Does diagnosis matter?

rleon

Hi all!

My father, age 84, has been experiencing memory loss over the past 5+ years. My mom cares for him, and they have been doing just fine together, for the most part. She was hesitant to get him diagnosed with anything official, then covid hit, and now... here we are, still without a diagnosis. She is concerned about my dad's pride and hates talking about him with medical professionals in front of him, but he has started to decline even more, recently, and I think she knows she's in over her head.

So, my big picture questions is...is there a benefit/up-side to having an official diagnosis? My brother and I are pushing for a doctor's appointment and other follow up, but my mom is dragging her feet. Is this a battle we should pick, or is the effort of getting an official diagnosis more trouble than it's worth at this point?

Thank you!

R

jfkoc

Please assure your mother that discussing your father's health with his Dr is essential to your father's well being. The easiest way to do this is getting written information to the Dr before an appointment.

The two main reasons for diagnosis are 

1. There are some causes for dementia which are treatable 

2. Different drugs are used for different dementias. The same drugs used for Alzheimers are not advised for Lewy Body..

Please go to the top of this page and select ALZ.com.  You will find a wealth of information.

And please give your mother an extra hug from us...

M1

Welcome to the forum R.  One of the major reasons for taking him for evaluation is to be sure that any potentially treatable causes of things that can mimic dementia (thyroid problems, B12 deficiency, hydrocephalus) have been ruled out.  One strategy many people use to avoid those awkward conversations in front of the doc/provider is for your mother (and you) to notify the office of your concerns, in writing, ahead of the appointment.  It should be specific about behaviors you've noticed, even if  it sounds negative.  You can also use "fiblets" to get him there:  such as, Medicare now requires this visit or you'll lose your insurance.  

As you probably know the medications currently available for disease treatment are a mixed bag--some will say the main reason for specific diagnosis is to avoid medications that are contraindicated in certain types of dementia (Frontotemporal and Lewy Body, for example).  But there are a number of medications that can help with certain behaviors, anxiety, or sleep fragmentation, which commonly accompnay dementia. 

Hope that helps.  Good luck, none of this is easy.  Another point frequetnly made to new folks is to make sure your legal ducks are in a row--powers of attorney for finances and healthcare, wills and trusts, etc.  Certified elder law attorneys are the best resource for this (look at nelf.org).  

JennD724

New here! My mom was starting to show signs of dementia, but somewhat independent (living in a condo). We moved her to an independent living apartment in a senior living community, thinking she'd benefit from some friends and activities (because she didn't have either) and had some in-home caregivers helping with some tasks. She didn't adapt - for two months, she got worse and worse, unable to put clothes on properly, unable to eat meals properly, wandering around and getting lost, going to other peoples apartments to use the bathroom, and a couple times locked herself outside in the cold. It's been a pretty drastic decline. Now, they have told us she needs memory care, but they have a wait list in their facility up to maybe a year to a year and a half.

So my sister and I are on the hunt for another memory care facility that can take her. In the meantime, she's living with me, so she can be safe. This is the hardest thing...harder than having toddlers. And I am struggling. She needs direction from me on every single thing she does, and gets anxious (she suffers with anxiety/used to have major depression), if she doesn't know where I am. She won't do any activities, won't watch any tv shows, says everything is boring, and basically I'm tasked with keeping her busy/entertained the entire time she's awake. Haven't had time to shower, can't leave her alone, etc.

I know that's a lot of up front info...all to ask, has anyone else seen such a sharp decline so quickly? In a matter of months, she is a different person. We've had her brain MRI (no stroke or other indication), we've done UTI tests (she had one earlier in October, but it cleared up). Was it the move to the new apartment, from her old apartment, that shook her world so much, that it caused the dementia to worsen to such a degree? And now, another change - she's with me. And soon, another change - she'll be in memory care. I feel helpless.

If you made it this far, thank you. 

mommyandme (m&m)

R, welcome to this forum but sorry for the circumstances that bring you here! 

Besides all the great responses above, we needed a staged diagnosis to get her LTC insurance to activate.  

Jenn, welcome also.  If you don’t get responses specific for your situation you may want to start your own thread by the “Add Topic” option at the top of this forum page.  My specific situation doesn’t mirror yours except for the fact that I’m caring for my mom at home.  I’m sorry your mom took a downward turn.  This is a horrible journey. 

rleon

Thank you so much for your reply and your kindness - it means the world. And I'll check out the additional resources - thanks!

rleon

Thank you so much for this. Love the term "fiblets" and such a smart idea to contact the doctor in writing before the next visit.  Will for sure confirm our legal ducks are in a row as well. Thanks again for your response and kindness.

rleon

Thanks for the welcome, and insurance is another important factor to consider. Will bring up with mom. Thank you!

JennD724

OOPS! Just realized I was replying to an existing topic, not starting new. Forgive me!