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NeedHelpWithMom Posted February 29, 2024

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.

NeedHelpWithMom Mar 3, 2024
Anxiety,

I think about that myself at times! Once we hit a certain point we start to fall apart! 😁

Anxietynacy Mar 3, 2024
I might be very wrong, but I'm wondering if your loved one is say over 85 and just not his or her self, we should just assume it's a form of dementia, and learn all you can about it and treat them as it is dementia?

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JustAnon Mar 3, 2024
Yes. My aunt told me how frustrated she was that in all the signs my mother showed the doctor did NO testing and didn't refer her to anyone. This could have been a much easier road otherwise.

Beatty Mar 3, 2024
Hold no HIPAA (or Aus equivalent) in fact LO stated could do everything on own. So I have no idea if any check-ins, discussions or screening for cognition changes happens.

However, when LO last in ER, the ER Dr called to inform me & also ask questions as I was noted as NOK.

It still appears to be a somewhat grey area.

waytomisery Mar 2, 2024
I’m sure I spell it wrong because I spell
it the way people say it .
HIPAA should be pronounced with a long “I” vowel sound . Everyone says it to rhyme with PIPPA with the short “I” sound .

MargaretMcKen Mar 2, 2024
The reason I spelt HIPAA wrongly is that I have never known what it stood for, so I just remember the letters. It’s USA legislation that we don’t have here in Oz and so never learned in Law School. So now I just have to remember ‘Health Insurance Portability and Accountability Act’. I think that’s the first time anyone has actually set it out. Not quite sure how it fits in with Insurance Portability, but thanks, Geaton.

I still think it would be quite reasonable when first signing on with a doctor for everyone to provide a HIPAA(!) so that a doctor could make contact in an emergency or when necessary. Particularly for the elderly.

NeedHelpWithMom Mar 2, 2024
Ariadnee,

I agree that providing background information is important. Good idea about noting everything before the actual doctor appointment.

NeedHelpWithMom Mar 2, 2024
Geaton,

Thanks for posting the history of HIPAA laws. A lot of people don’t realize how these laws work. Doctors are very aware of laws and are careful not to violate them.

A friend of mine switched from being a criminal attorney (prosecutor) and went into malpractice and stays extremely busy working for doctors and hospitals.

Ariadnee Mar 2, 2024
If it's possible, ask if the doctor has experience with older/elderly patients. Or is the office geared towards a younger population? This may be very hard to do in isolated/rural areas since medical care is scarce. But, worth a try. Before going into the primary care appointment, call the office, ask if you can talk to them about what your concerns are with the person you're bringing in-keep it short, say one or two issues. That you need help, more information. That you want to be fully prepared for this important visit-and you need help to do so. Next aspect of this, is then a referral to a neurologist by the doctor. That would be the person who has the training, expertise and experience with brain health issues and decline. Wait time for appointments are at least six months. Call that office ahead of time-same routine-tell them you must have help. At the appointment, have all your information ready, questions too. If possible, keep this to the most pressing problems-say increased agitation, forgetfulness, wandering. Ask if they have a social worker on staff to help you source rescources in your area.

NeedHelpWithMom Mar 2, 2024
Way,

Remember the spelling bees in school? LOL 😆

I wanted one of those blue ribbons so badly! I finally won one year and was so excited!

Most of the time I lost out to other classmates when it came to spelling!

The nuns at my school would circle all grammatical errors with a red pen and take points off, even if answers to questions were correct! They were very strict!

My oldest daughter would challenge her teachers! I wasn’t confident enough to do that. She had a 99 on a test and she saw that a point was taken off on a correct answer and pointed it out to the teacher.

My daughter knew that she deserved a perfect ‘100’ score! She didn’t have any grammatical errors. I would have said, ‘Eh, 99 is good enough!’ The teacher told my daughter, “You’re right, and changed her grade to 100.”

waytomisery Mar 2, 2024
burnt ,
I agree the privacy thing can get ridiculous at times . It can make it harder to get care for an elderly confused person, who has no POA. But I understand the dilemma is there with no POA, which is why some doctors are more fearful than others to share information . No easy answers I guess , unless there are some changes made to privacy laws .

Conversely ,
when my FIL was in the hospital , the doctor asked my FIL who I was . My FIL said his DIL . Then the doctor was telling me how I would have to bring FIL to his office as an outpatient for respiratory tests and set up a Cpap machine every night and place it on FIL’s face. That doctor ASSUMED that FIL lived with me and that I was his caregiver . The doctor was being quite pompous in front of a group of students he had with him .
I answered with “ I’m not his POA and my FIL does not live with me, he lives in AL.”

NeedHelpWithMom Mar 2, 2024
Burnt,

I remember hearing the term ‘senile’ when I was a kid or ‘feeble minded.’ I had no idea what having ‘dementia’ meant.

I just wish that my mom’s doctors would have told mom and about the possibility of Parkinson’s patients having dementia.

I admit that I missed the early signs of dementia because I didn’t know to look out for it.

My younger brother has been diagnosed with Alzheimer’s disease and he had no idea what was going on with him.

Unless, we bring the topic up first, they don’t usually address the issue.

I do see lots of commercials now on television now about meds for agitation that can accompany dementia.

But when mom was diagnosed with Parkinson’s disease those commercials weren’t around.

Mom did get dementia later on. She kept thinking her memory loss was due to her seizures that she dealt with several years back.

waytomisery Mar 2, 2024
I am bad at spelling, grammar and punctuation to begin with .
Autocorrect sometimes is my friend , but not always when it puts a different word that changes the meaning . Uggh . It also frequently changes wouldn’t to would .
I like numbers and math . There is only one correct answer.

BurntCaregiver Mar 2, 2024
Absolutely doctors should take more of a lead in discussing dementia and mental health with their patients. I'd go so far as to say they should also be discussing it with the family member who almost always has to bring the senior to the doctor's appointment because that person is usually the one who is taking care of them at home.

I don't think they touch on it with their patients and the family members/caregivers because they don't want to deal with the reaction and maybe even a possible altercation. So they just brush it off and leave it to the patient or their caregivers to deal with. Then of course there's the privacy issue which oftentimes can be totally ridiculous.

I've had many care clients that I had to bring to the doctor and accompany into the exam room. Yet some doctors would ask that I wait outside when they talked to the client. They would completely ignore the fact that the elderly patient being escorted by a caregiver couldn't get to the appointment on their own. Or doesn't remember the doctor's name, but they will discuss their health needs with them alone.

These days I insist on having the contact information of a care client's POA/ health agent and an emergency contact number of a local person who can be at a client's home quickly if needs be. I also insist that the client's health agent is honest with us so I know what a situation I'm sending a caregiver into. No surprises and no minimizing what the person needs.

@Geaton

Waytomisery and everyone else here is an adult. No one needs you to correct or "clarify" anything. Everyone including yourself knew what Way meant about 'HIPPA' and 'HIPAA'. Nothing wrong with spelling something correctly in your own comments and responses without correcting someone.

NeedHelpWithMom Mar 2, 2024
My autocorrect drives me crazy! I don’t always have the chance to edit its errors!

I am allergic to penicillin and I used to have to look up the spelling every time I filled out forms for my doctor stating my allergies!

Geaton777 Mar 2, 2024
My device always wants to autocorrect it to hippo

waytomisery Mar 2, 2024
I always spell it wrong .🙄

Geaton777 Mar 2, 2024
For clarity: it's HIPAA, not HIPPA.

"The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is a federal law that required the creation of national standards to protect sensitive patient health information from being disclosed without the patient's consent or knowledge."

Source: https://www.cdc.gov

NeedHelpWithMom Mar 2, 2024
Way,

So true! A HIPPA consent is a must for caregivers.

waytomisery Mar 2, 2024
My doctors offices always ask for a name and number of someone that can be called in emergency , information shared with / messages left . But that’s probably not enough.

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 . 🙄🙄

NeedHelpWithMom Mar 2, 2024
You made your point very well, Beatty! So many people have witnessed this behavior.

Beatty Mar 2, 2024
Yup.

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?

NeedHelpWithMom Mar 1, 2024
I agree, Margaret. If the patient denies any cognitive impairment there’s a problem. It is sad for families who can’t speak with their parents doctor due to HIPPA laws. Yet, the doctor has to abide by the HPPA stipulations.

Beatty Mar 1, 2024
Cx 😪 (((hugs))) 💙💙💙

MargaretMcKen Mar 1, 2024
It may be a waste of time for doctors to discuss these issues with their patients. Only too often, the patient won’t admit to any problem.

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.

NeedHelpWithMom Mar 1, 2024
Oh my gosh, cx.

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.

cxmoody Mar 1, 2024
Need,

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. 😭

NeedHelpWithMom Mar 1, 2024
Anxiety,

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.

Anxietynacy Mar 1, 2024
Also I think a lot of people are concerned about what stage the person your care giving is in, people are all different, correct me if I'm wrong, but I feel like no 2 people with autism are the same. They have there own little quirks, I'm most likely have some undiagnosed dyslexia. But I never had an issue reading, more so numbers and writing.
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.

NeedHelpWithMom Mar 1, 2024
Great post, Geaton!

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.

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