Dementia: 10 Things I Wish Doctors Told Us
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- เผยแพร่เมื่อ 28 พ.ค. 2024
- Getting information from the medical community can be frustrating! Here are ten things I wish a doctor had told us.
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The most disheartening aspect of caring for a loved one who exhibits signs of Mild Cognitive Impairment is the dismissal by other family members as well as medical professionals of these issues.
It's hard when no one believes you - or is in denial.
You're so right. Nobody tells you anything. That's why videos like yours are so valuable.
It is sadly true for most of us. Glad the videos help!
I really think ordinary doctors do not know any more than the family care giver, perhaps less
My mom has dementia and I've gotten more understanding and information from your channel the her doctor or any other channel .
I'm so glad I could help! It is why I started the channel - but it's also a sad statement on the state of our medical community.
Thank you, thank you, thank you. I am going through the beginnings of stage 4 with my mom right now. My grandmother also had Demetia while having polycystic kidney disease. What a hoot that was... lol
My mother took care of my grandmother until she passed. Now my mom denies my grandmother had dementia, while denying her own dementia. I'm Praying for everyone who is a caregiver. It's a very humbling time.
Caretaking dementia is definitely difficult.
No kidding. I’ve learned mostly about dementia from you tube. We are approaching year 13. All the doctors do is say see you in 6 months. Gosh. Thanks, Doc.
And those 6 month appointments aren't all that helpful.
@@lifeunderdeborahspalm-thed8114 I thought perhaps I was “off” due to my husband’s dementia diagnosis 12 years ago. At first I did not give it much thought, now I see signs long before 12 years ago. I am not wishing anything bad to happen to him, some days I wonder how much longer can I do this. He is easy to care for, but the emotional drain is the tough part.
I am thankful for the info and comments from this group.
Their pay is their most concern
I had a friend who worked for me,I owned a cleaning company.She seemed fine,somewhat forgetful but was a good cleaner.
She seemed to have slipped and I went to her house to check on her cause she said she wasn't home,she was in another condo. When I went there and asked if she could work with me she responded by saying'You don't want to come this far.' I was like No,It's no problem
i can pick you up here. She said"oh no this isn't my house,I just clean here." She had been living there since the late 70's! Since I had been reading about dementia because of my mom in law I knew NOT to argue. I just said ok Judy.. no problem. I lived right up the street.
I am in early- mid stage dementia. I can relate to everything she said. It seems that my Psychiatrist is totally uninterested in my case! He only wants to see me 2-times a year. Why bother?
I am blessed that my daughter is a pharmacist because she tells my doctors what to prescribe!
I mean, what is this hopeless, indifferent, not interested attitude from my Psychiatrist? What’s the point in having a Psychiatrist? What do patients do when family members are not supportive? It seems they are on their own!
I am THANKFUL for my family and I pray for those that do not have support from family!
Doctors should,at least, act interested, even though there is no cure for dimentia.
I agree. Some of our experiences were similar.
They told us nothing of what to expect, things to watch for or how to handle situations…nothing just here’s the diagnosis, Aricept and Namenda….neither of which helps my mom. Mom seems to know that something isn’t right but yet paranoid, zero cognitive ability, personality changes, anger, frustration and denial.
Lots of valid points ... we had to stop my loved one driving because they were dangerous!!! You have to take charge but also not upset them by not fighting with them because they have no understanding of their condition just be kind to them and yourself and enjoy that moment .xxx
Yes! It's so frustrating the lack of knowledge/communication and support. Some things could even have been shared "simply" giving a really clear phamplet
It is truly stunning. No other disease seems to get treated this way.
My 78 year old mom has just been Diagnosed with Dementia .
Thank you for sharing your experience. This content is very useful for patient
Care givers like me
Respect from india 🇮🇳
The book "The 36-hour Day" by Mace & Rabins was very helpful to me. Also was given some very good information by the medical director of the assisted living/memory care facility my MIL was at.
But, by and large, the medical community was less than helpful or informative. And SO many medical professionals had no idea how to deal with her. There really needs to be more training for everyone who is likely to interact with people with dementia from medical office receptionists, ultrasound technicians, dentists, ED nurses, etc. We couldn't get an ED nurse to understand that asking a dementia patient things like "What day of the week is it?" wasn't appropriate assessment tool for a concussion.
I have heard about the 36 hour day but never read it. I have found that the most informative folks have been those who work in memory care facilities. They were up on the latest things and knew a lot of the nuances that come with the disease. I agree; everyone across the medical spectrum could use some training.
Wow the driving one....the dr made my husband take a drivers test to renew his lisence...due to his neuropathy, HE WANTED IT.
stopping AT a stop sign or red light were way off...
Of course he didn't pass.
The more I read, hear these videos the more I see him having this earlier than
I THOUGHT he did.
It can be really hard to tell. Everyone has their own "quirky behavior," and I've seen that those behaviors become a little worse. But in the beginning, it's difficult to tell if it's just them or if something else is going on.
The driving…I feel pressured by people to not let him drive, he says he is ok and he still drives around town. I have him evaluated every year…after this evaluation coming up, I will request more often…that is if he even passes.
This driving is the toughest part…I just want to do the right thing for him.
It's easy to think it's something else in the early stages.
Wish I had seen this before I lost my husband to this terrible disease. No Dr explained many of these symptoms and stages. You gave me more info then they did. The loss of my husband was so terrible because I didn’t understand a lot of the things you discussed. My heart is broken from the loss and the end of what he went through in the facility he was in till I took him out of there and home. 💔😢
It was definitely harder for us as well because we didn't know anything. A lot of arguments could have been avoided to say the least.
😢
I agree with everything you said. I only found out about the stages and symptoms of dementia my husband was experiencing through my own research. All I got from our doctor was a prescription for Namzeric. Your videos and the candid way you present information are excellent. Thank you so much for such wonderful, useful advice!
Thank you!
My Dad died of Alzheimer's 7 months ago, and we are currently in the thick of it with my mom(I am thinking stage 6-ish now). It was not until we moved them into an assisted living/nursing facility that we were truly educated on what to expect. Not by the doctors, but by the nursing staff at their facility, who have been wonderful. They have been the ones who walk us through what was/is normal, what we could expect, and ways to address the issues. Both of my parents have presented so differently in their symptoms that it is almost like starting over with Mom even though we have already been through this with Dad. Because of this, we have new questions and concerns that they are helping us through. The neurologist basically gave us the diagnosis and a couple of pamphlets with information. I have learned more from the handful of videos I have watched of yours than we have from their neurologists.
We found the folks at assisted living to be very knowledgeable. Glad the videos have helped.
One of the best sources for information are videos by Teepa Snow that are available here on TH-cam. She goes over what to expect and demonstrates behaviors. Also, seek out physicians who specialize in geriatrics. Hospices are also good places to get information.
The time when you could expect your doctor to provide you with all the information you need is passed. We all need to be our own case managers and researchers. It also helps to use the information you find to make a list of questions for your doctors. This often gets better information.
Teepa is great!
Teepa is Great just type in help with different Dementia in your web browser or the type of dementia you will find more information another great one is Careblazers! I have a heart for caretakers. I am a retired Caseworker and also cared for my Aunt & a friends mother both had Alzheimer’s. This utube ex caregiver is extremely knowledgeable as well 😘💞💕💫🌟
Thank you so much for your videos! We are dealing with dementia in our family. Now on 6 going rapidly to 7. Didn't know anything about the stages. I have learned so much and am looking forward to passing along to the family.
Such a great list. I might add the lose of spatial awareness- not knowing up from down, left from right or understanding how or where to sit. Trying to dress or maneuver them to a safe position can be such a challenge and so frustrating that it is hard to remain calm.
Oh my gosh I have said the same thing. This is my one of my favorites video clips. What you are saying should come from the doctor when the diagnosis is shared. We only got medication to address “sundowners” No explanation of stages, referral to Alzheimer’s Association, support groups, nothing. Thank you, thank you for saying this out loud.
You are so right, no matter how many Dr. We saw no one told us the information, it would have been extremely helpful.
I don't understand why. Is it because people are (usually) old and there's no cure? The caretakers are the ones who REALLY need the info. We don't treat cancer that way...
Doctors do not share much information when it comes to dementia. There are many different kinds of dementia. There's Parkinson's dementia. I am considering sharing my experiences on TH-cam for the last 10 years. Thanks for your videos. Very informative, educational and interesting.
I have been watching your videos. And your very helpful. My sister and I are thinking something going on with our mom. But it like how do we know for sure. Bc some things she does would be her. Then sometimes Lil things seem different. She very high anxiety. And passed the Lil test. But she knows how to lie. How do we know? There is times I can't talk to my mom. Bc she has been all over me since our dad passed 11 years ago. So now when she really needs us. It hard bc she burnt us out.
We are stuck between what is fact and help. Seems when we see doctors to include neurologist have not given any real direction or info. It seems the doctors just wanted to just say its old age and take Seroquel. When I speak to all these so called gov organizations and private services, the first question too us is do u have Medicaid. We do not. They state we cannot offer help. So far all we find is allot of talk with not substance. When u become old with commodities, the system writes u off. Maybe there are some good geriatric doctors or geriatric neurologist, but not many.
I didn't know that constipation is the first sign which she struggled with for two years prior to diagnosis. Her doctor kept prescribing laxatives: 4 different laxatives of which she took incorrectly because they didn't work "fast enough" then had accidents on the den rug, kitchen floor... Afterwards, she swore she would never do that again but did it week after week.
Also she stopped talking the last 3 months which I didn't know would happen. She understood everything, followed instructions, etc.... but no speech.
I am learning more about dementia, too late now, even though I had researched a lot during that time, but hers was different from what I read or watched.
I have heard that constipation can be a sign - I think that was also one of the issues Robin Williams had. My FIL lost the ability to speak. He would do a lot of pointing at items, etc. He understood us but could not talk. It was kind of like a stroke.
Sounds more like the lest body /frontal lobe dementia lady on Charming Abode has that type.
#4 & 5 oh my! saving yourself from arguements....Thank you !
Because there's hardly ever any arguments! (said no caretaker ever!)
Yes, switched to decaf for her, and I'm noticing a difference. The Hallmark channel is on all the time and I have been giving a narrative that I have been teasing her but I'll not do that anymore. A year ago she thought it was funny and acted offended, not when I do it I'm not so sure. One more thing, I turn off the electric range at the circuit breaker. Twice she has tried to cook in the middle of the night and it was a mess but could have started a fire.
Good idea on the stove. Newer gas ones have a "lock out" option on the range.
Very knowledgeable! One of the best videos I’ve seen.
Thank you. Glad it helped!
Going through all of this right now. Thanks for filling in the gaps.
The ignorance of doctors and the medical community in general is breathtaking. These videos are 1000s times better. Support groups with longtime caregivers help a lot too.
My husbands longtime PCP actively opposed any suggestion of anything other than just “spacey” or “I forget things myself.” It took a driving incident involving police to get the Rx for in-depth tests.
In his hospital stays, after his diagnosis, docs and staff would say “oh yeah I know about Alzheimer’s.” Turns out they had a gramma they saw periodically who mixed up names, or their aunt was forgetful and everybody said she had Alzheimer’s. (Maybe she did, but)
The biggest one-it became a major hospital “incident” with lawyers and everything-was the hospitalist who insisted hubs could self-report, while agreeing he had Alzheimer’s. Yes, he smiled and seemed compliant. But he had no concept of what he’d done, or not done. I guess it was easier to just say “well, he *said* he did and I thought he’d know that.”
Otherwise, not trying to “convince” them with logic or explanation is so hard early on. You have to realize they really can’t understand it, and a lot of it doesn’t really matter in the big picture anyway.
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I didn't know that (I have a few years before I'm eligible ;-))
Thank you. I've had less than a week to get ready to care for my mother in-law with dementia and videos like yours are helping me to understand and navigate this new way of life. ❤
Mayo clinic was the best experience, considering what all I was facing and still facing
Good points . The video was helpful in covering the things we should expect when a loved one is diagnosed with dementia. It is so hard to see the doctors who deal with patients who have dementia that caregivers must pursue self-education.
Glad you’re still doing these videos for your followers- thank you ❤️❤️
Thank you! I had a lot of things to catch up on after my mom died. Glad the videos still help people!
My father had dementia in the middle stages. He had a simple heart procedure with anesthesia. He never was the same after that. His cognitive abilities took a steep decline. He had a concierge dr and a cardiologist advising him on this procedure and never once did they mention that some just don't come back after this. It would have been good to have known as after the fact every nurse we know told us it's very common.
That's horrible! I never heard that before, but it doesn't surprise me either. Anesthesia can be difficult on older people. It made my dad weird for quite a while (He was 88).
Every person who has dementia is different as you say here. Some completely skip the stages.
I think a doctor isn’t going to talk about the stages in front of the patient for obvious reasons, so a separate appointment would need to be made.
They are not going to start off talking about how much is lost through the different stages when a person is diagnosed.
Also there is tons of information about the different stages on line, very accurate and helpful information.
When any terminal disease is diagnosed the doctor isn’t going to describe the decline into death, and it also depends on which medical professional you are dealing with. A professional who specialises in diseases like dementia will have the in depth knowledge, the average general practitioner will not.
The doctors seem to be a crap shoot. The specialists my in-laws saw didn't do or say much. My mom's PCP was excellent.
My husbands neurologist has NEVER said this is what to expect. Or here are some groups you can join, here some pamphlets. Nothing
Most of what I hear is the same. No info on anything.
Same for me with my mom, pamphlets….
That’s an Allen’s cognitive exam you’re talking about. An OT or speech therapist can administer and interpret it, give you an idea what stages they are at.
thank you! VERY informative. LouieLewy
I'm a retired RN. From my professional experience, all I can say to all you said is...yes.
Dr Pius Ozigbe is Always on time. compassionate. Empathetic. easy to take to and relates exceptionally well. Hands down the most effective and efficient doctor I recommend him. thank you doctor.
Thank you so much for your videos. I admire you for turning your Hard and Difficult experience into a service of Help to others who are going thru this dark tunnel and you are bringing them light.
God Bless You
Thank you so much!
Thankyou for the Info..
My Mother is Sleeping all the time and starting Not to eat very well....I noticed when I give her water...it Sounds like she is having trouble swallowing now...
When you said that it would have stopped soooo many arguments, OMG YES!! I love your videos. I’m at the stage where I’m feeling guilty now having to put my mom in a facility and I’m just learning all this and it’s a nightmare! She calls me every day around 3 or 4pm onward wanting to go home, and It’s so heartbreaking. You’ve helped me to see things more clearly. Thank you so much!💞
Mayo clinic is a amazing I have Alzheimer’s disease and they are great
My wife was into early stage 4 before I could convince the PCP to refer her to a neurologist for eval. I once asked "what do you do when you're dementia doctor has dementia?"
Wow, that's bad.
Something that I haven't heard much about is how even the early stages impact your life. Right now my husband is in the early stages - so functional for daily living and still drives in quiet settings. But I wonder how long I can leave him alone if I am going out . He is fine if nothing unusual pops up but the littlest thing that he thinks he needs to solve is problematic because of his lack of judgment and proper reasoning. So even though his doctor would say he is fine (she hasn't yet given him a diagnosis but that is par for the course), he is not normal and it does affect our life. Also, I think the number of people suffering from dementia is way higher than the official count. Why are we surprised when someone in their 90s is still sharp? Because most people get dementia in their 80s. In Canada, doctors seem reluctant to give a diagnosis until the person is disabled enough to require a move to a facility.
That is the hard thing to judge because one day you can leave them and then suddenly you can't anymore. I don't think there's anyway of predicting it.
There are many books with this information and doctors should tell you about them!
I agree!
No one will even speak to you! My MIL is 100, living alone. She refuses all help except her elderly friends who should be getting help themselves. At age 97, she broke her leg. My husband has Healthcare POA and tried to speak to the doctors. NO ONE would even give him the time of day. Talk to the ✋️. Freaking incredible!!!
@@pauladuncanadams1750 It can be BEYOND frustrating. I just don't get it. No other disease gets treated like this one.
OMG...... exactly... what you said....... they never told us anything...... I was taking my mom to appointment after appointment with neurologists, and other specialists.... because she couldn't walk well, her legs were numb.... she was difficult, argumentative....... and NOT ONE OF THEM told me she had dementia...... her GP gave her a dementia test...... and she passed it.......she couldn't tell time.... but she knew all the other answers....... and so they just did nothing and lied to me............ so that I couldn't research her disease..... and couldn't prepare.....either her or me for what was coming............... and so instead I faced the guilt of eventually having to admit her to a nursing home after she made me promise I never would........... and I still didn't know what the issue was....... until a few months before she died...... when they finally told me she had vascular-cerebral disease.......... and whole parts of her brain were dead due to plaque build-up and lack of oxygen in her brain veins....... and then COVID hit.... and we were no longer allowed to visit her......... so she died alone.
A year before she died, she did not remember that she was divorced from my father, or that he had passed away...... she thought he was on his way to get her and they were moving to Illinois (for some unfathomable reason. We have zero connections to the state of Illinois)....... and she was devastated all over again to find out he had died and he wouldn't be rescuing her from assisted living........ but most of the time she was really cagy...... and wouldn't put herself in a position where anyone would realize she didn't know what was going on............ she was smart.... she knew her brain was failing.... and she worked hard at making sure nobody else knew...... but I did. And when I would try to talk about it, and what it meant she would just get angry, because her main focus was on covering it up. She covered it up from at least 2011-2020....... just always cagy..... and when she was end-stage was during covid..... so she lost 70lbs. in the last 7 months...... no one would feed her, and eventually she couldn't swallow.......... so sad..... cuz this woman loved to eat.
Sorry she was alone. My mom was scheduled to move in when they called and told me she would likely be the last one in for a while. The next day they said she couldn't move until "whenever." It was another three months.
I really wish there was more support. Dad’s neurologist just said he had Alzheimer’s and “it is really bad.” I was left alone to figure all this out. I needed counselors or social workers or someone to help me gauge what stage he was at, when he should got into memory care, help me make the house safer, or literally anything at all would have been helpful. Honestly I got more advice by calling “A place for mom” than any doctor’s office provided. I live in the US, and there’s just no help at all unless you have lots of money and know how to navigate our convoluted “healthcare” system.
So true. I don't understand why there is no decent info for the caregiver. They are the ones who will need it.
you do a good job on ALL videos I am dealing with stage 4 caretaking right now
Thank you. It is difficult, best to you on this journey.
Mayo clinic is amazing and thorough and patient ,
Thanks for sharing your information!
Very helpful. Thank you so much ❤
Thank you!
Great video!
Absolutely bang on., seen them all.
Great tips! If someone who has dementia and becomes violent what are the options. That hasn’t happened yet, but what if???
I have learned a lot from these videos.
My MIL with dementia no longer has the desire to eat solid food (maybe 2 bites per meal) - looking for advice or what to expect in the coming months on how this plays out (lack of nutrition/calories). When would hospice be brought in? She is 80 and currently living at home with her able bodied 74 year old husband
No longer wanting to eat is usually the end - but even then they sometimes bounce back for a while. I would give hospice a call. I believe the life expectancy has to be six months or less.
My mother had the same issue, and I saw a video that said they get confused with a lot of food on the plate, so I now put one thing on her plate at a time and that really helped. Also texture of food bothers her too. In between meals I will have her drink a little Boost to help. And before pills, I give her a pudding to eat.
Definitely call hospice. Geesh, with my dad, it was decided on Friday by a Dr in this medical facility that I never saw as of yet. My sister was the medical power of attorney. I told her repeatedly in prior weeks he is asking if he is dying. She was in denial, wanted a zoom call, as if hospice was going to hurt him. Hospice couldn’t come until Monday for evaluation. Tuesday, waiting, waiting for pain meds. Finally, he gets morphine inside mouth, on his cheek, dies 30 minutes later. If a patient improves, then they are taken off hospice. After that, his funeral, this sister emails everyone and let’s us know this hospice offers grief counseling. What ?? No thanks, a little too late by everyone. I’ll find my own grief counseling away from siblings.
@@MagsChase1229I’m so sorry for your loss. 😢
@@Bubblegumswitch Thank you so much. Also, I really like your user name, just sooo original. As a kid, I had my yummy share of bubblegum. Long ago, a friend 14 yrs old, died suddenly, she chewed Bubble Yum Bubble Gum, grape flavor ! Your response and username just brought me back to memories of that sweet, cute and funny child.
very good information .... which is power .... mahalo nui / thanks a lot!
My husband and 2 of his family had it. One who was formerly very quiet, became violent. My husband had auditory hallucinations.
I know someone who was very nice who became violent. My mom struggled with hearing weird things as well.
Thats why I thank you so much for your videos ❤❤❤❤
You are so welcome
Thank you.
You're welcome!
You have really nice videos
Glad you like them!
Thx so much my moms 5 stage so true 👍
You’re welcome 😊
The medical system needs a huge overhaul across the board. Thank you for your videos!
So true.
Deb, really good info & you did a wonderful job explaining it! Thank you so much & God bless you and your loved ones!
Thank you!
This is very informative, thank you.
I would also like to add that I’ve read a book that in my opinion addresses the root cause of Alzheimer’s..and what you can do about it. If you’re curious , and open minded , it’s ahead of research right now. He writes the cause is from heavy metals, Mercury and Aluminum. Once you understand that we are filled with metals, it makes so much sense….get any of the books by Anthony William. I myself have been following his advice ( which most of it free on his website) for 5 years now and I have such clarity.. it’s hard to describe. Thank you again, My Mom is just starting this struggle.
Thanks! I haven't heard of that book.
My mother grew up in a AZ copper mining town. They got their water from a well which was likely tainted with a lot of copper. Her father and 3 sisters and one brother had dementia and have passed. She has dementia now as does a younger sister.
I got no help except medication
Go to Mayo clinic for serious issues
why is it sooo hard to get someone with dementia to go to family members house or out to eat with family ?
Good question. My mom was always fine with it, but we've seen others who become hermits. Maybe it's where they are in the disease??? Like they know there is a problem and don't want to look stupid in front of others???
My husband has been diagnosed with the alzeimer disease, I believe he is at stage 4 at this point , I am so scared of the future, not sure if I will be able to cope with this being myself very fragile ( chronic depression) but any info or hints are welcome ….thank you for sharing …😢
I'm not sure if this is possible for you, but look at care options now - whether it's in home help or assisted living. You can look into them all now and get an understanding of what they do and what their time frame is. Where I live, home health aides were in short supply pre-covid, now it's worse. Eldercare lawyers will often give free one hour information sessions on finances. That may help as well.
Can symptoms help determine the stage the person with dementia is in? When she went to the Neuro doctor they did tests and said she's moderate Alzheimer's with possible vascular accelerant but nothing about stages so we know what to expect next and how soon we can possibly expect these declines to happen.
Yes, the symptoms determine the stages. I have videos on that as well. A doctor never told us there were stages.
Am trying to figure out what
causing my short term memory loss is coming from. Thanks Debra
It may not be dementia. There are a lot of other things including food, meds, vitamin deficiencies, hormone imbalances etc. VERY important to see a doctor to determine the problem.
I wish I know what the numbered system is.
That will be my next video!
I've just found your channel. I believe that my husband is experiencing several symptoms of dementia. Are there meds that can help?
Check with his doctor about the meds.
@@lifeunderdeborahspalm-thed8114 thanks!
What does one do then, if the person is violent? Where do they go?
I really don't know what they do with those folks. I know someone whose loved one was sent back home.
I don't disagree with what you said - - so since the Neurologist didn't say that maybe my husband might need some calming meds (which he can't prescribe as it has to be a psychiatrist). I kept my husband home for 12 years, the last 3 were bad and I finally had to place him in memory care. All of the research was done by me through internet, videos, books, etc, etc. After 3 months he is on the Alz slide, but at least the caregivers take care of him. I will be broke soon, but working a job at 78 to help pay. I need another job. It is sad to watch this terrible slide.
Sorry to hear how hard it is for you at this point in life.
May I ask I know some of the signs is great my question Is what steps to take we went to a neurologist and he was just awful seeing him twice. He’s very rude to my husband. I have an MRI. My husband can’t go into that machine prescription for 30 days. Is there a timeline? Is there a place to go with questions?
Play❤
We started to notice very slight changes in my mom when she was 80. She is now going to be 88 in two months and is at stage five. We had her see a neurologist about stage three and he said she had mild cognitive impairment. We decided that there was no reason put her through an MRI or other testing when we knew she had dementia. Her PCP has been very good with prescriptions for her dementia, and memory patches. You just need to educate yourself and your PCP.
Dementia is something you wanna die from also
.most don’t get that luxury
Death by dementia is a long, slow process. Unless a person has another medical issue, it will likely be several years before they succumb to dementia.
How long does it take to advance from one stage until another
It can vary greatly from person to person. We were told that from diagnosis to death averages 10 years. My FIL was much shorter and my MIL was longer. There was a person in the assisted living facility that lived there for 20 years before he passed.