What is it like to live with dementia?

There is long-term care insurance and you will have to research its availability. Premiums as as to be expected steep. Please let SF know what you find out.
Admitting to a facility when not being able to make decisions?
I live in Australia and all I've got is Medicare and private insurance. We pay for what we can afford and it looks good enough for me. I have my family around me and I'm pretty sure they will put me in a home if they find the going hard.

If I can, I will check myself in even though my family seems to find aged-care homes "horrible". My wife worries about maltreatment and rude orderlies. Even if she's right, it won't matter to me. I don't need people to be nice to me. I'm happy with whatever. It's not the case for my wife, though, but I'll be there for her (hopefully).
 

Well, it's hard to say about financial support.
In general, Nursing home is not cheap. When my late husband stayed for about one month after Cancer-surgery to recover, it was about the same charge, close to $6,000 per month as seeing housing, meals, some special exercise and etc., it's quite understandable in comparison to the hospital stay. Luckily, both Medicare and BCBS took care of all of costs. But, just one month, not 7 or 8 years' stay. My late husband told staff in Nursing home to get back home not burden financially to me, his wife. Afterwords, he passed away in his own bed
My mother-in-law on the hand, she was regarded being 'no income' just SS as she transferred her house to one of his sons prior to having Cancer. She did not need to pay any money having stayed in the Nursing home. She stayed there for about five to seven months and passed away in Nursing Home at age 85.
We can't afford $6000 a month. Your MIL's final days are good enough for me. I hope you've got support. You've been an angel to your family.
 
I lived with many pts like that 8 hrs a day in a mental asylum ; sometimes dreary ; sometimes funny but always a dredge really - but families couldn't cope with them and they were kept dry reasonably well fed and a little exercise? and sometimes kept us very amused - there was a funny side to it unfortunately
 
I worked as a CNA and took care of many dementia residents. Even though I knew something about the disease it didn't prepare me for seeing it in my own life as one of my close friends who lives in this building got it. It is sad to watch her get worse. The videos of Teepa Snow have been helping me dealing with her. She knows me, but not her husband of 56 years. Often she gets mad at him and will come to my door. I get her watching bunny or horse videos and listen to what she is trying to say. Sometimes I can figure it out.

Now her husband has had an operation and is recuperating at home but their daughter is staying with them till June. After that he is not sure what will happen so is going to get help.
 
I'm very late to this discussion, but hope you're doing okay, @Boon54; it's been a while since you posted. I found this discussion after a search because my huzz is starting to show forgetfulness, keeps asking me the same things over and over. We both had Covid a few months back and they say it can cause memory loss, I guess the jury's still out on whether permanently or not. Or it might be some other cause.

So after much research online about it, it appears that the next step and the only thing I can do right now is ask him to see a doctor about his memory loss. Apparently there are tests and medications that help some people; others they don't help at all. I couldn't find any advice as to what to do if he refuses to see a doctor, which I'm thinking he will refuse. (He's a very alpha personality and if he doesn't want to do something, he won't.)

I guess at that point all I can do is ask his remaining brother for help, which I hate to do since he's got incurable cancer. He's also 19 years younger than Huzz so I don't know if Huzz would listen to him anyway; they get along okay but Huzz is very alpha and brother-in-law is not, Huzz still thinks of him as "the kid."
 
My mom started repeating herself telling me the same things over and over every time we talked. She also developed a rather nasty temper and hateful mouth.

She would send me home with food claiming it was only 2 days old and dad would look at me and shake his head no and hold up more fingers. I would take it home and toss it and tell her it was delicious. *shrugs*

Stuff she told me my whole life suddenly changed and she would accuse me of not remembering.

I'm forgetful at almost 60 and still working but I realize it's part of the aging process. One of the reasons I left food service is because I was forgetting important things for job. There was just too much to recall.

I would forget ingredients or measure wrong. Things like that.

The job I do now has less to remember so I'm ok.
 
I'm very late to this discussion, but hope you're doing okay, @Boon54; it's been a while since you posted. I found this discussion after a search because my huzz is starting to show forgetfulness, keeps asking me the same things over and over. We both had Covid a few months back and they say it can cause memory loss, I guess the jury's still out on whether permanently or not. Or it might be some other cause.

So after much research online about it, it appears that the next step and the only thing I can do right now is ask him to see a doctor about his memory loss. Apparently there are tests and medications that help some people; others they don't help at all. I couldn't find any advice as to what to do if he refuses to see a doctor, which I'm thinking he will refuse. (He's a very alpha personality and if he doesn't want to do something, he won't.)

I guess at that point all I can do is ask his remaining brother for help, which I hate to do since he's got incurable cancer. He's also 19 years younger than Huzz so I don't know if Huzz would listen to him anyway; they get along okay but Huzz is very alpha and brother-in-law is not, Huzz still thinks of him as "the kid."
Boon, the OP hasn't been here since June Officer. I know your husband is very stubborn from your posts over the years, but I sincerely hope he listens to you when you ask him to see a doctor. Dementia is better caught early than after it progresses to the mid or later stages. It's also a tough, heartbreaking, exhausting thing to have to deal with, so I hope you don't find it necessary to involve his brother, who has enough on his plate, I'm sure. Best of luck with this issue.

I found this article that explains when to be concerned about dementia vs simple memory lapses.
https://www.hopkinsmedicine.org/hea...-dementia-5-clues-to-help-tell-the-difference

This site lists the stages of dementia, the timelines for each stage and probably everything else you'd need to know about the disease.
Seven Stages of Dementia | Symptoms, Progression & Durations
 
Boon, the OP hasn't been here since June Officer. I know your husband is very stubborn from your posts over the years, but I sincerely hope he listens to you when you ask him to see a doctor. Dementia is better caught early than after it progresses to the mid or later stages. It's also a tough, heartbreaking, exhausting thing to have to deal with, so I hope you don't find it necessary to involve his brother, who has enough on his plate, I'm sure. Best of luck with this issue.

I found this article that explains when to be concerned about dementia vs simple memory lapses.
https://www.hopkinsmedicine.org/hea...-dementia-5-clues-to-help-tell-the-difference

This site lists the stages of dementia, the timelines for each stage and probably everything else you'd need to know about the disease.
Seven Stages of Dementia | Symptoms, Progression & Durations
Thanks so much, @OneEyedDiva; those sites are extremely helpful! It looks like he's at Stage 3 now. Well, we had a little talk this evening and he's agreed to talk to his PCP about it next time he goes in (next appointment is in May). I tried to get him to go in earlier but he won't "unless it gets worse." I think I'm lucky he's just agreed to talk to his PCP about it.

I wish our health ins. would cover us to see a geriatric md but there are only 4 of those here in town anyway. But maybe his PCP might refer him to one? I hope so.
 
Thanks so much, @OneEyedDiva; those sites are extremely helpful! It looks like he's at Stage 3 now. Well, we had a little talk this evening and he's agreed to talk to his PCP about it next time he goes in (next appointment is in May). I tried to get him to go in earlier but he won't "unless it gets worse." I think I'm lucky he's just agreed to talk to his PCP about it.

I wish our health ins. would cover us to see a geriatric md but there are only 4 of those here in town anyway. But maybe his PCP might refer him to one? I hope so.
You're welcome, of course my friend. I'm glad you find the info helpful. Oh thank goodness he agreed to go!! My advice is for you to go in with him, at least for the consultation and post exam part. And have your questions ready. I recognized symptoms of my sister's dementia about two years before it starting really getting bad. When I brought it up to her SO (who didn't live with her), he brushed it off as normal forgetfulness. I didn't speak to her son and daughter about it, but I wish I had. At the time her son lived in the house she owned (had his own apartment), and was always downstairs visiting his mom, so I thought he would have noticed it.

She started doing the same as your husband...asking the same questions over and over. She also repeats things she told me several times during a conversation. Now she's at the stage where she's wandering, sometimes at night, which is dangerous. Her children live about an hour or more away and our niece lives with her now. I wish her children would be more proactive with getting her into a home, though I know it's a tough decision. But now her safety is at risk. ☹️
 
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Sometimes I think that dementia is actually harder on our loved ones than it is on us.

Sadly, the longer medical science keeps us alive the more likely we are to develop it.
If the suspicion is there then delay doesn't help.
1st step is a consultation with a neurologist for testing evaluation.

Once tested if suspected next could be blood test & brain MRI.

Depending on the results of those next would be a PET scan to verify one way or the other.

Meanwhile most likely this could be an interim treatment

Cholinesterase Inhibitors (Mild-to-Moderate Alzheimer's)
These boost acetylcholine, a brain chemical for memory.
Donepezil: (Aricept): For all stages.

Then
Disease-Modifying Therapies (Early Alzheimer's)
Lecanemab: (Leqembi): Targets and removes amyloid plaques, potentially slowing decline.

That done at an infusion clinic.

6 months of that treatment another PET scan should be taken to see if Lecanemab: (Leqembi) is having the desired effect.

PET scan can be expensive & so can Lecanemab: (Leqembi) Actual costs depend on what insurance will pay for.

It's not easy to admit testing is needed. But if left untreated the lack of will to find out for sure is cruel for both the person & family members that have to care for someone with full blown Alzheimer's.

Just like planning & letting heirs know what to do & what to expect isn't a happy topic to deal with . This is just as difficult.
 
You're welcome, of course my friend. I'm glad you find the info helpful. Oh thank goodness he agreed to go!! My advice is for you to go in with him, at least for the consultation and post exam part. And have your questions ready. I recognized symptoms of my sister's dementia about two years before it starting really getting bad. When I brought it up to her SO (who didn't live with her), he brushed it off as normal forgetfulness. I didn't speak to her son and daughter about it, but I wish I had. At the time her son lived in the house she owned (had his own apartment), and was always downstairs visiting his mom, so I thought he would have noticed it.

She started doing the same as your husband...asking the same questions over and over. She also repeats things she told me several times during a conversation. Now she's at the stage where she's wandering, sometimes at night, which is dangerous. Her children live about an hour or more away and our niece lives with her now. I wish her children would be more proactive with getting her into a home, though I know it's a tough decision. But now her safety is at risk. ☹️
My grandmother suffered from Alzheimer's. Fortunately my grandfather built a house for my uncle right behind theirs, so when he passed away my uncle and aunt could look after my grandmother. It was a good thing because she would leave the house at 3am in her bedclothes to take a walk "uptown". :(

We stayed with her during this time and because my grandfather had been a philanderer in their younger days, she would prop chairs against all the doors and declare that he wasn't getting in the house after being out all night. She would wake up later in the night and remove them all, saying she was waiting for him. I recall that she played with dolls as well.

She passed away in a nursing home on her birthday and was completely lucid right before she passed.
 
I saw on this morning's news that not only will there soon be a blood test to detect Alzheimer's, there is a trial with antibodies being used to slow down the disease by correcting the proteins in the Cerebrospinal Fluid the fluid, thus delaying the symptoms. Hopefully we will get there sooner rather than later.
 
I saw on this morning's news that not only will there soon be a blood test to detect Alzheimer's, there is a trial with antibodies being used to slow down the disease by correcting the proteins in the Cerebrospinal Fluid the fluid, thus delaying the symptoms. Hopefully we will get there sooner rather than later.
There is a blood test that can detect the presence of the plaque that damages the brain function.
Google Search

With our advantage plan there is a process that must be followed.
1. Explain the concern with your PCP. The PCP will refer to a neurologist for testing evaluation.
2. The neurologist will perform a test involving recalling words, drawing, & other skills related to memory.
3. A decision to have further testing is made.
4. A MRI brain scan & the FDA approved blood test that can cost $1,700.00 is a preliminary step not a definitive indication of Alzheimer's.
5. Once if there is a high likely hood of Alzheimer's a PET scan will be ordered.

During this testing a prescription for
Cholinesterase Inhibitors (Mild-to-Moderate Alzheimer's)
These boost acetylcholine, a brain chemical for memory.
------>Donepezil: (Aricept): For all stages. may be prescribed.

If found then this can take place.

Disease-Modifying Therapies (Early Alzheimer's)
Lecanemab: (Leqembi): Targets and removes amyloid plaques, potentially slowing decline.

That done at an infusion clinic.

6 months of that treatment another PET scan should be taken to see if Lecanemab: (Leqembi) is having the desired effect.

Rather than trying to hide from what was obvious to us this is where my wife is in finding out what her/our future might be. We won't know until later in Jan. what to look forward to. Our sons know what is taking place.

Knowing that
Lecanemab: (Leqembi): Targets and removes amyloid plaques,& only potentially slows decline gives some hope.

The hope being that death will come before total loss of memory happens. Because we are proactive it gives us time to plan. Meanwhile if the disease does progress I will be my wife's care giver until I die. After that there is sufficient money to insure her care will take place at a premier facility until she dies. Our sons know what the plan is & what is expected of them.

I can't imagine anyone being so stubborn once suspicion is a concern to them, not wanting find out for sure what to expect.
 
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Hmm, I thought I had posted this here, but I guess not as I couldn't find it. Anyhoo, here it is:

Dementia Comes in Many Forms. Alzheimer’s Is Just One.
NYTime December 2025
FYI: There are many types of dementia, with over 50 diseases causing it, but the four main categories are Alzheimer's disease, Vascular Dementia, Dementia with Lewy Bodies (DLB), and Frontotemporal Dementia (FTD), with Mixed Dementia (a combination of types, often Alzheimer's & Vascular) being very common, and other rarer forms like Huntington's or CJD also existing. The specific type affects symptoms and progression, with Alzheimer's being the most common cause.

This article discusses ONLY the four main categories.

Dementia Comes in Many Forms. Alzheimer’s Is Just One.
Here’s what to know about the other main types and how they affect the brain.
NY Times Dec. 1, 2025

Alzheimer’s disease is the most commonly diagnosed form of dementia, but it’s far from the only one. In fact, most people who have dementia (including Alzheimer’s) show signs of several different types of neurodegenerative disease in their brains.

That can include the amyloid plaques and tau tangles that are hallmarks of Alzheimer’s; damage to the brain’s blood vessels, which is indicative of vascular dementia; and clumps of assorted other toxic proteins that cause Lewy body dementia, frontotemporal dementia and LATE.

“If you look at the old people with dementia, what do they have? Well, they have a little bit of everything,” said Dr. Costantino Iadecola, a professor of neurology at Weill Cornell Medicine.

A person’s diagnosis largely depends on their main symptoms and what neurologists can see in their brain. While there aren’t treatments yet to stop or reverse the progression of any form of dementia, experts say that getting an accurate diagnosis is important to help manage symptoms and know what to expect as the disease progresses.

Here’s an explainer on the other primary types, including how they affect the brain and their symptoms.

Vascular Dementia
Vascular dementia is the second most common kind of dementia. It can arise after a stroke, either one large one or several smaller ones, but more typically stems from long-term wear and tear on the brain’s smaller blood vessels. Damage often occurs to the brain’s white matter — the insulated nerve fibers that carry signals from one neuron to the next. Those fibers are the last stop for the smaller blood vessels, so if blood flow is occluded, it’s the white matter that suffers first.

When blood flow to the brain is disrupted, the brain cells are deprived of oxygen and nutrients, said Silvia Fossati, a professor of neural sciences at Temple University’s Lewis Katz School of Medicine.

One of the most common symptoms of vascular dementia is general cognitive and physical slowing. This likely occurs because the signals in the brain aren’t moving as efficiently through the impaired white matter, Dr. Iadecola said. Other symptoms may include difficulty with decision making, problem solving and task execution.

Poor cardiovascular health, particularly high blood pressure, is the biggest risk factor. In fact, an important clue that someone has vascular dementia is a history of heart attack, stroke or high blood pressure. An M.R.I. can help confirm the diagnosis by revealing the white matter damage.

As with any type of neurodegenerative disease, once brain cells are damaged, the symptoms are largely irreversible. But vascular dementia is more preventable than other forms of dementia.

“Let’s try to keep the blood vessels healthy,” Dr. Iadecola said. “That’s the best thing we can do right now. We know how to do that better than we know how to fight neurodegeneration.”

Lewy Body Dementia
This type can cause a constellation of symptoms involving the whole body. That’s because it’s “not just something that affects the brain, it affects the nervous system in the periphery as well,” said Dr. Sudha Seshadri, the founding director of the Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases at the University of Texas Health Science Center at San Antonio.

Some people experience classic cognitive impairment, like problems with executive functioning, though memory loss is less common. Others have visual-spatial difficulties; for example, struggling to locate items in a pantry or judge distances. People may also have striking visual hallucinations.

Physical issues can include constipation, difficulty urinating, lightheadedness when standing up and, in men, erectile dysfunction. Parkinson’s disease symptoms can also occur, such as tremor, muscle rigidity and difficulty with balance.

The overlap with Parkinson’s makes sense because the two conditions are caused by the same dysfunctional protein, alpha-synuclein. The protein clumps into so-called “Lewy bodies” inside neurons, damaging and ultimately killing the cells. A person’s symptoms depend on which areas of the brain are affected first and how the toxic proteins spread.

Doctors tend to rely on a person’s symptoms to make a diagnosis, but that can be difficult because “they’re so different in different patients, and are not always easy to recognize,” said Dr. David Irwin, an associate professor of neurology at Penn Medicine. As a result, Lewy body dementia is thought to be underdiagnosed.

Frontotemporal Dementia
This type of dementia is rarer than the other forms, and it tends to emerge earlier in life, with people typically first experiencing symptoms in their 40s, 50s or 60s.

The brain’s frontal lobe, as the name suggests, is one of the areas most affected. Cognitive symptoms often include difficulty with executive functioning, planning or organizing. Those problems may become apparent if someone has trouble managing their finances or planning a trip, Dr. Irwin said.

Dramatic personality changes can also occur. Some people become uninhibited and impulsive; they may approach strangers or make rude or inappropriate comments. People can also become apathetic and unmotivated, or emotionally cold and distant.

As a result, frontotemporal dementia, or FTD, is often initially misdiagnosed as a psychiatric condition, said Dr. Winston Chiong, a professor of neurology at the University of California, San Francisco. A lot of the core symptoms “get attributed to depression or mood or addiction or life events that cause people to behave differently,” he said.

Some people with FTD also experience primary progressive aphasia, or difficulty with speaking and comprehending language.

In the brain, there are two main proteins that become dysfunctional and are associated with FTD. One is TDP-43, which is also involved in LATE and amyotrophic lateral sclerosis, or A.L.S. The other is tau, but different forms of tau than the one implicated in Alzheimer’s.

LATE
LATE, or limbic-predominant age-related TDP-43 encephalopathy, is a relatively new dementia diagnosis. It first came to light roughly 20 years ago, after scientists observed that many people who died with Alzheimer’s symptoms had toxic clusters of the protein TDP-43 in their brains (sometimes in lieu of amyloid and tau, and sometimes in addition to them).

As the acronym suggests, LATE is most common in the later decades. Dr. Peter Nelson, a professor of pathology at the University of Kentucky College of Medicine, said that roughly a third of people in their 80s and 90s have signs of the disease in their brains.

As with Alzheimer’s, the part of the brain most affected is the hippocampus, and memory loss is the most common symptom. On its own, LATE progresses slowly and “is relatively benign,” Dr. Nelson said. But people often have both LATE and Alzheimer’s concurrently, which results in “a more swift and severe clinical course,” including anxiety, depression, hallucinations and delusions.

There isn’t a blood test for TDP-43, so doctors can only make a diagnosis based on a person’s symptoms and by ruling out other forms of dementia. The disease is most commonly discovered during an autopsy. The first clinical trial for a treatment for LATE is currently underway.
 
Thanks to so many for contributing to this thread. Like almost everyone else, my greatest ageing fears are dementia and a debilitating stroke, i.e., conditions in which I can no longer care for myself and become a burden on my family.

This is Teepa Snow she is a dementia expert, and has a raft of online Videos explaining Dementia and it's effects on both the patient and the carers and families... In the video below she discusses the 10 early signs of Dementia


@hollydolly, the Teepa Snow video you linked was so clear and informative that I watched her full series of 4 or 5 videos from that lecture. Very eye-opening, especially since my mother suffered from vascular dementia and my FIL from Alzheimer's. There was so much I understand better now about both conditions, including their mental but not physical symptoms when they were ill or had UTIs.

What a shame that doctors apparently either don't know about these videos or don't point family members toward them. They'd be invaluable to so many.

My daughter's very close friend is dealing with a mom with sundowners and other cognitive losses, and a father who is in denial about it. I'll send DD the link for Teepa Snow's video so she can share it with her friend.

What a priceless thread this is for seniors.
 
Hmm, I thought I had posted this here, but I guess not as I couldn't find it. Anyhoo, here it is:

Dementia Comes in Many Forms. Alzheimer’s Is Just One.
NYTime December 2025
FYI: There are many types of dementia, with over 50 diseases causing it, but the four main categories are Alzheimer's disease, Vascular Dementia, Dementia with Lewy Bodies (DLB), and Frontotemporal Dementia (FTD), with Mixed Dementia (a combination of types, often Alzheimer's & Vascular) being very common, and other rarer forms like Huntington's or CJD also existing. The specific type affects symptoms and progression, with Alzheimer's being the most common cause.

This article discusses ONLY the four main categories.

Dementia Comes in Many Forms. Alzheimer’s Is Just One.
Here’s what to know about the other main types and how they affect the brain.
NY Times Dec. 1, 2025

Alzheimer’s disease is the most commonly diagnosed form of dementia, but it’s far from the only one. In fact, most people who have dementia (including Alzheimer’s) show signs of several different types of neurodegenerative disease in their brains.

That can include the amyloid plaques and tau tangles that are hallmarks of Alzheimer’s; damage to the brain’s blood vessels, which is indicative of vascular dementia; and clumps of assorted other toxic proteins that cause Lewy body dementia, frontotemporal dementia and LATE.

“If you look at the old people with dementia, what do they have? Well, they have a little bit of everything,” said Dr. Costantino Iadecola, a professor of neurology at Weill Cornell Medicine.

A person’s diagnosis largely depends on their main symptoms and what neurologists can see in their brain. While there aren’t treatments yet to stop or reverse the progression of any form of dementia, experts say that getting an accurate diagnosis is important to help manage symptoms and know what to expect as the disease progresses.

Here’s an explainer on the other primary types, including how they affect the brain and their symptoms.

Vascular Dementia
Vascular dementia is the second most common kind of dementia. It can arise after a stroke, either one large one or several smaller ones, but more typically stems from long-term wear and tear on the brain’s smaller blood vessels. Damage often occurs to the brain’s white matter — the insulated nerve fibers that carry signals from one neuron to the next. Those fibers are the last stop for the smaller blood vessels, so if blood flow is occluded, it’s the white matter that suffers first.

When blood flow to the brain is disrupted, the brain cells are deprived of oxygen and nutrients, said Silvia Fossati, a professor of neural sciences at Temple University’s Lewis Katz School of Medicine.

One of the most common symptoms of vascular dementia is general cognitive and physical slowing. This likely occurs because the signals in the brain aren’t moving as efficiently through the impaired white matter, Dr. Iadecola said. Other symptoms may include difficulty with decision making, problem solving and task execution.

Poor cardiovascular health, particularly high blood pressure, is the biggest risk factor. In fact, an important clue that someone has vascular dementia is a history of heart attack, stroke or high blood pressure. An M.R.I. can help confirm the diagnosis by revealing the white matter damage.

As with any type of neurodegenerative disease, once brain cells are damaged, the symptoms are largely irreversible. But vascular dementia is more preventable than other forms of dementia.

“Let’s try to keep the blood vessels healthy,” Dr. Iadecola said. “That’s the best thing we can do right now. We know how to do that better than we know how to fight neurodegeneration.”

Lewy Body Dementia
This type can cause a constellation of symptoms involving the whole body. That’s because it’s “not just something that affects the brain, it affects the nervous system in the periphery as well,” said Dr. Sudha Seshadri, the founding director of the Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases at the University of Texas Health Science Center at San Antonio.

Some people experience classic cognitive impairment, like problems with executive functioning, though memory loss is less common. Others have visual-spatial difficulties; for example, struggling to locate items in a pantry or judge distances. People may also have striking visual hallucinations.

Physical issues can include constipation, difficulty urinating, lightheadedness when standing up and, in men, erectile dysfunction. Parkinson’s disease symptoms can also occur, such as tremor, muscle rigidity and difficulty with balance.

The overlap with Parkinson’s makes sense because the two conditions are caused by the same dysfunctional protein, alpha-synuclein. The protein clumps into so-called “Lewy bodies” inside neurons, damaging and ultimately killing the cells. A person’s symptoms depend on which areas of the brain are affected first and how the toxic proteins spread.

Doctors tend to rely on a person’s symptoms to make a diagnosis, but that can be difficult because “they’re so different in different patients, and are not always easy to recognize,” said Dr. David Irwin, an associate professor of neurology at Penn Medicine. As a result, Lewy body dementia is thought to be underdiagnosed.

Frontotemporal Dementia
This type of dementia is rarer than the other forms, and it tends to emerge earlier in life, with people typically first experiencing symptoms in their 40s, 50s or 60s.

The brain’s frontal lobe, as the name suggests, is one of the areas most affected. Cognitive symptoms often include difficulty with executive functioning, planning or organizing. Those problems may become apparent if someone has trouble managing their finances or planning a trip, Dr. Irwin said.

Dramatic personality changes can also occur. Some people become uninhibited and impulsive; they may approach strangers or make rude or inappropriate comments. People can also become apathetic and unmotivated, or emotionally cold and distant.

As a result, frontotemporal dementia, or FTD, is often initially misdiagnosed as a psychiatric condition, said Dr. Winston Chiong, a professor of neurology at the University of California, San Francisco. A lot of the core symptoms “get attributed to depression or mood or addiction or life events that cause people to behave differently,” he said.

Some people with FTD also experience primary progressive aphasia, or difficulty with speaking and comprehending language.

In the brain, there are two main proteins that become dysfunctional and are associated with FTD. One is TDP-43, which is also involved in LATE and amyotrophic lateral sclerosis, or A.L.S. The other is tau, but different forms of tau than the one implicated in Alzheimer’s.

LATE
LATE, or limbic-predominant age-related TDP-43 encephalopathy, is a relatively new dementia diagnosis. It first came to light roughly 20 years ago, after scientists observed that many people who died with Alzheimer’s symptoms had toxic clusters of the protein TDP-43 in their brains (sometimes in lieu of amyloid and tau, and sometimes in addition to them).

As the acronym suggests, LATE is most common in the later decades. Dr. Peter Nelson, a professor of pathology at the University of Kentucky College of Medicine, said that roughly a third of people in their 80s and 90s have signs of the disease in their brains.

As with Alzheimer’s, the part of the brain most affected is the hippocampus, and memory loss is the most common symptom. On its own, LATE progresses slowly and “is relatively benign,” Dr. Nelson said. But people often have both LATE and Alzheimer’s concurrently, which results in “a more swift and severe clinical course,” including anxiety, depression, hallucinations and delusions.

There isn’t a blood test for TDP-43, so doctors can only make a diagnosis based on a person’s symptoms and by ruling out other forms of dementia. The disease is most commonly discovered during an autopsy. The first clinical trial for a treatment for LATE is currently underway.
Thank you for the very detailed information!

My mother had mini-strokes (TIAs) and epileptic seizures from her 50s into her 80s. She could no longer drive after she drove my parents' car into a ditch on an extended road trip. :( The TIAs became frequent starting in her 60s. Each time she would be taken to the hospital there would be no evident signs of a stroke. The only symptom was that she became depressed afterward. She became forgetful but thankfully never developed outright dementia.
 
Thanks to so many for contributing to this thread. Like almost everyone else, my greatest ageing fears are dementia and a debilitating stroke, i.e., conditions in which I can no longer care for myself and become a burden on my family.



@hollydolly, the Teepa Snow video you linked was so clear and informative that I watched her full series of 4 or 5 videos from that lecture. Very eye-opening, especially since my mother suffered from vascular dementia and my FIL from Alzheimer's. There was so much I understand better now about both conditions, including their mental but not physical symptoms when they were ill or had UTIs.

What a shame that doctors apparently either don't know about these videos or don't point family members toward them. They'd be invaluable to so many.

My daughter's very close friend is dealing with a mom with sundowners and other cognitive losses, and a father who is in denial about it. I'll send DD the link for Teepa Snow's video so she can share it with her friend.

What a priceless thread this is for seniors.
I don't have anyone who suffers from Dementia in my family... but some years ago, I stumbled across Teepa Snow's videos'.. and I learned so much from them, I pretty much watched all of them, and I highly recommend them to everybody I know who is dealing with dementia in all it's different stages.
I absolutely agree it's a great shame that Doctors' don't seem to be aware of Teepa's work....or don't suggest them if they are aware of them...because I believe they are invaluable, and there doesn't seem to be anyone else similar to Teepa, doing the same work , and filming for youtube, which makes them extremely important to families and carers.. and even those people who are newly diagnosed with Dementia
 

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