Checklist for diagnosis appointment

GTPremium

 My wife of almost 40 years almost certainly has significant cognitive impairment. Enormous short-term memory loss, inarticulacy, huge challenges with executive function, as in, being almost incapable of using iPhone and laptop any more. (Some days better than others, which I'm learning is "normal"). 

Next week we have the neurologist's appt at which we (her family and friends) hope to learn the actual diagnosis from her MRI two months ago, her battery of cognitive-assessment tests from last April, family input to her GP, and her medical record in general. Here's a little checklist I've sent to the neurologist's office; hope it might be helpful as a baseline for questions for others in this forum: 

            What IS the diagnosis?

• What type of dementia? (assuming it is that) 

• What stage?

• What biomarkers? Beta-amyloid; tau; cell death, etc.

• Any possible linkage to other factors: e.g., father’s Parkinson’s? [Kind of moot in our case, but may help others ] 

What is the diagnosis based on? 

• The MRI only?

• The MRI + neuropsychological (cognitive assessment) tests?

• The MRI + cognitive assessment tests + neurologist's in-person assessment?

• The MRI + cognitive assessment tests + neurologist's in-person assessment + patient's medical history ?

• Any relevance to the family's observations? (family and friends have been living with this for some time now and have plenty of empirical inputs to share.)  

Any possible treatment? 

• Or medical intervention to at least slow the rate of decline?  Or too late?

• Lequembi – even if it becomes available on Medicare?  

What urgent "must do" issues?

• We are all extremely concerned about [patient] driving because of the overall safety issues and also because of liability if in an accident.  

What care?  What recommended plan?

• How to address with patient who is in denial / lacks insight into condition?
• Joining patient support group? [requires some self-recognition of a condition] 
• Signing up for clinical studies (e.g., through Alzheimer's Association) to help future sufferers?

Next appointments, if any? 

 

M1

Hope the appointment helps GT.  Frankly, I would not have your expectations too high.  Especially regarding---it likely won't make any difference to her.  When I started down this road (and I am a physician FWIW), I thought that having our doctor tell my partner that she had dementia would result in an "aha" moment after which she would recognize that she was impaired, needed my help, and would need to defer to me in certain things.  I've told this story often on these boards--our doc laughed at me when I discussed this.  It didn't make a darn* bit of difference, and to this day ( now in MC for ten months) she doesn't think there's anything wrong with her.  We had short-lived drug trials of Aricept and Namenda, neither of which she tolerated.

Do definitely, definitely solicit their help on the driving issue.  She needs to stop, and you likely need the doctor to take responsibility for telling her that, if they will.

Good luck.

dayn2nite2

Most of your list will probably not be addressed.  If you can get them to put the word “dementia” in the conversation consider yourself fortunate.

I would agree with keeping your expectations very low and expect that they’ll acknowledge something is wrong, offer scripts for donepezil or memantine and “see you in 6 months.”

Iris L.

GTPremium wrote:

 What care?  What recommended plan?

 

• How to address with patient who is in denial / lacks insight into condition?

• Familiarize yourself with anosognosia, which is the lack of insight that you notice.  This is a characteristic of dementia and is distinct from denial.  There is no point in confronting her because she truly believes she is fine.  Learn the work-arounds from the members.

• Joining patient support group? [requires some self-recognition of a condition] 

This message board is an online support group.  You can also search for an in-person support group.  Some chapters offer free caregiver classes.

 

• Signing up for clinical studies (e.g., through Alzheimer's Association) to help future sufferers?

clinicaltrials.gov

 You will have a lot of questions.  Read a lot of threads because there are a lot of answers here.  Also read alz.org and read the onlinecreading material. 

Iris L.

 

Midwest Gal

In addition to asking these good questions I also find it very important to provide the neurologist with a full written report regarding your observations regarding your spouse.  I go to each consult with a document that I update between consults that includes;

Updates since last consult, my DH current strengths, current status with bathing, toileting and shaving, food, dressing, money, behaviors, new concerns and questions along with a list of all current medications and medications tried previously and why they were adjusted or DC.  Yes, they do keep their own records, but this method has really helped.  If you are new to this journey, it's best to start this med list right away.  

It's so easy to get caught up in that week or day's events when you are setting in front of the doctor and you really want him to get the full picture, but mostly it's easier to share some of this information on paper other than announcing it in front of my DH.  I give the document to the nurse to share with the Dr prior to his coming in the room.