New Diagnosis but no stage given

utahandersons · October 3

Hi everyone. I'm new here. My mom was recently diagnosed with Alzheimer's Disease. She just turned 78. She had the bloodwork (she is APOE E4/E4), the PET scan— Centiloid Value: 57.70, and other things like cognitive testing, MRI, etc. However, with all of these they did not tell us a STAGE of Alzheimers. Everything just says Moderate— but she seems to be declining pretty fast. Is there a way to figure out what stage she could be in? Both her mother and brother died of Alzheimers as well.

In addition…regular senior centers seem to mostly offer things for seniors without memory struggles. Are there any resources for those with memory deficiencies?

Thanks so much!

Damiross · October 3

Memory care (or center) are for those with dementia.
From AARP:

"Memory care is a form of residential long-term care that provides intensive, specialized care for people with memory issues. Older adults with Alzheimer’s disease or dementia can benefit from the structured support and specialized 24-hour care offered by a residential memory care facility."

https://www.aarp.org/caregiving/basics/memory-care-alzheimers-dementia/

I am probably in the minority but I think labeling a person with a stage of dementia doesn't do any good. Each person with dementia is different. Keep on a eye on your loved one with dementia. You, as caretaker and someone who knows your mom better than any doctor ever will, can determine how much dementia she has.

My wife developed dementia. The first doctor she went to refused to say out loud that she had it. She changed medical groups and was finally diagnosed with dementia. They did want to test her to see what type of dementia. I said "no" to that for a couple of reasons.

I didn't want her having to answer questions that obviously confused her and made her feel bad
There is no cure for dementia. I don't care what it is labelled. All I know is that my wife is no longer the person she was.

I am lucky. The memory care that my wife in is only 5 minutes from where we live. They have excellent caretakers and activity leaders.

If your mom can no longer do the activities of daily life and/or has become violent, you need to be her advocate and insist her doctor do all they can to get her into a memory center. Part of the cost may be paid by Medicaid (called Medi-Cal in California; your state may call it something else).

harshedbuzz · October 3

@utahandersons

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

IME, physicians tend to stage dementia using a 3-stage model based on the treatment options appropriate to the stage. Families and caregivers rely on a 7-stage model that is aligned with skills and safety issues. DBAT is one 7-stage model. Between the two camps, it's generally family and daily caregivers who have a better sense of where the person is in terms of progression.

DBAT (1).pdf

There aren't a lot of resources for elders with dementia in the community and what there is costs money. The doctor or memory center where she was seen might have a social worker that is aware of what might be available in your community. Your county Area Agency on Aging would also know what is available locally. I also found an IRL support group valuable for the inside information on things like home health agencies, memory care facilities and such.

HB

H1235 · October 3

Welcome. I’m glade you found us, but sorry you need to be here. The DEBAT above is a great resource. Because you are new here I also want to mention the importance of getting legal matters in order. It is incredibly important to see a lawyer while she is still able to legally sign documents. Someone will need a DPOA. Is she living alone? In my experience the time from diagnosis to needing 24/7 care is almost zero. If a facility is likely her next move, you should know there can be a waiting list to get in. There is so much to do and learn in the beginning.

dancsfo · October 5

I agree that it's better to look at the bigger picture. A stage may not be very useful, unless some provider specifically requests it, but they may end up wanting to perform their own assessment if they want to determine the appropriate facility or service. I do agree with trying to learn as much as you can early on. It's too risky to learn as you go. One accident or epsiode can be have serious consequences for your mom and other people too. This forum has much info, as does your doctor and social & community resources for elders with dementia. I'd recommend to try all that you have access to.

amandakoppelmsc · October 5

https://alzconnected.org/discussion/77271/new-diagnosis-but-no-stage-given

Welcome, and I'm sorry you're dealing with this, especially with the family history on top of it

"Moderate" is a stage. Doctors often just use mild, moderate or severe. For more detail, look up the FAST scale (7 stages based on daily function), or ask her neurologist for her CDR or MMSE/MoCA scores. The PET and APOE results confirm the diagnosis but don't show the stage.

If the decline seems fast, tell her doctor. Infections (especially UTIs), medication changes, dehydration, poor sleep or depression can all make things worse and are treatable.

For activities, search for "adult day programs" or "memory care day programs" instead of senior centers. Memory cafés are good too. In the US, the Alzheimer's Association helpline (800-272-3900) or your local Area Agency on Aging can tell you what's nearby.

Maru · October 6

I like the 7 stage simply because it gives me an idea of what to expect next and to be prepared. For example: is it time to get locks on the doors or at least an alarm system that lets you know if your loved one is going out (will they wander off?), is it time to put locks on the stove top, the microwave, do you need to make sure you have what you need to assist them in bathing/showering, are you prepared for bedwetting and diapering and so on.

New Diagnosis but no stage given

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