Caregivers: Early Onset Alzheimer's, diagnosis age 19 to 65

@gail60 I had to look that one up! I had never heard of it before. Where did you hear of it?
I’m sure some of the members have heard of it and will tell you. Who do you want to get the diagnosis for?

For my spouse. He has been dx with EOAD but has findings for Vascular as well. There is a high incidence of oerlap between EOAD and Lewy Body Dementia and while his symptoms do not present as LBD, it would be a comfort to rule that out for the future.

Hi, I am looking for information relative the diagnosis of early onset Dementia. My SO definitely has the beginning of Dementia, but when we went to Neurologist he was asked to remember a set of words. He did remember the words so therefore the neurologist said he was okay! He also has been falling and his driving is getting bad! I will not drive on highway with him any longer! I am hoping for insight on where to turn? He knows his memory and driving are suffering but did not admit to it while at Neurology appointment. I Spoke to him and said I believe there are medications to help and seems to be receptive to taking some tests. Where do I begin?

@pamwill1960 Wow, that must have been an unhappy moment for you. If the neurologist dismissed him after a cursory look, I would head back to his primary provider, and with his permission, bring a list of the incidents and observations that are concerning each of you. And keep lovingly reminding him that being macho and not admitting what is happening is not helping him stay healthy for the two of you.

There can be explanations other than dementia for both falls and memory issues - some as simple as very high or low blood sugar, dehydration, hearing loss, an untreated infection (especially UTI's which can be asymptomatic in men) or pneumonia, and other ailments that are more serious but still manageable.

In my husband's case, the problems were not wearing his hearing aids, overmedication (conflicts between meds he takes for several conditions), bad reactions to one med, and a UTI. Once all was in balance, he is much better. And I am now cued in to subtle changes that mean he needs food or water and so is he. And I am much more insistent when I think he needs medical care.

Is there a geriatric practice near you? They are much more holistic in their care, I think. My husband's geriatrician schedules 45 minutes per visit. He is given the standard test(s), usually the Montreal cognitive assessment test (MOCA) and some neurological tests (reflexes, etc). The geriatrician then chats with him ( after chatting with me separately for about 10 minutes. ) This is every 6 months! He also sees a neurologist, but only once a year. I hope you can find a geriatrician easily. They will be the specialist you need.

My husband had been seeing the same neurologist for years for treatment of essential tremors when dementia symptoms began appearing. Eventually, we got an appointment with a neuropsychologist. I don't know if that helped, but at least we have a diagnosis of mild cognitive impairment. The neurologist put him on meds that are not helping in the least. The positive side is that I can see what our future is likely to be and I can try to be grateful for our present. I don't successsed in the grateful department very often.

Hi, Can you explain I'd it was the neuropsycholigist that made the diagnosis of MCI and what tests were used by the Dr. I have never heard of a neuropsychologist but I will look to see if there are any in our area. You mentioned the medications were not helping, can you provide me with the names of the medications?
Are there different medications that they can try for your husband? You are definitely right in being grateful for the present, who knows what the future will hold! Even without a diagnosis I have an idea of the future and I definitely am not looking forward to any of it. My Grandmother, my Father and his mother all had Alzheimers and we saw the devastating disease first hand.
I will pray that your husband does not develop any of the symptoms of the disease that will cause him to completely forget🙏🙏

It was the neuropsychologist who made the MCI diagnosis. My husband had been seeing a neurologist for many years to treat a tremor. As time went by, I noticed cognitive changes and accompanied him to one of the neurologist appointments to address the problem. That doctor ordered an MRI and several other tests, but I'm afraid I don't recall what they were. He didn't find any pathologies, so time passes. Years go by and my husband's symptoms become more pronounced. I again accompanied my husband to the neurologist and pressed my case. He suggested a neuropsychologist. We had to wait an inordinately long time (maybe 6 or 8 months) for that appointment. The neuropsychologist spent several hours talking to my husband and administering written and verbal tests. After that, the neuropsychologist contacted the neurologist and gave him the results...MCI.
Another thing to keep in mind is that not many neuropsychologists accept insurance. We were lucky to find one that did take our insurance, and that probably contributed to our long wait.
The medication that the neurologist prescribed is donepezil. It's not working at all. My husband's memory is still declining.
I hope this information can help you in some way. I hope your future is not the one you fear.

It was confusing to me for years. My mom seemed perfectly cognitive for weeks or even months at a time, then she would have terrible memory issues, then would return back to normal.

Doctors would make informal comments about her memory but wouldn't document any cognitive deficit until very recently.

Donepezil is the first line of defense. The neuro starts a low dose and then ups the ante. It may help or not; it is like throwing darts at a board. Next is an antidepressant, low dose then a higher dose. My husband's GP took him off the donepezil because of possible liver complications; the risk wasn't worth. I think honestly, the RX is to make the spouse feel like they are getting as much help as possible. The truth is, there is no cure. Slow down? Maybe. If you were living in a totally confused state, would you want to drag it on longer? The GP said the best RX was living the best life possible near family and friends; good food, good exercise; and hydration. Just make the best of each
day.