Mixed Dementia new diagnosis not just Alzheimer's

Cobalt

My son's neurologist/Alzheimer specialist has decided his many challenges are due to an unknown "mixed dementia" instead of the working diagnosis of Alzheimer's and some unknown possible psychosis.  This is not often to get this diagnosis from a living patient but my son does have PET brain scans showing clearly all the areas of his brain that has plaque building up.  Those correspond to behaviors very clearly like Alzheimer's.  However because his brain structures are so unusual (due to congenital brain damage) that there remains no way to predict what changes are on the way.  And there are few options with medications.

One thing "interesting" is that he retains so many higher level cognitive skills while at the same time has shown he is unable to anticipate or imagine something happening at a later time or date.  He is clearly living in the moment much of the time. He can swing from almost normal conversation to a split-second change of being triggered and speaking nonsense syllables and sounds.  Pretty unnerving for us and caregivers.  And we just have no idea what to expect or prepare for.  Another odd thing is that his doctor has now decided his dementia may go on a long time, as in many years more.

Hoping to find others within this forum who are also dealing with "mixed dementia" or other conditions such as Alzheimers. My son is 42 so Early Onset.  He's in my home and I am one of the caregivers as he needs 24/7 care due to seizure disorder and inability to manage doing his own activities of daily living.

Iris L.

Cobalt, I may have asked you this before.  I was a pediatrician in my career.  Since your son has congenital brain damage, was his diagnosis ever developmental delay?  I would think that a dementia diagnosis would be reserved for people who had attained normal adult milestones. 

Iris

harshedbuzz

Cobalt-

Your situation is such a sad one on top of being difficult to navigate in the moment as well as plan for long-term.

Iris said: 

I would think that a dementia diagnosis would be reserved for people who had attained normal adult milestones. 


And yet people with Down Syndrome are commonly diagnosed with Alzheimer's.

dayn2nite2

I think in this particular case, I would reserve judgment on "mixed dementia" diagnosis because it's vague.  If I really needed to know what kind of dementia or how much was seizure or other-related and how much was degenerative along with what type, I would arrange to either donate his brain to a program that would include a brain autopsy report after death or I would pay to have a brain autopsy performed.  That's really the only definitive answer here and until that data comes in it's all just guessing and doesn't help you anyway.

I'm sure many neuroscience programs would be thrilled to make arrangements for donation of such a unique brain.

I could be wrong, though, because I was under the impression that my mom's brain was wanted for research - it was, but only if I paid to have the brain removed and transported along with the travel costs (for the person removing and bringing the brain back to the center) and I didn't even have enough money to cremate her at the end, so I ended up doing a whole-body donation through Medcure, but that included no information on what type of dementia she had or any other information about other illnesses.  I was just glad they handled all transport and cremation and returning her ashes to me at no cost.

DrinaJGB

My DH has been diagnosed with (2021)-after another MRI and NP assessment of "dementia due to multiple etiologies- mild severity". His neurologist explained that he suspects it is mixed AD and VD (which his father died of). Most mixed dementias include AD it seems.

He suffered an acquired brain injury in 2010 from viral encephalitis that was not treated with acyclovir in the timely window of 36 hours due to a misdiagnosis.Hence, the fulminating and necrotizing virus spread throughout his brain. He nearly succumbed and was on life support for weeks.

The most recent MRI revealed extensive encephalomalacia and white matter areas.

  Through the years he at first greatly improved and later plateaued in his recovery, but more recently has slowed down thus leading to his neurologist ordering the testing.

He was 52 at the viral invasion and a brilliant designer with a Master's from Rice. He has not worked in his profession since 2010. I am his sole caregiver.

The diagnosis has not made things easier nor has it really clarified much except to not expect anymore improvements, but rather a steady decline in functioning. He does still draw and come up with designs on a daily basis at his drafting table. He has poor judgement and insight and does not recognize the severity of his diagnosis which is common.He has no response to any kind of emergency.He has diminished pain perception. His personality has changed. In short, he is not the person he used to be, but, then again neither am I.

It has been a roller coaster ride for sure as you yourself have experienced with your son. On the last office visit to his neurologist just a couple of weeks ago he actually scored in the normal range of the MMSE. SO, there it is. No real answers and a very long and uncertain road ahead.

I wish you luck with your son.

Iris L.

harshedbuzz wrote:

Iris said: 

I would think that a dementia diagnosis would be reserved for people who had attained normal adult milestones. 


And yet people with Down Syndrome are commonly diagnosed with Alzheimer's.

Yes, HB, I am aware.  When I began to practice pediatrics in the 1970s, infants born with Down Syndrome rarely made it to childhood; my oldest patient with DS died at age seven.  Over the decades, people with DS are living to adulthood and older years.  My scientific mind wonders if their dementia is a progression of DS, or do they have dementia consistent with the pathological changes of Alzheimer's Disease.  (Is it Alzheimer's Disease dementia or Down Syndrome dementia?) But frankly, I don't have the cognitive ability to investigate that now.  I don't  even know the etiology of my own cognitive impairment.  Drina  reminded me that I might have had a viral etiology years ago; it's possible, although I have other possible etiologies.  A brain biopsy might help, but that's not happening!  I have considered arranging for a post-mortem brain pathology, but I don't think any medical group would be interested.  

Iris