HELP! Why Wont The Doctor Diagnosis Dementia?
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- Опубликовано: 25 ноя 2023
- Are you caught in the frustrating loop of suspecting dementia in your loved one, only to be denied by doctors? In this eye-opening video, we dive deep into a shocking revelation that could be the reason behind this denial.
Join me as we explore the untold story behind dementia diagnoses and why your loved one's struggles might not meet the criteria. Don't miss out on the key insights that can change everything!
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#DementiaDiagnosis #CaregiverInsights #HealthcareRevealed #DoctorDenied #CareblazerCommunity #DementiaAwareness #caregiversupport
It’s our mission to make dementia caregiving easier for families caring for a loved one with Alzheimer's disease, frontotemporal dementia, lewy body dementia, vascular dementia, or any other type of dementia. We believe that in order to create a more dementia friendly world, we must first create a caregiver friendly world. That's why we create free educational training videos like this one so that anyone with an internet connection can get access to dementia care information.
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DISCLAIMER: The content of this video - or any content by Dementia Careblazers - does not replace the need for healthcare professionals. Our content is not healthcare advice and is not a substitute for your own healthcare. It is for general education and demonstration only. Do not use this content to self-diagnose or self-treat any health, medical, or physical condition. By consuming content from Dementia Careblazers, you agree to hold harmless and indemnify Dementia Careblazers LLC for any and all losses, injuries, or damages resulting from any and all claims that arise from your use or misuse of this content. All content or recommendations on the company’s website, social media, blog, or email series. All comments from Dementia Careblazers’ are expressions of opinion only.
In case you haven’t met me, my name is Natali Edmonds and I am a board certified geropsychologist. That means that I am a clinical psychologist who specializes in working with older adults. One day, while hiking a trail, I came up with the idea for Careblazers and I decided to see if posting videos online could provide help to the many other Careblazers in the world who don’t get to have help come directly to them in their homes. I hope that this work helps you in some way on your caregiving journey.
#careblazer #dementia #dementiacare
My family is so grateful for your channel and the information you share!!
One of the very frustrating things about getting the tests and cognitive assessments we have been able to do is that they rely on the patient's reporting about whether or not they can drive or manage their finances. These tests are always in a room in a medical office building. My family member can charm her way through a test. I keep wanting to say to the clinician, "Just take her to the grocery store! That will give you so much more information!"
I went through the same thing! We were once again in ER and once again a nurse specialist who worked for the Hospice Doc came in for an evaluation and my mom answered all of his questions. And as far as he was concerned she didn't have dementia. I told him if he would of gotten there 30 minutes before the hospital gave her Ativan the interview would of been different. My mom could charm her way through a test also.
This is really interesting. Such good info as always. My son was telling me about his friend whose grandma was having hallucinations, delusions, trouble thinking clearly as well as some physical issues of not feeling well. They were sure she was developing dementia or other problems due to her age. However, after many doctor visits someone (not a doctor) suggested they test the carbon monoxide levels in her home and as soon as they brought in a detector, the alarm went off. After they had her furnace replaced and her air was clean, she was totally back to normal.
Despite writing my husband's primary care physician regarding my husband's thinking deficits and delusions, he was no help. Ultimately, I went through the court system and my husband was committed to an inpatient mental health hospital. 15 days later my husband was discharged on anti-psychotic medication. At the time of the discharge conference, I was informed that had they known my husband had moderate dementia he would not have qualified for their care. So, am I glad my husband hadn't been labeled with "Dementia?" Yes. His inpatient stay helped to make the diagnosis and the medication helped for a while. Once more, my suspicions were validated, and my husband's ongoing care was followed by a geriatric psychologist. My question is why are dementia folks excluded from the mental healthcare system? Sometimes we may need their help.
I fought - begged - our general practitioner to help me get my husband help for what I suspected was dementia for three years! 3 Years!
Finally I fired him and got my husband into a Gerontology group (no easy task) and they diagnosed my husband with mild to moderate dementia. It was the best worst day of my life. I was validated, but it was already so late in the game, it demarcated the beginning of the end.
I am so incredibly angry with the GP for ignoring my pleas, refusing to acknowledge the videos I had of my husband's decline in walking, the journal I kept of the many behavior changes, the refusal to let me come in and have a meeting with him.
I am a passive member of CareBlazers - RUclipss has worked best for me and my schedule.
THANK YOU for this video Dr Natalie.
I hope this helps others who still have time to catch this disease in its early phase & take proactive measures.
I'm so sorry that was your experience. Sadly, what you describe is common for many families.
❤
That is awful. I'm so sorry. ❤
I just spent the ENTIRE DAY in ER with my mom - she claimed she just realized I was her daughter. She had forgotten decades of memories, but knew the date, the year, her birthdate, etc. so they sent her home. Even though they WATCHED her say that she didn't realize until yesterday that I was her daughter! So frustrated!
Is stealing a part of dementia? I am the caregiver of my 72-year-old mother. Who has been diagnosed with dementia. Last Sunday my mother stole toilet paper from our church. I was so embarrassed when I realized what she had done. I know I did not handle the situation well. I returned the toilet paper and asked my mom why she would take it from church. She said we didn't have any left at home. The truth is she forgot that we have a guest room where we store the toilet paper. Which is upstairs and she has an apartment in the basement. She was out in her own bathroom downstairs. I know her memory is getting worse. What she was able to do 3 months ago, like remind me of running out of toilet paper she is no longer able to let me know. Being a caregiver is hard especially when things change and you're not able to keep up.
My Husband definitely was showing signs of Dementia, he was awful to live with. He finally agreed to see a Geriatrian and he said he hasn't got Dementia so he has put him on tablets for depression. He wouldn't let me go with him so l have to except what he has said. Thanks for this channel.
I have gotten so much help from the videos. My dad has an MD and brother that is functioning on beliefs from decades ago. My dad was never independent. My parents were 'codependent' and lived by old sexist rules. My dad felt it beneath him to do womens work. He was a farmer and also hd my mom do the secretarial work. He also only went to 8th grade and his only job was working with his dad on the farm. So most evaluation of his independence would be lifetime and social. He was ok until my mom, after 65 years together, passed. His whole social life is gone cause everyone passed before him. He lived on the same farm for 90 years. Never experienced many activities common today. The farming also changed. He has been emotional. I know from my experience of some emotional work and caretaking that stress and emotions can interfere with thinking straight. There is a problem in how traditional men deal with emotions. It was womens work to deal with emotions. So there is some severe emotional neglect going on. It was believed men are rational. The male family members tend to jump right to believe any "wrong" thinking means there is something wrong overall. Thus if on is emotional, there are dismissed from any rational conversation. Its avoidance of dealing with emotions. On the other hand, the women family members, having avoidance of emotions as a child, tend to over control and try to manipulate the emotions prematurely resulting in not being with the emotional one but to dismiss them as wrong too. This, in my family research, is an intergenerational problem from the time when obedience was the priority in family. Thus my father tends to be obedient until it goes too far for him. Then he gets nasty and now if he stands up against things it is called dementia but its the same behaviors he always had. He also always was emotionally dependent expecting women to meet his desires and emotions. Today these behaviors are called abusive of men at other ages. Years ago my aunt told me you just put up with it. They didnt have a choice. I have been told that many older men are sexually inappropriate with caretakers and they say it is normal although standards have changed for what is appropriate male behavior. I think my father does not have dementia as other family members believe because once you stereotype a behavior with a certain word it is prejudice and discrimination. The history of the medical communities does show that social behaviors can be wrongly categorized into a medical problem. Drapetomania for slaves that ran away. Paranoia and delusions for sexual assault victims. Clearly it seems to be a time of reckoning for learning more. It is so hard to tell how to perceive this but the bottom line is that the diagnosis for dementia can be false when educational, cultural lifestyles and emotions, relationshops and social dynamics with laws change are not clearly understood between people. I have a degree in women studies. Any different educational background can bring different views to this. I am not POA and am up against community standards which my dad is subject to that dismiss his entire life history yet he may have physical source of dementia cause of his age...but I have big doubts. He also may be experiencing massive trauma.
My husband has been diagnose with MCI a year ago. I feel like he is declining, and his next evaluation is not until Spring 2024. It has been a time of grieving for me in not having the husband I once did. We still do a lot together but he is very self absorbed, and not connected with me emotionally. Been a tough time for me. I very much love your channel. Thank you Natali
Same situation here. My husband has also. Its like he's living in his own dimension! No connection, no emotion really. Very flat and unaffected by anything, even things that greatly upset me, he just stares at me like he doesn't know what to do. We don't have a diagnosis. I have no name to put to these heartbreaking changes in him.
@@catbee1452 find support for yourself. You do not have to walk this journey alone. See if you can get him evaluated. It is easier for me to accept that it is part of the disease process, than to face the personal rejection it would otherwise be.
I am 85 yrs old and have been dealing with friends and family for about 30 years they keep changing the rules medical care is very changing all the time I have Dr s in the family and they admit it that they guess a lot it is not easy, However some times they get lucky
I helped my mother regain most of her cognizance with minerals and vitamins as well as coconut oil.
I knew I was making progress when she began to resist the minerals and vitamins and could finally speak intelligently and say "My mind is perfectly fine." and " That is 16 pills, I hate pills." Unfortunately, she still had short term memory problems like "This book seems familiar." when she had been reading the book for over a week. I was too late to completely "cure" her but it was better to have a feisty mother than a vegetable.
Good for you. What a change.
Sounds like your mother's dementia was related to nutritional deficits, most commonly this is due to Wernicke's encephalopathy, which is specifically due to thiamin/vitamin B1 deficiency. If caught early, it can be reversed and/or improved. It can progress to Korsakoff syndrome though, which is considered irreversible. My mother had Wernicke's as well, and it improved initially, but her poor nutritional habits resumed and she eventually progressed to Korsakoff's.
@@mizlindsayk Exactly, that was my guess as well. The two percent milk that she continued, and was encouraged by her doctor, along with Lipitor was killing her. My other family went right along with her doctor, so she didn't have a chance. After a month and a half, I had to return to my home in another state. She did OK for a little while, but "Doctor's Orders" took charge and lack of cholesterol and B vitamins and minerals caused her dementia to come back with a vengeance. I am convinced that most doctors do not understand cholesterol which is necessary for older people. When I questioned her doctor about the Lipitor and her needing cholesterol, she said in a loud, authoritative voice "I am her DOCTOR!" I said well "I am her son."
My husband had more of a memory problem that would come and go. For instance, he would think that I was an old girlfriend (we were married 65 years). He would think that someone else was around. He would forget the way somewhere. But looking back, I wonder if what he had was caused by UTI s. He had one every few weeks and he was always worse when he had one. However, I didn’t realize that at the time. As far as I can remember it was never discussed with the Neurologist. The Uriologist never discussed it. I have just thought about that since he passed away. He was in a personal care facility because our children were afraid that he might hurt me. I had problems with him because after 64 years I found out that he had affairs about 20 years ago and I had thought we had a great marriage and I just couldn’t deal with it . He would never discuss it with me. 8:13
@@dorthabailey4072 I guess in the long run he did. For some reason that reminds me, years ago, a good-looking woman kept calling me Bill, who thought I was someone from her past. After about 5 times, I looked at her and said, "I'm not Bill, but I can be if you want me to be." She turned red and walked hurriedly away. She never called me Bill again.
My dad is elderly & wealthy also widowed. I know he needs diagnosis. A much younger lady has latched on to my Dad & she controls everything.our county cannot do anything to help. He has changed will & she is set to gain from it- he gets angry when i tell him he has to get help
It's great you mention that improvement is possible. The more I learn the better I can communicate with his VA medical people. I think 'mild to moderate' would be the best description .... and definitely IADL. ...... caregiver support pay would be nice ....
If you qualify for the PCAFC program, it's possible to receive pay. If you don't qualify now, you may qualify later. 💖
@@DementiaCareblazers they denied pay last time I applied, so time to get things documented in his medical records. thanks for your help
Thank you so much for this video! My husband had his first neuro psychology appointment yesterday and this info was invaluable!
It’s interesting you say this could have started 20 years ago. I have been trying to get my Moms doctor to do an MRI to verify if she has dementia or Alzheimer’s. Her doctor tells me if she does there is nothing we can do to treat it. But I want to know if she has a real medical problem or just plays me with guilt to take care of most everything for her. My dad died at age 46, mom was the same age. She always managed the household bills. After dad died she couldn’t seem to manage and by age 55 I started taking over her bills. I’ve been doing them for 20 years now. She is getting worse. Her memory is terrible. We have the same conversations over and over. She is having problems managing her prescriptions. I don’t know that I can trust she is taking them properly but she doesn’t want me to handle them yet. Which is interesting because she wants me to handle everything else. I am not handling this well at all. I am already tired from managing her life for the last twenty years. I first thought this was just her guilt tripping me. But now while researching this could have started back then. Her mom passed from Alzheimer’s at 81. We knew she had it. When I was 12 she wouldn’t open her apartment door because she didn’t know who we were. She passed about 9 years later. Am I correct that an MRI should be able to show if she has dementia?
My husband is showing a LOT of instrumental behavior challenges; I've taken over finances and ALL household/administrative chores, he has forgotten how to write a check, can't figure out how to fix things anymore or work with technology even though his career was in IT. Recently he handed me a piece of paper with some things he had written down. He has very distinct writing. I asked him why he was giving me the paper, he said it was mine because it was my writing, not his. In the ADL domain, he often forgets to eat, is showering way less than he used to, re-wears the same clothes until they are just in obvious need of a wash, no longer flushes the toilet even though he knows it upsets me and is unable to follow directions. Yet the docs say he only has MCI. How can this be?
How do I go about finding a neuropsychologist who will evaluate him thoroughly?
Another great post. Thank you!!!
Glad you enjoyed it
Do you have a video/advice for how to get someone to a neurologist who refuses to go?
We have mycotoxins from mold, but my husband also has two APOE3 genes. Most cognitive issues are short term memory and executive function issues
Your videos are very informative and you make them so easy to listen to. Thank you so much ❤
Thank you so much!!
.husband was diagnosed in April 2022.
He declining so fast!! His next neurologist appointment isn't until April 2024. I can't wait that long.
He needs another mri as soon as possible
This is very interesting, my husband has been seeing a neurologist for about 15 years for REM Sleep Disorder and about 4 years ago started having a lot of mobility problems. The neurologist says he has Parkinsonisms and put him on Carbadopa/Levodopa 2 years ago, which has helped a lot with mobility. For about a year and a half I have been asking the neurologist about his cognitive decline and if he should be on medication for that but keep getting negative feedback like "there isn't really anything going on in that field" and "medications for cognitive decline aren't helpful". Still no diagnosis other than he has Parkinsonisms. He can no longer do bookwork or write checks, I have to show him every day how to use the tv remote, it's difficult for him to have a conversation because he can't think of the words he needs to express himself. On vacation he gets extremely confused about directions and he is starting to get directionally confused here at home. He has some difficulty getting dressed but not always. Seems to me that there is more going on than Parkinsonisms, and it's extremely disheartening to be told that medication for cognitive decline wouldn't help him.
Parkinson’s disease is a form of dementia.
Same kind of symptoms my husband was having. He was diagnosed with Parkinsons during the pandemic lockdown & it wasn't till 2 yrs later that he was finally seen in our local Memory Clinic where Dementia was diagnosed. Although a shock, it has been very helpful to get support in different ways as a result. He has finally been able to restart Donepezil meds this year (after having to wait for a Pacemaker for slow heart rate) which has made a big difference cognitively. So I would say push for an appointment with the appropriate clinic. In UK it's the Psychogeriatricians, but more easily known as the Memory Clinic. xx
Thank you @hummingbird2536 I have been able to finally convince him to seek a second opinion but our appointment isn’t until March. You are right, even though I suspect dementia it would be a relief just to get a diagnosis because then I feel like he can start to get the correct medication.
@@Catsfancy I'm very glad you've now got things moving for the appropriate appointment & sympathise about the wait. We had a similar wait for the 1st appointment. Do you have a primary care doctor you can talk to for support while waiting for this? Wishing you all the best.
@@Catsfancy4:03
Thx! 👍
Can you do a video on how to get a dementia patient to take medication when they refuse. Also, how do you get a dementia patient to stop removing their depends and clothing, essentially at night and whenever they can sneak.
Hi @Justbehappy0922
Here is a video you may find helpful, ruclips.net/video/lidBukKoEIQ/видео.html
Check out our website for more helpful information/resources www.careblazers.com 💖
This channel has relevant and easy to digest information. I subscribed today. I’m wondering if you could direct me to a video talking about how to approach diagnosis for loved one who has clear signs of moderate dementia but doesn’t think they need to see a doctor for mental decline. .
Hi @judyhall8269 So glad you found us. I'm happy to help. Here are a couple of links to some related RUclips videos.
ruclips.net/video/VBujKHME814/видео.html
ruclips.net/video/-bg1W1LDmTM/видео.html
Also, here is a link to our website if you'd like more resources:
www.careblazers.com
Thank you Dr. Natali! I experienced something similar last year with my mother. Is there anything being done to educate physicians regarding the early signs/prevention of dementia? Or at least the acknowledgement that there is a gap in medical knowledge? Especially in a managed care setting (HMO)?
The dr after several long sets of test by memory specialist and social workers. They told me and my mom that dad had dementia. But 2 yrs later when dad was much worse with reasoning and spending money they no longer had. His Psychologist suggested getting guardianship. I asked Psychologist for a leter or something to prove dad needed this type of care / supervision and all she gave me was a letter stating he had mild cognitive impairment and was receiving medication. Along with regular visits.
To me it seemed so mild and dismissive compared to what we had been told 2 yr prior. As well as dad being so much worse. Mom and I felt like this wouldn't even be worth getting the lawyer to look at it. Dad passed 1 yr later and his primary put dementia as cause of death.
From 1st signs until dads passing was approximately 9 yr.
Now that the winter and holidays are coming it seems mom is " slowing down ". She's not taking as much care of herself or her lil dog as she did just 2 mo ago.
Anyone have any suggestions for me about mom. I want to keep her active and at her home as long as possible. But my mom and sis are expecting me to move in and take care of her. Mom's 79 she has 2 living sisters in early 90's grandpa was 93 when he passed. So unless there is an accident she should ideally have more than 10 yrs before she needs live in care. And my mom is more outgoing and independent than both her sisters. My mom is the type of person to sit and let someone else do the work for her and then complain about they job they did. Lol so no I dont want to move in when she's still able
Hi there,
Sorry to hear about the passing of your dad. 💖
Here is a video you may find helpful related to your question about keeping your mother active: ruclips.net/video/f7XoWzoSnxo/видео.html
Visit our website www.careblazers.com for more helpful resources.
Sending you love and strength.
Help!! Mom has FTD dementia and sufffers from Ekbom Syndrome- the fixed belief of bugs infesting her and her pet are so strong. She has resorted to unsafe behavior to pick away at her own skin and the dogs. It moved into a darker belief that she and her dog are “very sick” and “dying “ we are at a loss for how to help!
Hi there, So sorry to hear this. Here is a video you may find helpful related to hallucinations: ruclips.net/video/x_-tTOSL_UM/видео.htmlsi=yuXrFJPEuKOseOep
can I please ask if someone like my mother-in-law has Alzheimers how is it different from dementia thanks for these videos I work in care and don't have a clue which is which im thinking vascular has a lot of problems osteoarthritis back not good seems herself at the moment found out in September
Alzheimer's disease is the most common type of dementia. There are multiple types. Here is a video that can help: ruclips.net/video/lq1a8LY2ZNw/видео.htmlsi=r7eZfPMxrxGXLuOl
My mom has difficulty with all of these. She will not do any of these on her own andd i have to really prod her
Wow my husbands neuropsychology group told us with frontal temporal dementia that’s not true and have diagnosed him with FTD they did do about 5 hours of testing
Interesting, they said he didn't need impairment in functioning (activities of daily living?). That isn't true. There must be some level of impairment. perhaps his is slight with impairment in instrumental activities of daily living. For any dementia diagnosis at this point in time both cognition AND functioning impairment must be present - even with FTD. That being said, I encourage you to bring this up with them if you are concerned. Given that he has a diagnosis, I would guess they are doing everything they can.
@@DementiaCareblazers they are doing what they can the pet scan backed up their diagnosis and we are going to try a research trial
Yes my husband has mild dementhia what can I do to keep him in this or gettig his memory to improve .
Hi @PatriciaMaciel-lz5mm
Thanks for reaching out. Here is a video you may find helpful: ruclips.net/video/400RwMHnlXQ/видео.html
Also, check out our website, www.careblazers.com for more resources and helpful information.
Dr. Nat, my mother is now so fearful to walk, she doesn’t trust her legs. I give her accolades and encouragement but is buckling of the legs normal?
Bring this up with her PCP or neurologist. I also recommend an evaluation by a physical therapist to see if there are things that can be done to help strengthen.
What can one do to improve vascular dementia?
Hi there,
Here is a video you may find helpful: ruclips.net/video/ODmAfLv2W5Q/видео.html
Check out our website www.careblazers.com for more helpful resources and information 💖
What type of Dr other than a Neurologist can help? We did all the standard tests, but Dr offers no real solutions. Only meds. Husband is only 63. So frustrated!
Hi @cathy2854
Thanks for reaching out. Here are a couple videos you may find helpful:
ruclips.net/video/lZgmH5kuvdE/видео.html
ruclips.net/video/r8i3N7983KU/видео.html
HELP!! 😭 this literally just happened yesterday!! First let me say moms Neuro Nurse Navigator referred us to you and I just can’t tell you how much I’ve appreciated you helping us with this journey.
So what happened? Primary saw results of Neuropsychology test and told mom she doesn’t have dementia. Yet initial MOCI tests by Neuro group in August indicated early stages of dementia and was told to start thinking about memory care. I can’t tell you the mountains we’ve moved (sister & husband moved cross country, brother been living with her for past 4 months), the 💣 that mom set off with her anger and has finally accepted the Neuro help and our assistance to help her. I’m so afraid that she won’t listen to anything the Neurology team will tell her next week because the Primary has already given his assessment. 😵💫🫠
Hi @janeljohnson853 We are glad you found us and we appreciate the referral from your mother's Neuro Nurse Navigator 💖.
Here is a video you may find helpful: ruclips.net/video/-bg1W1LDmTM/видео.html
Visit our website and learn more about the Care Course with Live Support where you will have a chance to ask Dr. Natali any of your caregiving questions and get personalized feedback. www.dementiacareclass.com/joindecember