How did this diagnosis come out of the blue?


Hi, My dad who is 71 was just diagnosed with advance stage vascular dementia May 4th. He is a diabetic, heart patient, has copd. He has always taken his meds as prescribed. He did however lack at checking his sugar often enough and watching his diet. I started noticing things were off like his gate, posture, memory, strength, coordination. Took him to his primary care doctor and requested a MRI, had just a basic one not a contrast. Came back normal for a man his age per his primary care doctor. I wasn't having it! Knew something wasn't right. Took him and a CD copy of his MRI to a Neurologist, she couldn't believe what she was seeing. He had had so many strokes she couldn't count them. Has 10 holes in his brain and diagnosed him with advance stage Vascular dementia?! Prior to that appointment we didn't know he had one stroke little along too many to count. So my question is how did we go from just thinking something is wrong to advance stage dementia without his pirmary care doctor referring him to ANY specialist? Prescribing any new meds? Had I not requested a MRI would we have EVER found out? It seems like the ball was dropped and sadly its too late. I'm so mad and broken at the same time! All I can say is How was this missed for so many years? No early stage just straight to ADVANCED?! Would appreciate any advise. Thank you!



PCP’s don’t read the MRI first. The radiologist at the testing center does. If you can try to get a copy of the actual MRI report to see how the radiologist at the MRI center I interpreted it.
I would get all the reports and facts together before dismissing any of his doctors.
Helpful Answer (1)
Reply to Shane1124

It is good that he complied with taking his medications. I hope that pattern will carry over to any new medications he is prescribed.

His diabetes did not cause his vascular dementia. The strokes did. Don't be fretting and wishing you'd encouraged him to take his sugar more regularly and watched his diet.

You were very observant about his changes and very persistent in getting them taken seriously. Good for you! This is a shocking diagnosis, out of the blue, as you say. I'm confident that you'll cope remarkably well, once the shock wears off a bit.

Learn all you can about vascular dementia. Most general "dementia" information is based on Alzheimer's, and will not apply in total to your dad. For example, the 7 stages described for ALZ only apply to ALZ. Other kinds of dementia progress in different patterns.

My husband's PCP was totally useless once he developed dementia. For his general health, I suggest you switch to a geriatrician. And stay with specialists for his special needs!
Helpful Answer (4)
Reply to jeannegibbs

Thank you both for your help and comments. Yes I have my husband and brother that is here to help also but I'm definitely his voice. I can't get over the sudden progression and just doubt doctors but glad we got to the neurologist on our own accord. We get through this but was just taken back after all the missed signs. Why would a pcd read a mri instead of letting somebody read it that knows what they're looking at instead of just passifying us. We're gonna get through it and just keep our in your prayers
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Reply to Starnes706

My mom didn't have this dramatic a decline, but her PCP, who had known her for years, definitely missed the signs of cognitive impairment. My mom was a great showtimer, and only after having repeated meltdowns at home did we move her into Independent Living. Her new PCP, a geriatrician, referred her to a geriatric psychiatrist who insisted upon extensive cognitive testing, which revealed the extent of her limitations.
Helpful Answer (2)
Reply to BarbBrooklyn

I'm sorry to hear about your dad's diagnosis. I agree with GardernArtist about it being difficult to gauge the progression of a condition like Vascular Dementia. It seems to affect some people differently than others.

It seemed sudden when my LO was diagnosed too, but, then I started thinking back on things. There were issues that we didn't understand and had no idea it was related to dementia. Like, she was very protective of her cat. I thought that she just loved the cat, but, it was more than that. It was an unhealthy obsession with it, and I should have noticed then that something was off. Plus, weight loss and fear to leave her house. Still, once she was diagnosed, things progressed at an alarming rate. That doesn't mean it will happen with your father, but, for her, she went from running her household, paying bills, etc. to needing major support in a AL, wheelchair bound, incontinent, and no short term memory.

I'd discuss your questions with the neurologist, so they can address your concerns and allow you to be able to plan. I know it's so difficult. Do you have family members to help support you and your father?
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Reply to Sunnygirl1

W/o knowing more, it does sound like the PCP didn't make necessary referrals, or perhaps didn't catch the signs of dementia. Doctors only see patients for a short time during visits; your father may not have experienced any signs during that time.

This is one reason I would never give up any of the specialists in favor of a PCP.

It must be unsettling and sad to learn that your father has had so many strokes, and has other issues as well. I suppose it wouldn't hurt to write to the PCP and explain the missed diagnoses, and advise that you won't be seeing him or her again. He/she will probably "get his back up" and worry about malpractice claims, but maybe he/she will be more focused on other patients and improve that way the practice is managed.

No one is really going to know how your father segued into dementia, but the point is that he's there now. Dementia moves at different paces, faster for some people than for others. Of 2 people I know with similar dementias, one segued through the multiple stages over several years. Another's was short, perhaps a few years or less.

I'm sorry for the turmoil you've experienced; take some time to study dementia, think about the next steps and how his care will be managed. And give yourself some down time as well as this must have hit you literally like a "ton of bricks." It's a shocking diagnosis, so be kind to yourself as you plan your next steps.

I would focus now on getting appropriate meds and treatment through the neurologist who caught the issues.
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Reply to GardenArtist