Will a distinct dementia diagnosis make a difference?

topgumm · August 22

My mother is 88 years old and has been demonstrating mental decline for many years. She lives with my Stepfather who has been doing the heavy lifting almost exclusively for the years of this decline. 8 months ago, they asked to move closer to me because they knew they'd need more help as time progressed and they wanted to be closer to family. They requested an independent living situation close by, sold most of their belongings and with considerable assistance from my wife and I, moved from 5 hours away and from a different state to a facility very close to us. My Mom's memory has gotten considerably worse in the last 8 months. She doesn't remember agreeing to the move, dislikes her current living situation and wants to go "home". She seems to enjoy visits from my wife and I, our kids and their children and my siblings, but it is unclear if she remembers from day to day who all she has seen. She has imagined my brother calling her and weeping that they moved away and was convinced that my sister was angry and disrespectful during another call. Neither of those things happened, but it was real to my Mom. It is not uncommon for my Mom to ask what the weather is like 3 or 4 times in a 5-10 minute period. Yesterday, my Stepfather said that after my wife and I visited a couple of days ago my Mom asked who the man was that he was talking to. The man was me. She's never shown me any indication that she doesn't know who I am, but maybe this is evidence of even further decline. I share all of this because we have not had a physician or other provider actually diagnose Mom with any type of dementia. They've been living close to us for 7 weeks now and I have arranged family practice and specialty medical appointments for both of them but no provider has ever seen Mom specifically for memory related issues. She has mobility problems and rarely leaves her room. She has little patience for medical appointments, gets antsy very quickly and wants nothing to do with extended evaluations and tests. Getting her to agree to going to see someone for a diagnosis that might only confirm what we already know--that her memory is failing, that as she puts it she is "fading away"--would likely be a stretch. It seems to me that finding someone who will help us all--Mom, Stepfather and family--cope with Mom's specific behaviors is more important than a medical diagnosis.
I would like any opinions on how others see this and what type of providers have given dementia patients and their caregivers and families the greatest degree of comfort and reassurance. Thanks.

mabelgirl · August 22

prayers for you and your family as you witness your mothers decline. My opinion is that a diagnosis opens the door for appropriate medications that may be needed. My mom was living with my brother and for years we kept urging him to take mom to either a geriatric doctor or a neurologist, it took him nearly 4 years to do that. By this time the paranoia, delusions and hallucinations were getting prominent. The neurologist administered a cognitive test and confirmed what we suspected. He prescribed medications to help with the behavior and to help with memory. He ordered an MRI of the brain but she never had that done because she then moved in with me. I immediately took her to senior doctor office to ensure she was getting right care. They adjusted medications and added a few. They advised while a MRI was going to show the part of the brain impacted that nothing can categorically tell us what type of dementia, that primarily behavior, symptoms and the type of decline points to the type. I feel the medications are vital not only for those around a PWD but I can only imagine the frustrations our LO feels as their brain fails them. Search the posts on here and you’ll quickly see your mom is exhibiting much of what a PWD does. You should also insure legalities are in place such DPOA. 🙏🏼

M1 · August 22

I agree with mabelgirl that you want the legalities squared away, but I do not think a specific diagnosis would help or is even possible. Statistically the likelihood is that it's vascular/Alzheimer's or a combination of the two. There is no medication that would make a difference given her advanced age. She may need medication for behaviors, including SSRI's or atypical antipsychotics for aggression/agitation, but you don't need a specific diagnosis for that. I think I would try to find a geriatrician who is comfortable prescribing on an as needed basis. At 88, I would treat her very gently and with palliative intent.

topgumm · August 22

https://alzconnected.org/discussion/comment/220153#Comment_220153

Thank you for your comments and prayers.

topgumm · August 22

https://alzconnected.org/discussion/comment/220166#Comment_220166

I very much appreciate your comments and recommendations. I have done some research on antidepressive medications and dementia and there doesn't seem to be a lot of hard science supporting their use. I also know that antidepressives can increase the likelihood of a fall which is the last thing my Mom needs at this time. We are working on the DPOA (had an appointment with the trust attorney last week but both Mom and Stepfather got COVID and we had to reschedule). Still considering a geriatrician for some additional direction.

Lynn24 · August 24

I agree. My mother had an MRI two years ago; however the MRI didn’t show dementia. She is undiagnosed but has declined severely now that she is in the last stages of this disease. Seroquel has helped tremendously over the past 6 months, since she became very agitated and aggressive earlier this year.

Anonymousjpl123 · August 24

Hi @topgumm glad you found this forum. I received solid advice and support here since my mom’s decline required my intvention. She too lived out of state, and I had to move her near me after my dad passed suddenly.

A couple of years ago I left no stone unturned - neurologist, gp, neurosurgeon, geriatric psychiatric NP - because I thought there was surgery that might greatly improve her condition. In the end, she was diagnosed with dementia, Alzheimers. She didnt get the surgery. And it turns out it might not have mattered.

What has mattered quite a bit is the care she is receiving. Having someone with deep expertise working with dementia was a game-changer. She was able to get meds to help reduce her anxiety and distress. The other care needs are about making sure any other medical needs are met and that she is safe and as comfortable as possible.

I highly recommend getting support for your family. This board has been great but i found myself needing a lot of extra support to stay in this marathon. Having family on the same page helps enormously. Maybe keep an eye on your stepdad too to make sure he’s not too stressed out.

Lastly, any big changes can really kick up progression in PWD. That’s par for the course. 7 weeks is not that much time and you may find things are different as she adjusts. Hang in there.

H1235 · August 25

My husband would always greet his mom by saying “Hi it’s your favorite son ——“. They would laugh and it helped remind her who he was in a fun way. It worked for a long time. I’m not sure she always knew who I was or her great grandkids I would bring, but she was always happy to see us and enjoyed the visits. I thinks that is what is important. My mom on the other hand is grumpy about everything. I’m not sure she enjoys my visits. I thread a line between being there for her and not angering her. She must be so miserable being angry all the time(we are trying to figure out the right medications). I understand the side effects of some medications are not good, but being angry and miserable is not good either. To your original question, I don’t think an official diagnosis of dementia is important. Someone who specializes or is comfortable with geriatric patients is important. My mom’s family doctor was not helpful. She now sees the doctor at AL and that is better. This is so difficult. Good luck.

topgumm · August 27

Thanks to all of you who have responded to my original post. I appreciate the time you've taken to lay out suggestions and things to think about. The suggestions about finding a dementia expert to work with and keeping close watch on my Stepfather (who for now is the frontline caregiver) are very important. I'm hoping the PA at the independent living facility they are at now will be able to help. She's been good with basic prescriptions and other needs. The search for a geriatrician that specializes in dementia seems a little more difficult, but not impossible. Thanks for the encouragement and I wish all of you the best in your journey as well.

Mona D · August 29

Hi there! I'm at the beginning stages of the dementia journey with my mom. Her decline started about 2 years ago and we were told it was age-related. Now she's gotten significantly worse. My MIL passed with Alzheimers so I know what I'm seeing. We recently took mom to a highly recommended geriatric neurologist in Lubbock. We go back in a few months. He's working on determining what type of dementia it is. That's what led me to read your post. She had an MRI of brain and spine. They'll be doing other in-office tests when we go back. Doc says determining what type will help determine treatment. I guess we will see. Best of luck to you! Deep breaths.

VickiZ · September 1

About 10 years ago my mom was showing signs of not being able to handle her finances. From that point, I started paying attention to her bill paying, eventually little by little taking over her grocery shopping, making her doctor appointments, monitoring her meds etc. etc. etc. She's 97 now and although it's been obvious she was having more and more memory issues. Over these last 10 years she's taken the one page cognitive test multiple times, she's had her driver's license revoked due to memory issues. Never once has any doctor talked to us about her dementia, ordered more tests, offered advice or even comfort for that matter. We just assumed that there was nothing to be done. She was pretty old after all and really not showing any other symptoms of dementia other than memory loss and eventually problems planning etc. She's also a great bluffer when talking to doctors.

Last winter due to a small medical need she had, I ended up doing some research into home health care and insurance benefits etc. I found out that for some resources and services, you need a diagnosis of dementia or you can't get that service paid by insurance or medicare. Anyway, I decided I should back track through doctor notes from way back to see if maybe she was diagnosed and we didn't know it, I read everything I could get my hands on, and lo and behold on one office visit in 2013, the doctor put in his online notes that she has Vascular Dementia. He didn't talk to us about it at the time at all, he didn't do any tests other than the one page cognitive test which was new to us both at the time. Since that time "vascular dementia" has never shown up on any doctor notes, none of her doctors has said "hey, let's get you to a neuro exam", or "how are you guys handling this?" not even a "do you need any resources?". It's just baffling to me.

A couple of weeks ago my mom moved to independent living and her sister passed away the same day as the move. This all sent my mom into a tail spin and we needed to get her some mental help. We went to her PCP office but saw a new PA who prescribed an anxiety medication which has been a life saver. The PA asked when she last saw her neurologist said and was shocked that she doesn't have one. So now we're going for an evaluation which I'm thinking will help down the road when we need Assisted living, home health care or memory care down the road. It will be interesting what the neuro says or if we get any more information.

I know this is long winded but the best advice I ever got was 10 years ago when I first went with my mom to the doctor appointment and my mom's cardiologist looked me in the eye and said, "I want you to be with your mom at every doctor appointment from here on out". I have been and now I'm so thankful that I can be her medical historian when we talk to these lame doctors. My mom has always hated going to the doctor but once she knew I was taking her and many times taking time off work to do so, and I left no room for complaints from her, things have gone ok. I used to just call her and say, put this on your calendar, give her the appointment date and then if she started to complain I'd tell her that we had to go or her prescriptions would run out.

M1 · September 1

Hi Vicki. Wow, 97. It's a,shame that you need documentation. I would think twice about putting her through anything at 97. I wouldn't do imaging, i wouldn't do anything but maybe a cognitive assessment, which anyone can do - you don't need a neurologist for that.

Will a distinct dementia diagnosis make a difference?

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