Early On Set Alzheimer's Diagnosis

Welcome. I think probably most here have not been given a stage based on the 7 stage model. Doctors tend to use the 3 stage model. I will attach the dbat. I think you will have a better idea of stage than a doctor, since you see your more. She would be considered in the last stage she has symptoms. She will not necessarily have all the symptoms for each stage. I don’t know about treatment for early onset, but I know for my mom with vascular dementia there is nothing, so I’m not surprised. It sounds like what you really need is a doctor to help with medication for the symptoms. Some here have found their pcp helpful and others a neurologist. The right medication can make a big difference. How you interact with her may also make a difference. We have a saying her never try to reason with a person with dementia, it will only lead to an argument (and you will lose the argument). I go to crazy extremes to avoid any topic that is going to upset mom. I never ever mention dementia or her symptoms. I avoid including her in discussions and decisions that she is not able to understand (move to a facility, finances…). It’s like walking on egg shells. Bottom line unless it’s a safety thing, she is just always right. It’s hard!

@mawmawof11

I am so sorry for what your family is experiencing. EO is especially difficult.

It's not clear what sort of support— specifically— you are seeking. How does "working for the RR" factor into this for your family?

IME, most of the memory clinics and centers aren't able to offer much beyond a diagnosis because there just isn't much they can offer. There are the newer infusion medications, but it sounds as though your DD would not be a candidate for them. A geriatric psychiatrist would be the best option for medication to help calm your DD's agitation. If you can't access one, her neurologist should be able to order something. If she were to become seriously agitated to the point of being a risk to herself or others, she could be transported to the ER for transfer to a geri/psych unit for medication management.

If you're curious about what lies ahead, a book like The 36 Hour Day would be a good option. It not only explains progression through the disease but also the strategies used to manage the situation. Teepa Snow and Dementia Careblazers have YouTube channels that are also very helpful.

And finally, there is a website offering support and information specifically for EO families. It's mostly targeted at young adult children of PWD but you all may find useful information there.

HB

@mawmawof11

My spouse is a railroad retiree who was on railroad disability ( he doesn’t have dementia). The railroad does have their own pension and an equivalent to social security ( it’s called tier 1 and tier 2). Their system is older than social security. They do have Medicare - it’s just like normal Medicare with a different series of ID numbers and a different address for claims. I am not aware of a railroad Medicaid, but that doesn’t mean there isn’t one. I’m not aware is a railroad spouse being on disability either, but that doesn’t mean there isn’t one.

Retired spouses of retired or disabled railroad workers are entitled to a monthly amount that is a percentage of the railroad retirees tier 1 and 2 under certain criteria ( and it’s in addition to the worker’s retirement). They are also eligible for railroad Medicare just like their retired wirker spouse

I don’t know the rules for disabled spouses of active employees.

As an active railroad employee, her husband should consult with his railroad employer, his union if he is in one, and the railroad retirement board. Larger towns and cities have railroad retirement board offices where you can meet with actual people to discuss this stuff. RRB.gov is the website. It’s pretty detailed.