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MWebster

Hi, I thought I sent a message but I don't know how to see it. After I post this will I be able to easily see the responses? My sister was diagnosed with Alzheimer's/Dementia last June after a PET scan. We finally have the follow-up appointment with her doctor Nov 7th. How does the doctor determine what stage/level my sister is at? What questions should I be asking? My sister is only 63…..

M1

welcome to the forum. If you look to the right under Quick Links and Groups, there is one for new members that includes a lot of useful information including commonly used staging tools. Honestly your assessment of her stage by behavior is likely to be more accurate than anything the neurologist can do.

The most important thing you can do early on is make sure that legal and financial issues have been addressed regarding her long term care needs. Someone needs to hold durable power of attorney for healthcare and finances, and a determination made regarding whether she could afford to pay for private memory care in the future or whether she will need to qualify for Medicaid. A certified elder law attorney can help with these issues.

SusanB-dil

Hi MWebster - welcome to 'here', but sorry for the reason.

M1 is correct - check out the links to the right, and make sure DPOA and HIPAA accesses are in place.

Sorry you are dealing with 'this'.

H1235

Welcome! Is she still driving? Do you have concerns about her driving? What does the doctor think? Does she live alone? Does the doctor think she is safe to continue to live alone? These are big issues and sometimes a LO might take this news better from a doctor rather than family. You may even be wondering yourself and a professional opinion is helpful. We were kind of shocked when the doctor told us mom was no longer safe to live alone. Is she safe to be home alone while her caregiver is at work? If you are thinking she will need to go to a facility ask what level of care is recommended. I never had a doctor give me a stage. This is a very helpful staging tool. https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf
One of the first things the neurologist told us when she was diagnosed was to see a lawyer now. We did POA medical, DPOA and A living will. If you don’t have hipaa rights I would take care of that while at the appointment. Bringing some of this up in front of her may cause anger and outrage. A note to the doctor may work better. I have access to moms online healthcare portal and used that to give the doctor my questions. I hope this helps.

SDianeL

ditto what others listed. Also read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Tam Cummings has helpful videos online. As others have posted, get the legal papers done now. Don’t wait. In 6 months my husband could no longer read & understand documents or sign his name. So sorry about your sister’s diagnosis. You should find your original post and the replies will be with it.

harshedbuzz

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

You've gotten some great replies already, but I wanted to speak to your follow up appointment. I've found it common for doctors to stage dementia more from a clinical/treatment model— more about what they can offer. This is broken down into early stage, moderate and severe. A person with mild or early stage might be a candidate for Leqembi infusions or one of the oral medication which can improve function in some individuals. In the late or severe stages, certain medications for dementia might be stopped. Many caregivers/doctors take a more palliative approach to medical care; sometimes preventative medications and routine screenings are stopped.

Caregivers almost always use a the 7-step model for staging that aligns more with the PWD's needs for assistance and supervision. IMO, a family member who lives with or sees their LO often have a better sense of stage than a physician who is seeing them for 30 minutes at the PWD's best time of day especially if the PWD showtimes.

Showtiming is when a PWD can temporarily hold it together enough for a short time to appear less impaired than they are. Medical appointments and visits from friends and or family are the classic situations in which a PWD will do this. This results in others getting a false sense of what's going on and can make a caregiver look like an unreliable reporter.

I found the DBAT linked in H1235's post more helpful than dad's neurologist's Mild/moderate/severe in terms caregiving. While I wouldn't want to infantilize a PWD, the age equivalencies were very useful for keeping a PWD safe. My mom was a bit in denial about dad's level of impairment and tended to focus more on maintaining the illusion of his independence (around things like driving and being home alone). I found DBAT useful for framing discussions with her— would you give an 8-year-old your ATM card and car keys?

There's the FAST scale, which is also helpful around caregiving. It is similar to the DBAT, but further breaks down stages 6 and 7 into 10 sub-stages. I found this useful for anticipating next skills lost even though my dad's progression was somewhat different in terms of order. For instance, when you see your LO toileting hygiene slip, it's best to make sure you have a 6-sided mattress protector and incontinence products on hand.

FAST-Scale-digital.pdf

HB

ETA: Your sister's doctor may also use the term "Early Onset" (EO) to describe your sister's dementia because of her young age at diagnosis.