Do you feel medical professionals should take more of a lead in discussing cognitive decline and mental health issues with their patients?
My mother died in 2021. As I read through this forum, I reflect back to my own experiences with my mother.
Mom’s primary care doctor would ask her if she was depressed but didn’t specifically address any cognitive issues. Her neurologist did cognitive testing during his examinations.
Mom had Parkinson’s disease and dementia.
Mom’s doctors didn’t bring up the topic of dementia.
I had to do research on my own to educate myself on mom’s condition.
Sometimes, I found that I had to ask the doctor specific questions and prompt them to do further testing.
Do you feel doctors do enough to educate patients on their condition? It seems like some doctors only cover the basics. Unless we ask questions about specific things we aren’t prepared for what lies ahead.
I feel badly for elders who don’t know the proper questions to ask their doctors and don’t have any advocates to help them.
Good communication is so important between a doctor and the patient/patient’s family member.
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May I ask who got the appt with the neurologist? Because this was the proper referral. Did the MD do that?
It was only after coming here, did I even have a clue that she dementia.
Sheesh.
You bring up an interesting point.
So, mom started having seizures and went into the hospital for tests.
She had been healthy up until that point in time. The only surgery that she had was a hysterectomy.
Anyway, when she was in the hospital for her seizures, the doctor told me that my mom had Parkinson’s disease.
I knew nothing about Parkinson’s disease and I told the doctor that mom never mentioned anything to me about having any unusual symptoms.
The doctor said to me, “Your mother is displaying all of the signs of Parkinson’s disease and she needs to make an appointment with a neurologist.
So, I have to credit the doctor at the hospital for picking up on her symptoms.
You’re right though, our doctors don’t have very much time to spend with patients. Do you see this staying the same or improving in the future?
Yeah, it’s frustrating not to know what is going on or what to expect in the future.
So when and how did you discover your mom’s dementia?
You’re right about this forum sharing information on dementia. I was helped greatly by this forum.
Anyway, I had written a note about the not showering , confusion etc and asked that the doctor talk to my mother about assisted living . I gave it to the nurse . The doctor did bring up AL which Mom shot down of course . At the end of the visit the doctor left . About 5 minutes later the nurse came in and told Mom that I needed to fill out a new paper . So I left the room with the nurse and the nurse gave me a pamphlet for home care and the name of a geriatrician for cognitive testing . The nurse looked at me and said that the doctor asked her if she thought my mother had dementia. The nurse told me that she told the doctor , she’s been “ noticing cracks “. The geriatrician did diagnose .
My FIL had a mini cog test in AL which I had to argue for them to do .
Of course he had dementia , but the primary that saw him at AL would never put a diagnosis in his records . She said to go to a neurologist but FIL refused . This caused problems during subsequent hospital stays. They even did cog tests in the hospital during two different stays which said he had declined . They were done by OT before going to rehab. No doctor at the hospital would not officially diagnose or have a neurologist come see FIL . They just said we had to follow up with a neurologist as an outpatient . I told them he won’t go and they still said they could not have a neurologist see him in the hospital because it wasn’t what he was admitted for . He was there for CHF .
FIL had asked how he did when he had the first cog test that was done in AL and was told he had cognitive decline but FIL flipped out and said his brain was as good as ever.
FIL never got a diagnosis on his record. Just some notes from doctors saying “ possible dementia “ , to follow up with neurology.
My nephew had a similar experience with my sister . These doctors don’t want to deal with dementia symptoms . They just tell you to go to a neurologist , which can be 6-12 months to get an appointment. Plus you have to get LO to go .
I do think the primaries are better at addressing mental health . They always ask about stress level , ask about any anxiety or depression symptoms.
How many people go undiagnosed without the help of family members being there?
I’m really curious how these situations are handled when a person doesn’t have a family member to speak out about their behavior.
I guess those without family end up in the hospital sometimes . Maybe the police find them wandering, confused .
A few years ago I witnessed a car accident and stopped . The one driver ( who caused the accident ) was elderly and seemed to have dementia when I was speaking with her . She had denied hitting her head or anything . She was confused and kept asking me where her daughters were. She didn’t remember having the accident or where she was driving to . I told the police when they showed up .
I often think of dementia when you see in the news about an elderly person found dead by the landlord and they have been dead for days and the police is looking for any next of kin . It’s sad.
It was thoughtful of you to stop and help. It is sad that these things happen.
Remember dog table umbrella and how to spell world backwards.
This has been my experience - direct family experience, workplace experience & reported by friends too.
I get it though. Our brains are part of us! Our brain health is part of health!
I think a good Doctor does introduce hard or awkward conversations. It must take some skill indeed to bring these up & maintain trust of the patient, ensure their patient always feels respected.
While there is medication to help PD, for high blood pressure, advice (or maybe medication or surgery) for obesity - all risks for dementia.. there is no real, effective proven drug to cure dementia. Maybe in the future if there was, screening would be done better. Just as breast & bowel cancer screening is.
I've read that because people are living longer than ever before the world is heading towards a dementia epedemic. Dementia-friendly signage & education is a growing area. Countires that cultural shunned 'old age homes' are now building them out of necessity.
You’re right that these discussions aren’t initiated by the doctors.
It’s interesting, because most of us don’t really think about how aging affects us or our family members until symptoms start showing up.
This is why I wish doctors would approach these subjects with us so we could be prepared sooner and know what to expect.
Honestly, I didn’t even know that there were any doctors who specialized in aging patients until I heard members of this forum speaking about geriatric physicians.
It sounds like your doctor is on top of things and is addressing aging related issues.
The doctor told me that she recommended palliative care first, meaning no surgery for any reasons.
Actually, I found that nurses were more forthcoming about discussing issues far more than doctors do.
The nurse told me when it was time for us to start looking at hospice providers.
I don’t find that doctors encourage facility care either. Even though, they must know that it’s becoming a burden on the family members who are caring for their elderly parents.
Overall, I find that nurses have the most compassion for family members dealing with aging issues.
Your thoughts came to my mind also.
I think doctors work with the here and now. Its up to us to advocate for ourselves and our LOs. The thing I hate is I have a Specialist, end up in the hospital and the doctor in charge takes it upon himself to change my Specialists orders without consulting with him. To me, this is how mistakes are made.
Some people want to know and others don’t want to know about what their future holds.
I absolutely agree that it is important to be an advocate for our family members and ourselves.
Sometimes, I found that I had to ask the doctor specific questions and prompt them to do further testing."
Yes, this is how you advocate for yourself or someone else. This is what my Mom (an RN for 45+ yrs) taught me from early on. Also back in the day in order to get referred to see a specialist you had to learn what questions to ask and how to express your medical problem in order to move things along.
We don't live in the era of Marcus Welby, MD anymore. Docs can't spend an extra minute on something that doesn't have a billing code and *you didn't set up the appointment to include time to discuss this issue when you made the appointment*. One must do this or you put the doc in a pickle. This is how it is in my home state (MN) -- it may differ elsewhere.
Also, docs don't want to piss off their patients so they aren't fond of telling people to stop driving or go into a AL -- and especially don't want to tell patients that they have dementia. They can't tell them this unless all other possibilities have been tested for and discounted, since almost all dementias don't have a definitive single test. Imaging: yes. Test: no.
Plus, if an elder comes in to an appointment with a family member or support person who is insisting the elder has dementia... if the doc (in a single appointment) doesn't come to the same conclusion, what should s/he do? Which one should they believe? Especially if the other person is not the MPoA or MR?
"Do you feel medical professionals should take more of a lead in discussing cognitive decline and mental health issues with their patients?"
Since I'm not sure what your definition of "lead" is, until there is an actual diagnosis I think the most they can do is point people to resources to educate them or maybe refer people to a specialist like a neurologist.
By lead, I mean ‘lead a discussion’ when it becomes necessary. Some people don’t have anyone to be an advocate for them and they don’t know how to advocate for themselves.
I do feel that your comments are accurate. It’s just something that I think about from time to time. We certainly don’t live in a Marcus Welby era these days.
Overall, I am pleased with my doctor. She answers all of my questions and does inform me of important medical information. She encourages me to do preventative care.
So I'm sure no two people with dementia are the same. I don't really feel what the need to identify the stages. Depending on age and weather or not they are driving.
You’re exactly correct. Dementia affects everyone differently. Same with Parkinson’s disease like my mother had.
Yes, autism is the same too. Really, everyone has their own individual circumstances and challenges no matter what conditions they are dealing with.
That’s why it’s such a complex issue. Nothing is ever ‘one size fits all.’
Everyone reacts differently to meds as well so it’s challenging to treat dementia. There isn’t a cure for dementia today but I certainly hope and pray that one day there will be.
You asked about diagnosis.
With my mother, it had been more of a diagnosis of exclusion, rather than a diagnosis from a Neurologist.
Mom was acting crazy when she first moved in with us.
She paced.
Shadowed.
Anxiety to the utmost degree.
Had a memory of 5 minutes at the most.
Frightened of anything and everything.
Refused to bathe.
Her house had been FILTHY. This was out of character for her.
She forgot to eat. Lost TONS of weight.
OCD about finances.
She was tested for Thyroid issues and UTI. Had an MRI. Tested for various vitamin deficiencies. Colonoscopy.
REFUSED further testing. No WAY could she have endured hours of Neurological testing.
She has been seen by geriatric docs. and geriatric psychiatrists at her MC. The consensus is that she has Alzheimer’s, since she doesn’t have risk factors for Vascular. No aphasia. No crazy behavior changes. No hallucinations.
Her memory is about 30 seconds now, three years later.
Her body is just fine. She will run out of money for MC before her body is ready to go. Her mind is GONE.
It just makes me sick to write all of this. She was a brilliant seamstress. Made my Prom gown and wedding gown. Now, she can’t even remember that. She sleeps under quilts she made. No memory of those, either. 😭
I teared up as I read your posts. My mom was an excellent seamstress too. She also made my dresses for Mardi Gras balls, school dances and my wedding. Not to mention Mardi Gras costumes, Halloween costumes, dresses for church, play clothes and even pajamas! The only thing that she didn’t sew were my school uniforms.
Man oh man, you have one of those heartbreaking stories about dealing with dementia on this forum! Just like so many other posters do. It’s truly tragic.
I am so glad that you have placed your mom. I will keep you and your family in my thoughts and prayers.
Thanks for sharing this information with us.
What might help rather more would be for doctors to take the initiative in asking (even requiring) the patient to sign a HIPPA form, so that the doctor can discuss the issues with the family member doing the care. I see no reason not to make this a standard requirement for a practice, if only for use in an emergency.
Nurse "How's your memory?"
LO 'Fine. Why wouldn't it be.'
Doctor "Have you had any falls recently?"
LO 'No. I used to fall. I don't anymore'.
Dr "What happened to your hand?"
LO 'I hurt it when I fell over".
Dr "I see. When did you fall over?"
LO 'A few days ago. It was annoying because I fell over again that week too".
Dr "I see".
The Doctor DID see but what could be done?
I like Margaret’s idea of naming someone on HIPPA being mandatory, or the doctor refuses to be their doctor . Plenty of people post here , that can’t do anything with a demented parent because they aren’t on HIPPA forms.
Without a family member on HIPPA, Facilities won’t talk to family unless they are trying to force someone to take them home from rehab . Then all of a sudden it’s ok to talk . 🙄🙄
So true! A HIPPA consent is a must for caregivers.