Early Stages: assessment, support, education

ellenmw

Hello,
I am in the early stages of needing to get my LO a neurological assessment and get educated as their child on the best ways to support them moving forward.
It's hard to know if they are in early stages or if aging and isolation and depression are the culprits. (want to acknowledge that i know they will exacerbate any early onset symptoms as well.)
Looking for any resources for process in early intervention, assessment, transitioning to assisted living, etc.
thank you!

Emily 123

Hi Ellen,

Others will chime in with very practical advice. My mom had visited an elder law attorney in her 70's, and so we were blessed to have the legal structure to act when we needed to. It's not unusual with dementia to have a 'wheels fall off the bus' introduction to the disease. I felt like I was able to better manage my interactions with my mom once I better understood how the changes she was experiencing made her think. This forum was a Godsend, as well.

I've found these helpful:

Understanding the Dementia Experience: 

https://www.smashwords.com/books/view/210580

Tam Cummings assessment tools/AD checklist

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

Tam Cummings-Stages: https://www.youtube.com/watch?v=tansVVDM0fE

Teepa-10 early: https://www.youtube.com/watch?v=pqmqC-702Yg

Teepa-multiple videos: https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

5 losses: https://www.youtube.com/watch?v=awBm4S9NwJ0

Stage 4: https://www.youtube.com/watch?v=coiZbpyvTNg

Stage 3: https://www.youtube.com/watch?v=TIkTO4d8YyI

Moderate stage changes: https://www.youtube.com/watch?v=6cZTgG6kDjs

Anosognosia https://www.youtube.com/watch?v=5nw3YUDQJuY

Careblazers-How To Convince Someone With Dementia They Need Help: https://www.youtube.com/watch?v=ncKhXQtnyfI

Careblazers-5 mistakes to avoid: https://www.youtube.com/watch?v=rO50pVUOlbE

Dementia/Driving: https://www.youtube.com/watch?v=B3x5nQ7oB98

Stepping Into Dementia’s Reality: Advice From Teepa Snow | Brain Talks | Being Patient:  https://www.youtube.com/watch?v=EOCZInnLQd0

End of Life Issues: https://www.youtube.com/watch?v=a1RvE8fP0yo

Teepa Bathing tips:  https://www.youtube.com/watch?v=iKT9YIVPREE

Vicky Bathing Tips: https://www.youtube.com/watch?v=iu-O2KtgMWY

OT discusses changes: https://www.youtube.com/watch?v=zkKi9_-tYbQ

MC or Nsg home: https://www.youtube.com/watch?v=Cetf0Q566Hc

Adv dir. https://www.youtube.com/watch?v=ii73c8k63Ag

H1235

I have found this website very helpful. It’s not just about staging but seeing what to expect next.https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

A suggestion you will see often here is see an elder law attorney soon and get all legal matters squared away. Another suggestion is to just learn all you can about dementia. The better you understand dementia the better you will be able to care for and make decisions for your lo. When you do see the neurologist have questions ready. What stage? Should lo be driving? Is it safe for lo to live alone? ….. I found my lo responded better to the doctors recommendations than me and my sibling making the same suggestion.

I feel like memory loss is the symptom everyone looks for. My lo has vascular dementia and the symptoms we saw first were lack of reasoning skills( she wanted to paint the garage at 70). Even now her memory is not that bad. So know it’s about a lot more than memory. Depression is a symptom.

Something I wish I had known more about in the beginning was anosognosia. It means you lo doesn’t see the trouble they are having and no amount of explanation will make them understand.

This is a tough road you are headed down. I wish you the best. Take advantage of these discussions, there is a lot of great people out there who have been through it all.

harshedbuzz

@ellenmw

Hi and welcome. Sorry you find yourself here, but glad you found this place. You've already gotten some excellent advice. A lot of it.

Yes, you should consider seeing a CELA to make sure you have the legal paperwork in order. Even if you do have a POA, you'll want to make sure you know what it covers and if there are constraints to exercising it. One wife on the spouse board is having trouble getting two signatures from doctors to activate her husbands. You also want to look at finances-- does LO have a LTC policy or funds to pay for a facility or in home care. FWIW, memory care is typically $5-10K these days and in-home aides 24/7 are typically even more. If LO can't, then you'll want information on Medicaid and Medicaid planning.

Of the resources @Emily 123 posted, I'd prioritize the Tam Cummings handout (both folks posted that one), the Smashwords "Understanding the Dementia Experience" (it explains how dementia impacts the person with it cognitively, emotionally and behaviorally) and the video on anosognosia to start.

You can begin the diagnostic process at a PCP who can order imagining (to rule out a tumor or other cause), bloodwork to rule out conditions that can mimic dementia but that can be treated and a quick in-office screening for cognition/memory loss before referring to a neurologist, memory center or geriatrician. You'll want to go into the first appointment with a list of concerns-- I would write a bulleted list and communicate via a patient portal or by handing the person who checks you in discretely saying "please have the doctor look at this first".

Some PWD can "showtime" which is to say they can seem more with it than their baseline for short periods around a visiting relative or doctor. If you live locally but not together, you could be that relative. My friend's mom lived right around the corner and they spent several hours daily doing things together but friend was shocked at how impaired mom was when she moved her in with her. This was confirmed by signs at mom's house when she readied it to sell-- burned towels and pans, out-of-date foods, dirty clothing in drawers and cupboards, etc. What helped her really see her mom's function clearly was mom living with her 24/7-- I would encourage you to make an excuse to stay with LO for a couple of days to get the best sense possible ahead of reporting symptoms to the doctors.

Be aware that many times a family member will bring a LO in to start the evaluation process and come home with a MCI diagnosis. Long term PCPs who may have a warm relationship with the PWD may not be comfortable giving such a bleak and terminal diagnosis. Sometimes neurologists will also give a preliminary MCI diagnosis at the first appointment taking a conservative wait and see approach until follow up in 6-12 months.

There are some new medication options for people in early stages. TBH, I am not dazzled by what doctors I know are saying about them (2 docs dad saw are often quoted in articles relating to them) in the context of how expensive and inconvenient they are to use. FWIW, reports suggest these meds aren't especially effective for women in particular. There are older meds which can improve day to day function for some for a time but they do nothing to actually slow the damage to the brain. That said, if your LO is truly depressed, whether they have dementia or not, that should be treated medically. Dad was already on an SSRI for depression when he was diagnosed. He saw a geriatric psychiatrist who increased that dose and added low doses of 2 other medications to address dad's moods.

HB