Treatment Options and Initial Questions

redjettadi

My sister was diagnosed today and she is 66. She is already on Donepezil 5mg. I see discussion around infusions. Can someone enlighten me on this? Also wondering what some good initial questions are to ask the doctor when we have our first in person visit.

H1235

Welcome. I would ask if it’s safe for her to live alone and drive. Some doctors tend to let family flounder with this and stay out of it, but if you are lucky you might get an honest opinion. Keep in mind that even if these things are safe now they probably won’t be for too much longer. These are tough hurdles and if it comes from a doctor she might take it better. It will also allow her to blame the doctor vs family. Family is forced to take enough independence away. I have attached a staging tool that most of us on this site use. Doctors use a three stages and it’s really not very helpful. If she hasn’t appointed a DPOA, medical poa, will, living will, now is the time. This was recommended by the neurologist the first visit (so thankful for that). I can’t speak to infusions. You can search the discussion board for old threads on this topic. I would imagine there are a few.

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

understanding-the-dementia-experience.pdf

harshedbuzz

https://alzconnected.org/discussion/75156/treatment-options-and-initial-questions

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

You say your sister was diagnosed, but not the specific diagnosis. The infusions are only indicated for those with Alzheimer's confirmed most often by a special PET scan or spinal tap. Additionally, if this confirmation is obtained, additional genetic testing is done to look at the number of copies of APOE 4 she carries as having a pair makes the infusion treatment riskier.

You might want to do some research yourself ahead of the appointment to understand the risks, costs, logistics of administration and limitations of the actual treatment. Some studies suggest they aren't as effective for women, the elderly, and POC as they are for younger white men.

HB

Michele P

https://alzconnected.org/discussion/75156/treatment-options-and-initial-questions

I posted a link on this site for a discussion on YouTube with a neurologist who discussed the two current infusion drugs. Excellent source of information. It will answer your questions.
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