impoverishing their own families. Lots of hoops to do this, and care must be taken to vet the care facility, but there is some help available even if not deluxe.
6
Indeed, FTD is a horrible disease to suffer through. My dad passed away last year after having it for a decade, and it was galling to see his judgment destroyed bit by bit, when he'd been a judge. He was going to retire and write books, and enjoy a relaxing time in his country home, and instead he had his mind slip away over ten years. For awhile he was obsessed with saluting every flag he saw, and telling people stories about made-up violent exploits of his youth, but eventually all language left him, and he had nothing left but a worried, uncomprehending expression.
I do hope there's a way to slow the disease's progression, or even halt the damage someday. But if I were diagnosed right now, I'd be looking to get my affairs in order and then do progressively risky things until something killed me, rather than have to put everyone around me through the gradual dissolving that the disease inevitably brings about.
111
@Dan Stackhouse I am so sorry. I have a parent going thru something similar now. She is making up stuff in conversation because her memories of real events are mostly gone. But she wants to feel like she has memories to draw from like everyone else. We simply listen to her "stories" many of which are bizarre.
24
I mean in no way to be disrespectful, but I cannot fathom why “slowing the disease’s progression” is a good thing. For me, with a mother with dementia (not FTD or CJD) prolonging this process is a horrific thought. We’re already at the 10-15 year mark.
27
@PJ
This raises the question: How many with any of these forms of dementia really wish to live?
My advanced directive does not explicitly deal with the endings described in the article or comments. It probably should. The focus of the directive is on avoiding desperate attempts at resuscitation, not mental decline.
There would seem to come a time when life is not worth living--and certainly not worth the ongoing damage to a partner's life. My father, with advanced Parkinson's was able to make it clear that he did not wish to eat, and certainly not wish to have a feeding tube rammed down his throat. Fortunately, my sister is a visiting nurse and was able to convince those in the nursing home that they needed to respect his wishes.
This country does end of life very badly.
29
My husband has the diagnosis of FTD behavioral variant manic. It took many years to finally settle upon a diagnosis. We saw easily 30+ clinicians (neurologists, psychiatrists, psychologists, occupational therapists, family physicians, a range of counseling therapists, etc., etc.). But I was the one who initiated treatment when he became acutely psychotic ten years ago. He continues to take a low dose of antipsychotic and that controls the mania. That's the only treatment for him. He does not have the genetic mutations. And if you are wondering, I'm a medical professional. I also did a huge amount of research to learn about neuropsychiatry in the past 10 years.
However, I've come to the conclusion that in fact, although he has a slowly progressive dementia which mimics FTD, he really has brain damage from lifelong schizoaffective disorder, manic variant which is a type of schizophrenia. The signs/symptoms completely overlap. He was able to "compensate" (mental health jargon for behaving normally) until he was in his 50's. But in retrospect he's always been an odd and difficult person with some paranoid ideation and poor social skills. After 50+ years of observation I'd say he's always been this way except he no longer has the same personality.
Alas it has also become apparent that our son is a paranoid schizophrenic/schizoaffective who was also able to compensate until a few years ago. This is obviously an inherited familial problem. I am devastated.
148
@Ahominid
I am so very sorry to read of these twin sorrows.
In some ways it is better to be "in the business", and in many ways I am envious of those with no medical knowledge whatsoever.
33
I am so sorry.
51
Extreme anxiety and full paranoia and moments of mania are not unusual in advanced dementia but if he has always been like that in his life it may not be dementia just as you say.
7
My parents generation are slowly moving on, but most live into their nineties, which is happening NOW. However, for decades behaviours on the male side of the family were puzzling. My uncle would project mind reading and it's intent onto other drivers, my other uncle would sabotage any sales deal I brought him if the buyer was a women, and dad?, the third brother? He'd loan money to strangers and come up with the most preposterous stories to gaslight his oldest, me, and his only grandson received a grand total of 600. Cdn. for University. But he basically GAVE away after signing fraudulent documents almost two million US dollars of the "family legacy" or "mom's money". Something was amiss. My parents generation was largely rural until after WW2, so we didn't exactly have access to the Univ. of Whatever (or the internet) to try to put a handle on this stuff. We'll never know, but something was going south.
32
I rarely read of impacts on caregivers in non-traditional family models. As a second wife who was never fully embraced by children of the first marriage, I feel completely alone. I look at extended families at a similar point in this disease progression who are very involved, loving, and kind with longing and despair.
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I understand. I got along with my stepsons since I met my husband when they were young, 10 and 13. When the dementia forced him on to disability and with his gradual loss of skills, one became distant and the other expected me to be like his own wife, sacrificing and religiously devoted. We’re all estranged, and my husband is in a nursing home. I’ve gone on with my life without their support except for my dear step-granddaughter who is a teenager. Take care of yourself.
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Thank you for your kind words and for sharing your experience that sounds so familiar. Your dear granddaughter is a treasure.
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As a 2nd wife, you have my sympathies. There must be a support group. If there isn't, maybe it's time to start one. Half of all marriages end in divorce and a large number remarry. Why we still have to go through this nonsense alone is beyond me. As in many cases with women, we aren't important at all.
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I know a lot of older people who are in cognitive decline... and reasonably young people with broken brains I am sure will lead them into a netherworld of confusion in the years ahead.
The river will turn into a flood with the march of time and demographics: the least healthy generation in American history have been dining on bad eating habits and alcoholism for decades and they are losing their marbles at an astounding rate.
Gird yourselves and remember compassion. The crisis will be here and everywhere and appearing in people you least expect.
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@W.B. alcohol and various drugs and smoking. And it's clear the men go first, for whatever reasons. I'm in a fabulous community, with a very large retirement demographic and it's right in front of me. Look like my volunteer "career" will always be in demand around here.
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Not too familiar with the hard drinking, smoking everywhere including at work, at home, on airplanes and in restaurants, red meat at every meal generations that came before? Can we all just stop with the health shaming? It’s a bore and despite what you think actually doesn’t make you superior to others, or protected from illnesses like dementia.
Research has into slow-moving brain diseases like Alzheimer and FTD is severely hampered by the lack of in-vitro models or in-vivo sampling.
I wonder if a generation or two of patients would undertake great personal risk to speed up cures for later generations.
Is anyone discussing this? Who and how?
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@Friend Highly unlikely any ethics board would allow a study that samples brains with no upside to the study participant. Can't imagine that this could be funded.
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@Friend They don't have the capacity to give consent.
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This article is enlightening, but, until we have universal medical care in this country, I feel like either the problem will mis- or under-diagnosed or the drug progranulin mentioned here will be $1000s per month. I also expect more mental health issue being drawn by the spouses and caregivers like Ms. Karger is experiencing with "progressive mourning" and the problem will just be misunderstood or forgotten by those who lack empathy or at least a measure of respect for what someone else is going through.
Do I have a dim view? You bet. This pandemic has taught me volumes about the supposed values and priorities of this country. And they aren't benevolent.
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@Hmmmm Total agreement here.
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This info needs to be more widely spread among the medical community. My mother had a form of this dementia and doctors, including a neurologist, kept giving her a ridiculous memory test asking what month it was and who the president was and other such questions. She would pass those with flying colors, doc’s would say she’s fine, but then rip all her clothes off and run up and down the hallway at her senior living center and other out of character behaviors, too many to recount here. I considered those doctors unqualified but was given little to no help finding treatment for her. After 5 months in memory care during COVID when we couldn’t visit her in person she died in March 2021. She was done with living. She left behind 5 broken hearted children.
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@Diane Saunders I"m sorry to hear about your experience. A good neuropsychologist could have contributed quite a bit to the diagnostic clarification, but it doesn't sound as if a referral was made. The mini exams done in a doctor's office are for screening only. They do not contribute much to a diagnosis. A full neuropsychological evaluation would have pin-pointed the deficits in frontal lobe functioning and probably helped you to get a diagnosis much sooner.
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@Nancy
Agree, as a neuropsychologist, I see many patients for a thorough cognitive assessment, referred by cognitive neurologists. Often for clarification of cognitive profiles related to dementia differential diagnosis.
Yes, MMSE or MoCA or similar screens may not be sensitive to FTD, but any well trained neurologist should have considered the diagnosis of FTD from a good history from family members and descriptions of out of character behaviour, etc.
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I tried the neuropsychologist, he was very sweet, but he gave her medication that made her so much worse; that's when she dragged me into the middle of a busy intersection. I could also say that maybe she had come to her senses and was trying to commit murder-suicide; unfortunately my stupid instincts saved both of us. I now think that was a mistake and she was probably doing the right thing for both of us.
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Informative essay but the author describes the "loneliness of frontotemporal dementia" as the loneliness of caregivers. I imagine those declining with this kind of dementia are also lonely: lonely for their former selves, lonely for their former lives, lonely for the language that allows each of us to make sense of our lives and experiences, and eventually just lonely and locked away by the disease. How much are sufferers aware of each loss? No one interviewed addresses this question and I wonder if we even have an evidence-based way to know. We seem to assume that dementia patients lack all understanding of what's happening to them and I hope they do. But what if they don't? Doesn't their loneliness deserve as much attention as the loneliness of their caregivers?
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@MysteryDancer To answer your question: Yes and no. It's very likely the dementia patient is unaware of that feeling – loneliness – because their ability to be aware of that has been destroyed by the neurological decline.
My wife has FTD, diagnosed in 2016. Her daily demeanor is a general happiness. She hugs everyone who stops by. Myself, this is the loneliest thing I have every experienced and I grew the mocked fat kid in the neighborhood.
I can't speak for others, just myself. Your observation is much appreciated. However, sitting in the on-deck circle for widowhood is lonely, so lonely that I actually cast my mind to those soldiers who landed at Normandy and made it home: they just kept going and survived; or holocaust victims who survived to pick up the pieces. Forgive me, but I think of their abject, horrifying experience to find something worse and connect to stories of survival.
That's how lonely it can get. Caregivers somehow become invisible, after early exhortations by friends and other family to "take care of yourself because someone now really depends on you." No one who knows us these days asks me how I'm doing, only my wife. There is an assumption the caregiver is indefatigable. We're not. Not by a long shot.
It is very real and FTD/all dementias should absolutely be viewed in the context of patient and spouse/family, especially if those family members are caregivers.
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@MysteryDancer My husband has the kind of FTD related to ALS. It does not affect his intellect, but his balance and he has tremors. This former athlete now hardly walks and is exhausted all the time, sleeping a lot. But his character is the same, he is still lovely to me, and his chess ranking keeps going up, now that he plays on-line chess all day. He also has vascular dementia with short-term memory loss. He is very aware of all that is happening, and is intentional and strategic about how to manage the daily drops in function. So far, so good.
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Your comment is spot on, Wallyman. Not only are you the caregiver subject to excruciating loneliness, but you are more likely to become ill yourself, due to the stress of caregiving, than you would be had your wife not become ill.
Respite care is critical for your well-being. I'm not going to address all the financial aspects, other than to say if you can afford help, hire it. On a regular schedule that you can count on.
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Thank you for this article. Especially timely for me personally, as my mother just passed of this last month, at 77. She was diagnosed about 4 years ago, although signs were appearing up to 3 years before that. Her last 18 months were spent in a memory care facility where she received excellent care. Her husband and my sister are both doctors, so my mother never wanted for top care and attention. But despite all efforts, all we could really do was keep her safe, comfortable and physically healthy. There was no stopping the decline otherwise. For the last 15 months she did not recognize me, her oldest son. I now wonder if I have an obligation- to my children and myself- to have myself tested as well. I think I would rather prepare us all (at least emotionally) for the inevitable outcome, if necessary, rather than subject my family to the years of speculation and confusion that we just endured.
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What are the causes of death in those with FTD, since I often read someone being diagnosed at,say,39, living five years after diagnosis?
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Generally, if someone gets FTD in their 30-40, it’s most likely genetic. The earlier they get it, it seems to move faster.
However, in the general population, it is hard to identify. My mother died of a form of FTD called Globular Glial Tauopathy. Her clinical diagnosis was FTD. It took at least 5 years to get that diagnosis and she saw doctors (neurologist, psychiatrist,psychologists). She was diagnosed (finally) in 2017 and died in 2019. Her symptoms began appearing in 2013, but were minor.
Family is generally not involved until it gets bad.
Her autopsy was generously provided by Mayo in Jacksonville where we donated her brain for further research.
Her form was sporadic.
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My dad was diagnosed with FTD at the age of 90 and probably only because my sister and I pushed his doctor to have him examined by a neurologist. We gave him a written summary of all the symptoms we had been seeing for several years and through imaging and other tests the diagnosis was made. Like another person commented, he had no filter and would say hurtful things especially to me, his caregiver. He had obsessions and compulsions around food and his bowels, so much so, that he went from 170 lbs to around 100 when he died 3 years later. He was seen by a geriatric psychiatrist who prescribed an antidepressant which helped his mood. He was aware of his declining abilities as we had to restrict many of his activities like driving or handling electric tools that became dangerous. In the months before his death, he asked for us to give him something to end his life. He said these things not in a sad way but grateful that he had had a full life and was ready. He was a lover of the outdoors and his garden and once he was not able to engage in his usual activities he saw no reason to go on. Sadly but gratefully he was bedridden for only the last 2 weeks of his life. If Dad's illness was genetic I'm not sure. His parents died young of other causes. I'm not sure I want to know if I will suffer the same fate as he did.
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@Margaret
I'm sorry you went through that. Respectfully, I would suggest you find out if you are genetically susceptible because there may be treatments to slow the progression.
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My father was diagnosed with frontotemporal dementia at 63 and because it was centered in the area of his brain that controls speech he lost the ability to speak very early. We realized as time went on that the OCD behavior he'd been exhibiting in his 50s was likely this disease beginning. He was like a child and lived for 10 years, bedridden only at the end. He had been a very bright, energetic, optimistic person. It is a long, sad, confusing, unreal way for a life to end.
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@lourad
We should all have Advanced Directives and support Medical Assistance in Dying (MAID) in our state legislatures and document our wishes regarding VSED (Voluntary Stopping Eating and Drinking) while we are mentally competent. After symptoms appear, it is too late.
2
My husband was diagnosed with a varient of FTD nearly a decade ago. The problem is he was also an extreme narcissist and, perhaps, psychopath even before his illness which he was motivated to try and conceal. He cannot or does not care about earning a living, ruining all my hopes and dreams, and worst if all, his complete indifference to the very real needs of our 19 year old at college - from tuition on down to small hurts he causes. His wanton behavior consists of such arrogance and belittling of me and my attempts to help him manage. And yet he still can turn on the superficial charm and “perform” on cue - in front of the doctor or anyone. He’s plowed through money we don’t have because he believes it is his right. He lies and cheats and steals from me and everybody. His best friend in the whole world died and all he fixated on was stealing clothes and money from his dead friend. It’s this combo platter that makes me 1. Question the FTD diagnosis and 2. The progression of this disease has not followed the typical timetable. 3. In 2004, he carefully hid from me his expenditure and subsequent purchases of $100,000 of numismatic collections and low-worth antique books. The lying and duplicity never stops. When I ask what about our rent and don’s tuition he merely shrugs his shoulders.
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@Umi psychiatric prodromes are typical in FTD and can begin as early as the 2nd or 3rd decade of life. All of what you are describing has been reported in the literature. It is a progressive neurodegenerative disease that often begins with psychiatric manifestations before it devolves into dementia. As a genetic counselor, I would urge you to speak with an expert. Sometimes having an understanding of the root cause of a disease can help you separate the behaviors from the person.
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There is a legal remedy for someone in your situation and it's called divorce. You can still continue to care for your ill husband after you've protected your remaining assets, if any, and made certain that your financial future is no longer subject to the manifestations of your husband's disease. it's a hard thing to contemplate but being beggared by your husband in your old age would be even worse.
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@UMI
You need to leave. Run.
34
It's always gratifying to read of dementia diseases that are not automatically ascribed to Alzeimer's because it cautions families not to panic. I have read about 5 or 6 causes of dementia some of which can be treated with a modest degree of success. An ounce of prevention may not be possible but the stress of extreme overreaction can be lessened.
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Alzheimer's disease is a form of dementia. Dementia is an umbrella term. There are a variety of types of dementia, vascular, FTD, Lewy body and Alzheimer's are all types of dementia. Dementia, by itself, is not a diagnosis.
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Dementia is not curable. And a dementia diagnosis is a reason to panic. What ounces of prevention? It’s “theories” like yours that blame thee victim.
23
Really? My mother didn't have FTD or Alzheimer's - but I have never heard of ANY form of dementia being treated with "a modest degree of success." Dementia treatment is the medical industrial complex's total and complete FAILURE - or maybe they want to fail, because they make more money that way.
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My husband was diagnosed with FTD at 58 and then also with ALS at 70. He died when he was 72. Should my 4 children get genetic testing? My oldest is 52
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@Rhoda Peiken you could consider genetic testing for C9ORF72, which can cause FDT and/or ALS in different members of the same family.
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@Rhoda Peiken
Yes. I think genetic testing is in order. It may ease their mind, or open doors to studies and prevention.
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@Rhoda Peiken Predictive genetic testing is a highly personal decision, a decision that can have far-reaching and unforeseen consequences. A genetic counselor can help advise one of the pros and cons so that you can make an informed decision for yourself. It is not something that should be decided for someone else. Research has been done on the psychological impact of predictive testing for Huntington's Disease (HD), a genetically-based neurodegenerative disease with no cure. So far, the majority of people at risk for HD have chosen NOT to be tested. The choice to test or not test is not as simple as it might seem.
17
My mother had FTD-she showed speech problems at 65, passed at 80. By the time she passed, she was mute, showed many habits that are generally unacceptable, and could not care for herself. My brother and I live in fear of inheriting it-and I have had discussions with my dr about this. At my last visit,after sharing some of the things going on with me, she asked how I am preparing-even though there is no way to KNOW I will get it (I am 66) ....and it really hit hard. Assisted suicide has crossed my mind frequently. My mother was not herself, and her last few years were awful for all of us-but I think worse for caregivers, as her mind was not really there any longer.
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“Molecularly targeted therapeutics may be the future of dementia care. Some neurologists wonder if dementia should be treated like cancer.”
Thank you Dr. Peskin for writing this article. Hopefully said mentioned therapies will revolutionize the treatment of all forms of dementia in the near future.
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The potential assaults of aging care sometimes utterly terrifying.
I;ve noticed that folks who regularly visit their parents or spouses in the nursing home where my mother lives become quite supportive of one another, and are kind towards the residents and tolerant of the often odd behaviors or reactions. One friend and I share a bit of a black humor about some of it. I cannot imagine how a single caregiver could manage everything alone without sinking, physically and mentally.
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I am living through this now as a caregiver. One thing the article leaves out is the complete lack of a safety net for people with frontetemporal dementia and their caregivers. I am spending down my savings while in my 40s, barely employed. Another aspect is the lack of tolerance and protection against discrimination - we live in liberal, progressive Massachusetts but are pretty much confined to our home due to the intolerance and antipathy of society toward people who look normal and say things that aren't polite or politically correct. And to say there is hope because of some genetic research is a stretch - there is no cure and even getting a modicum of palliative care out of the medical industry is like pulling teeth.
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@Brian I am so sorry to hear that you are living through this. You hit the nail on the head in describing the fact that society does not have enough compassion for people who look normal but say inappropriate things, as people with frontotemporal dementia do. This is often the most alienating part of frontotemporal dementia, as you describe articulately. I think your financial experience is also common to other caregivers and illustrates a major flaw in our health system. Thanks for sharing your perspective.
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Dear @Brian, I am very sad to read this and can relate. My mother is currently suffering from FTD but we are lucky enough to live in France. Our social security is now allowing us to have the visit of a nurse everyday to help my mother eat, get a shower and give her company at no cost. This allows my father to keep on working before his retirement.
Even with this support, the situation has been very tough on my family. I can only imagine how tough this has to be without support and safety net. I'll keep you in my thought and hope the upcoming treatments will help future patient to fight this disease.
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It's stories like this that make me angry whenever I hear about social safety nets being the end of society. This is such a necessary thing, and keeps your dad working! It's actually helping someone stay employed. I wish every single Senator and Congressperson who calls this "communism" reads this.
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My wife was diagnosed at 39 years old. I'm happy this disease is receiving more recognition but this disease does not just strike in the "fifth or sixth decade" of life. It's just not true.
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@Brendan @Brendan You are absolutely right that the disease does not exclusively strike in the fifth and sixth decade; in retrospect, I should have qualified that sentence with the word “usually.” Thank you for reading the article and for bringing this up.
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I wonder if your research shows any connection between this condition and early onset PD? And with the Parkinson’s Dementia that seems inevitable with long term PD? Symptoms sound familiar to my two friends, both age 67.
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Parkinson’s dementia is also an umbrella for other dementia- like movement disorders. My sister has Cortical Basal Degeneration, in the Parkinson’s movement disorder family. A real horror to watch her lose her language and motor skills.
1
My wife was diagnosed at 39 years old. I'm happy this disease is receiving more recognition but this disease does not just strike in the "fifth or sixth decade" of life. It's just not true.
21
The care givers are the true heroes of these families, rarely getting any downtime and never off duty. Close family must step up to give the spouse time off to recharge and relax, in order to keep the couple together or assisted living for the ailing spouse will be necessary.
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@sob Many spouses do not have close family, or they have family members who could help IF they were not thousands of miles away, or sandwich-generationed between work, their children, and the person with FTD.
It's criminal that US politicians choose to refuse financial aid to caregivers, such as paid professionals providing respite care within and outside the home, and money to support the family when a caregiver must quit or scale down work to provide this care.
It's part of the nonsensical image of every person magically able to handle everything on our own with no help from the government to which we pay our taxes. Wishing for desperately needed aid is termed "feeling entitled."
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@MLChadwick And it's disheartening to see how many of our fellow Americans still sign on to the "government is the enemy" propaganda, championed by Reagan and touted by countless politicians since.
WE are the government. Life is hard, and for caregivers (nearly all of us, sooner or later) practically impossible, at times. We need to help each other. Save your vote for leaders who get that.
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@Avenue B I haven't hear of any great advocacy from any candidate. Have I missed that?
11
How do I go about finding someone to take blood samples to see if I will probably end up with this disease? My mother has it and was diagnosed at 70 yo.
27
@Andrea Not all cases of FTD are inherited, although about 40% of cases appear to be familial. A gene mutation can be identified in a subset of these. Your mother may or may not have a gene mutation, but that would be the place to start. In any event you should discuss this with your doctor and seek professional genetic counseling before getting tested.
19
@Andrea Agree with @Keith Hammond. You can reach out to a dementia specialist, as they could talk with you about the pros and cons of pursuing genetic testing in your particular case.
15
@Andrea My family has had cases of this through 3 generations now, and my sister was recently tested at Penn Medical and found to have one of the gene mutations known to cause it. They have a Frontotemporal Degeneration Department and can give you the information you need. Good luck.
30
We are caring for my mother in law who suffers from FTD. She is 5 years into her diagnosis. And she was diagnosed much later then her 50s and 60s. We have not seen as much personality change as she is still very pleasant. The loss of language has been the hardest to deal with. She really can not communicate any longer and her physical mobility is in steep decline. This disease is very hard to watch your loved one disappear. She lives with us and my whole family is involved with her care and comfort. I cannot imagine being a spouse and dealing with it on my own day after day. I hope the therapies can be developed to help other families in the future.
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Yo, Dr. Peskin, why was it necessary to tell us that your mentor, Dr. Grossman, is short?
Now I'm curious. I demand that you inform readers of your height in centimeters, and exactly how far apart are the pupils of your eyes?
Once we have those figures, readers can better judge the value of your article.
61
@LarryAt27N Come on, Larry. Is this the only thing you came away with? Adding that Dr. Grossman was "short" merely provides a clue to instantly picture what he might look like. Whether that is relevant is another matter. This article describes very clearly and accurately what living with someone with FTD is like, although in many ways it is much, much worse. I hope you learned just a little bit about it.
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@LarryAt27N Interesting. I noticed articles written by millennial often include unnecessary, even to me embarrassing, physical descriptions. I have wondered about that myself. I swore I would never give an interview to a Millennial (not that they would ask)
15
I had the exact same thought.
22
My mother died after seven years of FTD, and I wonder what role or effect if any the consumption of alcohol had on her decline. I follow the literature on this malady but haven't noticed any scientific articles on the topic. Thanks for this excellent article, full of humanity in its uncomfortable detail.
78
@Jock Wernicke's encephalopathy is related to alcoholism. It stems from a thiamin deficiency and causes all sorts of havoc. Why doctors don't routinely check thiamin levels in alcoholic patients is beyond me.
23
There is no connection to alcoholism and dementia that I am aware of. As the article points out, there is a genetic component to both Alzheimers and various types of dementia. There is also likely environmental factors that contribute. If you want to blame your mother for her dementia because she drank too much there is no current vetted research to support that.
1
My loved one who suffered from FTD was an alcoholic. I’ve wondered if he began abusing alcohol early on because some of this was manifesting in his brain decades before diagnosis. He actually got sober a couple years before his diagnosis, and stayed sober, and died sober, something I greatly admire. He had the best excuse in the world to return to drinking and abusing drugs but he was determined to keep his hard won sobriety.
I’m sorry for what you and your family suffered, it’s a horrible, cruel illness.
1
My sympathies to all caregivers ‘surviving’ through this terrible diagnosis. My late husband’s glioblastoma was in the left temporal region. It was horrible to watch him lose himself. In some respects, we were luckier than those affected by FTD. He lived 21 months after diagnosis. These caregivers can face many many more years of loneliness, isolation and frustration.
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