School me on early diagnosis

Stellar Daughter-In-Law

I am concerned that my 76 year old mom could be showing signs of dementia.  

1.  What are the most useful screening tools?  

2. Imaging: Is there a usefulness to obtaining to any kinds of imagining tests, such as CT, MRI, PET?  Do they show any kind of baseline that would be helpful to track?

3. Should she be evaluated by a neurologist or other specialist?

4. What is the usefulness of early diagnosis vs waiting until symptoms become more pronounced?

Extra info:

I'm a really aggressive patient advocate and appreciate detailed medical info.

My mom is taking two anticolinergic meds and I am concerned about their effects.  She loves her PCP, and I think he is ok, but no genius and not always steeped in the most recent research.

My dad, brother, and she herself have all noticed a change too in her forgetfulness, word retrieval.  I have noticed subtle demeanor changes, change in concentration, and today she forgot how to bake a pie crust.  She is the pie queen.  This was quite upsetting to me.

I was on this board over a decade ago when my FIL had very complex frontal temporal dementia.  It was a life saver. 

harshedbuzz

Stellar Daughter-In-Law wrote:

I am concerned that my 76 year old mom could be showing signs of dementia.  

1.  What are the most useful screening tools?  

2. Imaging: Is there a usefulness to obtaining to any kinds of imagining tests, such as CT, MRI, PET?  Do they show any kind of baseline that would be helpful to track? 

This lays out an appropriate approach to diagnosing dementia which is really ruling out other conditions that mimic it. 

Diagnosing Alzheimer's: How Alzheimer's is diagnosed - Mayo Clinic

3. Should she be evaluated by a neurologist or other specialist? 

Based on what you shared below about the PCP, I would move to a specialist. 

4. What is the usefulness of early diagnosis vs waiting until symptoms become more pronounced? 

Earlier gives you some time to get the legal paperwork in place while your mom is competent to sign it. Some people benefit from medications for Alzheimer's that are intended to improve function and the sooner the better if they are such a person. If your mom is very early stages, she may want to work on a bucket list or decide on medical directives. 

My mother and I have always disagreed on getting dad diagnosed. I had concerns about him going back to personality changes as early as 2005 and significant memory lapses in 2008. She brushed off my concerns with denial and excuses. It wasn't until she almost died with him as advocate and he had a couple of psychotic episodes that she agreed to getting an evaluation. Dad was diagnosed in late 2016 and died in 2018.

Now that it's over she claims she's grateful she didn't know all that time. That said, she was a caregiver to a challenging individual for years and took it personally. It might have been easier on her heart to have known it was the disease talking. And then there's the $350K he lost daytrading- in retrospect I was right about shutting down his internet access. 

Extra info:

I'm a really aggressive patient advocate and appreciate detailed medical info.

It's good she has an advocate even if there are limitations around what you can offer her besides safety, love and assistance with ADLs when needed.

My mom is taking two anticolinergic meds and I am concerned about their effects.  She loves her PCP, and I think he is ok, but no genius and not always steeped in the most recent research.

Reading this, I would research a memory center near you and make the appointment to start there. 

My dad, brother, and she herself have all noticed a change too in her forgetfulness, word retrieval.  I have noticed subtle demeanor changes, change in concentration, and today she forgot how to bake a pie crust.  She is the pie queen.  This was quite upsetting to me.

It's great that you seem to be all on the same page. Or at least all reading the same book. I couldn't get mom into the library. I noticed the demeanor first, too. Subtle, but there. 

I hear you on the pies. Dad worked at a highly awarded hoagie shop in high school. As a kid, this was the only meal he ever prepared and a real treat. I recall buying all the ingredients and bringing them down to his house in MD thinking it would make him happy to show off. He looked at the ingredients as if he had never seen them and denied ever having made hoagies. 

I was on this board over a decade ago when my FIL had very complex frontal temporal dementia.  It was a life saver. 

I love your screen name.

HB

Iris L.

Stellar Daughter-In-Law wrote:

My mom is taking two anticolinergic meds and I am concerned about their effects.  

----

Hello Stellar DIL.  I remember you.  I'm still here.  Anticholinergic drugs are problematic!  They impair cognition and may be linked to dementia.  Please consult a dementia specialist as soon as possible.

Some medical causes of dementia are reversible if caught in time.

Best wishes to you and your mom.  

Iris

Suziesb

Stellar,

I noticed changes in my mother that were questionable similar to ones that you are describing. Even right down to the pies! She had been making them for years and couldn't recall how one day. It made me so sad.

She passed away last year and I drop into the board once in awhile.  Now, ugh, I hate to say this but my partner is showing signs of early onset Alzheimer's. He doesn't know yet what I suspect. His brother is an internal med physician and we have just begun discussing it together. One step at a time. Do our homework.... advocate....and if we need it, this board is here for us, Thank God.

Take care.

Suz

Emily 123

Hi Stellar,

I’m so sorry about your mom, but If there is a good side to this it’s that you’re aware of how MCI can subtly show up. I would recommend talking with her PCP to get the ball rolling in ruling out other causes (UTI, depression, thyroid imbalance, etc) and then getting a neurologist or geripsych referral for an assessment and diagnosis.

I would consider switching your Mom’s care over to a geriatrician for her regular care if you were only using the referrals for testing and not management, if that makes sense.  Sooner would be better to get your mom on Arricept, if it’s AD, as it may slow the progression in some people.  Sooner will also give your family time for legal planning (mom AND dad) and to think about downsizing and simplifying as needed.  It’s a good time to have mom and dad discuss advanced directives too, and if they use a hospital system or physician that has an online chart portal, then get the POA and advanced directives uploaded to those. 

My mom was diagnosed with ‘likely’ AD based on cognitive testing by a geripsych. At her age (91) we’re not going to do CT, etc. Those imaging tests can help define the type of dementia, though the cognitive testing will give you a better idea of where they are compared to others their age, and can track a decline over years. However, with dementia being different for each person, a quick browse of the forum will show that a test score does not necessarily correlate to how well they’re navigating day to day.

Stellar Daughter-In-Law

Thanks for all of your responses. It is a good reminder to see a geriatrician. I doubt she would change her pcp but maybe one could do testing and med management as it relates to cognition? Or is that something a neurologist would do. With my FIL neurologists were completely useless and unhelpful. Maybe it was his case or the doctor himself. It was at a university teaching hospital in their dementia care practice. Shocking how unhelpful they were.

Thankfully my parents are super organized and proactive - they have very solid advanced directives, POAs, and review them every few years. They have already downsized into a three bedroom apartment. They have excellent long term care policy, and because we have had a lot of need in our extended family for caregiving, we know a lot of great caregivers should it ever come to that.  We talk really openly about death in my family. I know her wishes.  My brother and I have an excellent relationship and have been able to divide caregiving tasks well in the past. My SIL really loves my parents and would do anything for them too.  I know how horrific this disease can be and how ugly families can get around it having gone through hell with my FIL and his family.  Thank god my family is so very different and well prepared.  

I’m sad and worried and more motivated than ever to spend time loving her up. She and my dad are coming to visit next week and Im already planning a vacation with them for August.  She is my rock!  We had two good phone calls today where she was much more engaged than usual. It gave me hope at least for today and I’ll take it!!!

Iris, so good to hear from you!