Doctors Aargh!!!

BrownSparrow

My father was diagnosed with VD in 2019 at a prestigious university's memory clinic. The report was sent to his PCP who completely ignored it and has done nothing to help him. 

Not only does he have VD, but also gets tremors and double vision. But his doctor has never sent him to a neurologist. To me, that is mind blowing!

My mother has been in denial so she wasn't pushing for anything to get done. 

I live many states away from my parents and they have no local family. They refuse to move closer to one of their children. I finally stepped in and went with him to an appointment with his PCP to at least get a referral to a neurologist. The PCP starts asking my father how his memory is and, of course, my father thinks he's absolutely fine. 

I didn't get into too much detail with the PCP about the memory lapses because I didn't want to embarrass my father. Plus I thought the doctor's report that had already diagnosed him in 2019 should be more than enough. 

Finally the doctor says he thinks it would be a good idea to see a neurologist but my father is probably just having age-related memory issues. I was very close to blowing a gasket but held it together because I had met my goal of getting the referral.

Can anyone help me understand why his PCP refuses to acknowledge the VD diagnosis? Is this a common occurrence with what your LO went through? Thank you.

CaringMate

BrownSparrow...I hate to be the one to say this, but coming from a strong connection to the medical community I can tell you that what you experienced is all too normal.  Sad, but normal.  Many, if not most Primary Care Physicians are not trained or educated to deal with patients who are experiencing Dementia.  Doctors focus on what they can cure and since there is no real effective treatment or cure for all the various forms of Dementia, they prefer to write off the symptoms as old age related and not what it really is.  Even worse than PCP's there are Neurologists who also do the same...kick the patient and their symptoms down the road.  Until medical science finds a cure for this horrific disease, what you experienced will continue to happen.  Stay vigilant and push for treatment as best you can.  While the medications that are currently available are by no means a cure, they can help in the short term to ease symptoms.  Don't expect a miracle from either the doctors or the treatment, but a little help should be coming your way.

In my ten year struggle to provide care for my partner who had FTD, I went through at least a half dozen physicians who refused to diagnose him properly.  I wouldn't let up or back down until I found an amazing doctor in a leading medical center specializing in Dementia and could finally take a breath.  I kept a record of symptoms and did my homework and was able to provide the doctor with an extensive health history that finally led to a diagnosis.  It is beyond sad that most doctors, like most lay people, have no true understanding of this disease.  So, you are not crazy and your reality on this issue is correct.  Stay strong and keep the faith and you will ultimately find a doctor you can work with.  

Marta

I would be curious to know whether you actually asked the PCP about that report from the memory clinic.

aod326

How infuriating!! Do you/your mom have a copy go the report that diagnosed VD? If you have a copy, or if your mom is an authorized person on your dad's medical privacy thing* at his doctor's (*had little sleep last night and can't remember the name of the thing!) and could get one, I'd suggest you send it in advance to the neurologist. At the very least, you can contact the neurologist's office to tell then such a report exists and where he was diagnosed. You can give them info, even though they won't be able share any info about him with you.

Same with his PCP. Even though PCP won't discuss your dad's issues with you (unless you are listed on the privacy thingy), that doesn't stop you giving him details of your dad's memory/behaviour issues, and also expressing how much you would value his support with your dad.

One other thing which you've probably already thought of: bear in mind that the neurologist your dad sees needs to have stated experience/expertise of dementia. Not all neurologist do, by a long chalk.

Good luck.

BrownSparrow

I did mention the report but didn't ask the PCP point blank why he didn't act on it. If he wouldn't have given the referral to a neurologist, I would have gotten into that. 

My dad doesn't remember the diagnosis so I try to minimize mentioning it in front of him. 

BrownSparrow

Thank you for sharing your experiences. I agree with everything you said. 

I think the doctor is out of his comfort zone and I think my dad has been able to dupe him for years into thinking he's fine. I have low expectations for the neurologist visit but at least it's a step in the right direction. 

Iris L.

BrownSparrow wrote:

 I think my dad has been able to dupe him for years into thinking he's fine. 

Your dad has anosognosia. This is a common characteristic of the dementias.  The PWD truly believes he is fine and will become upset if you try to convince him otherwis.  So don't do that.  Learn work-arounds from the other members. 

Also, many professionals are unfamiliar with the concept of anosognosia.  That's why they rely solely on self-reporting and resist getting confirmation from the family.

Iris L.