resources until "official" diagnosis of Dementia

Clystina · May 2

What are some resources we can access until we get the official diagnosis. My mom seems to be progressing SUPER FAST, in the matter of months she seems to have moved from stage 1 to stage 5 or 6. We have the MRI and doc appt scheduled in a cpl weeks but she is becoming a threat to herself and others in the mean time.

Bowerbird · May 2

Since you do not have an official diagnosis yet, as there are several types of dementia, which progress in different ways, I would suggest that you speak with an elder law attorney and get POA over her, so that you can make financial and medical decisions for her. There are many books and videos out there with relevant and useful information (and stick with the forums here too.) My recommendations are The 36 Hour Day, a guide book that is extremely useful in learning about the various dementias and what caregivers can expect from this grueling journey. There are numerous videos on YouTube by Teepa Snow, Tam Cummings and Teresa Youngstrom, among many others. Educating yourself and your loved ones ahead of time will give you some preparation as to what to expect.

harshedbuzz · May 2

@Clystina

I agree with the previous poster, now is the time to get the legal paperwork done in order to be able to act on her behalf as a decision maker.

TBH, unless you need a physician to declare her incapacitated to activate a springing POA, start an infusion medication specific to early-stage Alzheimer's or apply for SSDI, having a firm diagnosis doesn't bring a whole to the party. Another caveat is that often the doctor will order additional testing before giving a diagnosis at a second appointment in a month or so. Sometimes, you'll be given a "mild cognitive impairment" diagnosis initially because the doctor wants to see how things progress in the next 6-12 months.

That said, if she is a risk to herself or others, even without a diagnosis you would still have the option to have her transported to the ER for transfer to a geripsych unit for medication management.

Good luck.
HB

H1235 · May 2

If she is suffering from anxiety, anger or depression (very common with dementia) her pcp should still be able to prescribe something for her. It can be difficult for the doctor to understand the extent of the issues you are facing in a quick visit. You might try recording an outburst/ situation and showing the doctor. Bringing these things up in front of your mom will probably cause problems. You could also give the doctor a note or use a patient portal. I would say bringing these things up at the visit may give the doctor some insight into what is going on, but if she is anything like my mom she would save it til she got home. I will attach a few links that may be helpful.

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

understanding-the-dementia-experience.pdf

https://www.rightathome.net/nassau-suffolk/blog/therapeutic-fibbing-and-dementia-patients