Absolutely agree with everyone! I remember every time my mom got kicked out of the memory care facility because she was violent? I would walk the hallways crying 3 o’clock in the morning begging these doctors to please admit her and get her safely medicated for her good and for ours, of course. I know I’ve told the story before, but somebody finally listened to me. It was a woman, and they admitted her to the geriatrics psychiatric ward. She was in there for 59 days, paid 100% by Medicare for the first 60 days, and she left a lot calmer. I don’t understand what’s up with doctors in general and I don’t mean to be offensive. However, more needs to be done. It needs to be done sooner. We need more facilities. There are not enough geriatric psych beds in the hospitals - they kept my mother for over a week to two weeks in a containment room in the emergency room. I’ll reiterate? She was safe and well cared for but we had to wait. Almost 2 weeks to get her the care she needed medicinally to help her. The other thing is, I’m reading about SPECT scans by Dr. Daniel Amen and I asked if Charlotte North Carolina did them and they don’t. Why are we not looking at blood flow in the brain if it helps us, as a tool, know what medication to prescribe, to help Patients! Depending on where you have damage, too much blood flow too little blood flow apparently can help determine what medication‘s can help with paranoia or violent behaviors. I’m not a doctor? But for God sake, why are we not investing in this research to help each other? It’s disgusting because everybody wants a piece of the pie financially. Medicare doesn’t want to pay for it. Insurance doesn’t want to pay for it yet. We pay for insurance to supposedly take care of ourselves. It’s ridiculous. I’m off the bandwagon but we could do better as a nation and as people, and we’re not. And when I say we do not this wonderful community. Politicians wealthy people. Corporate heads. That are focused on profits over people. Thank You for allowing me to share!

I can understand all your frustration and feelings that surround the diagnosis and the neurologist’s lack of empathy when dealing with dementia. We started with a neurologist seven years ago and as many of you received the same approved drugs (Aricept and Namenda). The doctor also gave the same information as to neither being any cure but “possibly “ slowing the progression of the disease. I can’t say if this has been true for my husband but he definitely did not have a rapid decline but a slower, steady decline. My husband has been receiving medical care from a Geriatric team for the last five years. They stopped the Aricept because of his heart condition and replaced it with Rivastigmine transdermal patch. They have also helped with meds for his anxiety.
I highly recommend Geriatric doctors as they are experts and can offer treatment options and help the patient and the caregiver plan for the future.

@A myALZteam Member can you indicate what the "newer infusions" are? lecanemab (Leqembi)? You're spot on with the many problems with it.

Otherwise, I notice this Question comes from the site mangement. THE ANSWER is, therefore, YES WE ALL ARE FRUSTRATED, with no exceptions. I have extensively posted about the scientific difficulties to be overcome, there is not even a consensus about what actually and precisely causes Alzheimer's, and an immense amount of groundwork needs to be done to clarify SO many basic questions about normal clean up of misfolded proteins, the influence of normal aging, the role of lipids in building and maintaining the cell membrane, the 300 or so genes and their variants that are implicated in the disease, in short how does a healthy neuron work, and what makes it work differently, and to what extent are dopamine or other neurotransmitters the problem, and are there lifestyle issues, and what is the role of copper, or how do amyloid 42 fragments influence alpha synuclein, etc, etc, etc. We need science education, excellent universities, multi disciplinary team spirit, much more government involvement in selection and support of research, focussed education of parliamentary representatives in the G7 countries (most politicians not having a clue about science).

Mentioned Users

A myALZte...

OF COURSE WE ARE ALL FRUSTRATED!
How can we not be, when there are absolutely NO curative treatments?!

According to the Alzheimer's Association, in 2024, an estimated 6.9 million Americans aged 65 and older are living with Alzheimer's; and according to the World Health Organization, 55 million people worldwide.
https://www.alz.org/media/Documents/Facts-And-F...

It's one of the MOST costly diseases for individuals, families, and the government, so it's glaringly obvious that MUCH more research should have been done over the years -- but that was never prioritized. What about a "Dementia Moonshot", like the "Cancer Moonshot"? Because resources were allocated to research, today many cancers can be cured, or lived with; it's both sad and highly frustrating that we can't say the same for Alzheimer's and the other forms of Dementia.

I agree MarkLowery. I think MD's are as confounded by "Dementia", ALZ in terms of treatment and medications are a huge part of the medical model. I'm grateful the aricept and namenda may be buying us a little more time at somewhat better levels of cognitive functioning. But no way to measure. Now there's more focus on life style changes, diet, exercise, socialization, and cognitive "exercises". And even the diagnostic approach is lacking..."Undifferentiated Dementia", "probably ALZ". Little more if signs of Lewey Body or Vascular. I think that's why the ALZ Association and groups like this online are invaluable. Being old does marginalize us in the health care industry. Luckily there are empathetic and knowledgeable health care providers once you find them. It's a hard road that takes lots of assertiveness, determination and doing your own research for resources as a caregiver to get the best care possible at this point for your LO. You've done a great job at all of that. I hope the overall aging of the population, increasing number of people with ALZ and the push/funding to do research will make it better for others facing this in the future. Sending support. Take care.