When does it become dementia?

Iris L.

I can't give a definitive answer.  I can tell you what I have learned.  My own neurologist doesn't like to diagnose dementia until he sees pathological changes on MRI or some other objective pathology.  This is why he still has me diagnosed as having cognitive impairment nos.  Nevertheless, my last MRI, done several years ago, showed enlarged ventricles.  I don't know how enlarged.  My neurocognitive evaluation has remained essentially unchanged, so he has not changed my diagnosis.  I won't be getting another MRI unless I have a major change.

On the other hand, the geriatrician that I consulted at a major university medical center which is also an Alzheimer's Disease Research Center, told me that I had to accept that I had dementia.  I didn't get a chance to ask him his criteria because I was too shocked and devastated, and fell into a deep depression.

I know that my cognition is below my highest level, which technically may meet the definition of dementia.  A dementia diagnosis usually includes difficulty with instrumental adls (IADLs.)  With a cognitive impairment diagnosis, IADLs are intact.  I can perform my IADLs now, but this is with the support from my memory medications and other Best Practices.

A dementia diagnosis can have legal implications.  So I am not ready for a dementia diagnosis.  I will continue with cognitive impairment.  I just know that I need to make accommodations in order to continue to live independently.  

Another factor is that I don't have anosognosia.  About 70 % of PWDs have anosognosia.

Living independently with cognitive impairment is EXTREMELY DIFFICULT.  Primarily because there are no guidelines.  I have had to learn everything from the members here.  Thank God they are here and willing to share!

After figuring out what I need to do, I have to put steps into play.  That's another challenge.  I'm still working on my steps.

Iris

Michael Ellenbogen

I wish I could help you with your answer but this is so complicated and sadly there are some any in the medical filed that just don’t know. First keep in mind dementia is a symptom rather than a condition. I know I use that term because I am unsure on what I really have because I don’t trust my diagnoses.

 

As far as you gong to the next level form MCI to some type of dementia the way I understand it has two effect two things that are impacted that you can no longer do on your own and need to rely on others to do. It is not only related to ADL’s . I truly believe because you are on your own you have probably had a lot of new neuroplasticity which is probably dealing what ever it may be. I believe that is also helping me but again I can not prove it.  I have seen those who have a will to survive and trying to delay this have succeed in many ways and I know you are one of those fouls. That in my opinion goes a very long way in the delay.

 

I wish I had the right information but so many of us are just not sure what we have and will not know until we are dead to do a biopsy. I know one woman who has now had a different diagnoses each month for the last 5.

 

All I would say to you is get all affairs in order and fight like hell to never need to go down that path. I no longer think of death but living and if it gets me Its not because I did not fight like hell to win this battle. In the past two months I cam very close to possibly dying from two car accidents. I was luck but I will probably die from something other than dementia. In another month I pan on starting the best time of my life and I know you could do the same. That is what you should think about. How to live life to the fullest as you deserve it.  I can not wait to travel again. I get my second shot tomorrow morning and I plan to go out again after that.  

KawKaw

I also give this question consideration every week or so.

My IADLs are all within my capacities at this time with the exception of finances.  That is something I struggled with my entire life.  Numbers float and switch on me.

Your plans are reasonable and sound.  Sometimes I am a bit anxious not knowing if I am going to begin sudden progression into additional impairment.

Like you, I am sifting through my belongings and donating as much as I can.  I have too much stuff still.

I need a will and other life planning paperwork in place, though my spouse knows in detail what is important to me.  It isn't that I have much to leave, but I want logistics to be simpler for my spouse and family.  Clear communication.

I am working to achieve best practices on a day by day basis. Another thank you for posting about them.

Will I be aware of my impairments past a certain point?  Will I become challenging to help?

So much unknown that thinking about it for long becomes a loop of sorts.

Instead, I need to focus on my day, my dogs, my spouse and the sunshine.

Edited to add:  Is it truly necessary to accept a dx of dementia?  If we are aware of our impairments, does it matter how they are described?

Does a dementia label or dx help us, I think is what I am asking.

Iris L.

I agree, Michael.  I'm not looking for answers, I already have my answer.  At a certain point it doesn't help to think too much about a specific diagnosis.  We have to be more focused on how we will live with these impairments day-by-day.  On how we FIGHT!

KawKaw, I can't think of any time that I had a sudden decline.  Everything was gradual.  And lately, I am essentially plateaued.  As Michael says, there are many who are fighting for their own lives.  I met several on the Alzheimer's Cruise in 2017.  

I view members who have been here before me as role models and guides for me to emulate.  I am not in despair the way I was years ago.

Iris 

Iris L.

Although I don't think continued seeking after a specicfic diagnosis is worthwhile, I do believe we need to become aware of and know our specific symptoms.  For instance, my memory is bad, but memory is not my major problem.  

What bothers me now is I have low interest in things and low initiation for tasks.  I can literally fiddle around and do nothing all day.   It seems to ebb and flow.  And this has nothing to do with Covid, I was like this before Covid.  Not a lot gets done, my mind seems blank.  

I believe this is related to my illness, but it is not something to discuss with people.  So I'm posting here.  

Iris

KawKaw

I only discuss such symptoms with people who are empathetic or who experience similar things.

I have apathy at times.  It seems to hit most when my mind cannot hold onto moment to moment clarity.

In the evenings, I used to read for a few hours.

Now I read a bit and then lie down and listen to the TV.  It is too much to watch it too.

Sometimes, the day seems to get away from me.  It makes me wonder if my mother was more content than I realized when her mind seemed far away as she progressed through dementia.