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

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.

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?

Thanks for your response. I agree with your thoughts about living with confusion and not wanting to drag it out. My husband and I talked about that quite a bit when MCI first started showing itself. He doesn't want it to prolong the suffering and initially refused the Donepezil for that reason. I encouraged him to try it, though and he agreed. About the idea of antidepressants, my husband has many many other ailments, including major depressive disorder, so he's already on various (ineffective) antidepressants. I can't get him to exercise, but at least he's eating healthier than he had been. The family is all out of state. Best life? I know that's what I should aspire towards for both of us. I'm failing. But, I'm still trying. Again, thanks for your honest reply.

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?

Give yourself a barrel of grace. You can take a horse to water, but you can't make him drink. Would moving closer to family be an option? Try to do things that make you happy, so he can get a booster by osmosis. I can only offer walks, swimming, art classes which he turns down.
My goal is to keep him clean, safe and fed. If I can accomplish that, I've done something. Anything else is gravy. He was an architect and preferred doing projects rather than interacting with people. He built our young daughters a playhouse that was shown in Sunset magazine. They loved it, but I wonder if the girls might have preferred a game of catch or reading a book together instead. I still get advice about keeping him stimulated and engaged. I can assure friends that put into a group environment, he would be detached and very unhappy to be there. It didn't work before ALZ and it won't work now. ALZ patients are not the same; they bring their lifelong habits and lifestyles with them. Do all you can do, but all you can do is enough. Put "should" in your pocket and just look for tiny wins in a day. I have an active social life online with friends all over the country; at 80, I even have a pen pal I've never met. Not the same as lunching with friends, but I feel in contact with the outside world by chatting about other ideas besides ALZ. It can be all consuming. Keep your head up and keep treading water.

Thanks for your response. I agree with your thoughts about living with confusion and not wanting to drag it out. My husband and I talked about that quite a bit when MCI first started showing itself. He doesn't want it to prolong the suffering and initially refused the Donepezil for that reason. I encouraged him to try it, though and he agreed. About the idea of antidepressants, my husband has many many other ailments, including major depressive disorder, so he's already on various (ineffective) antidepressants. I can't get him to exercise, but at least he's eating healthier than he had been. The family is all out of state. Best life? I know that's what I should aspire towards for both of us. I'm failing. But, I'm still trying. Again, thanks for your honest reply.

My husbands PCP is also a close friend. I think he was in denial until I told him I wanted my SO to see a neuropsychologist. His friend then referred us to a geriatrician who specializes in dementia. That is where we got the diagnosis of MCI in March 2023. We then saw two neuropsychologists for months after. Never saw a neurologist. No medications just a ton of supplements all prescribed by the neuropsychologist.
Along with continued exercise, a Mediterranean Diet that includes meat, socialization, and brain games. We do it all.
When I asked the geriatrician whether he needed to start Aricept or other meds he said- no. Continue whatever you are doing. He knows little about any of the supplements but felt good about what we are doing to keep things from progressing too fast.
Every individual with cognitive impairment has a different brain and body and needs a good doctor to SEE THEM. Some may need helpful meds, but for others meds may not be helpful.
Balanced exercise is the best medicine that all his docs agree on. My husband goes to the gym and walks. But all that may be prolonging life in his body. We need the brain to keep up.
This disease that causes confusion to the patient also is confusing to caregivers and doctors.
In the end all we can do is enjoy the moment.

Give yourself a barrel of grace. You can take a horse to water, but you can't make him drink. Would moving closer to family be an option? Try to do things that make you happy, so he can get a booster by osmosis. I can only offer walks, swimming, art classes which he turns down.
My goal is to keep him clean, safe and fed. If I can accomplish that, I've done something. Anything else is gravy. He was an architect and preferred doing projects rather than interacting with people. He built our young daughters a playhouse that was shown in Sunset magazine. They loved it, but I wonder if the girls might have preferred a game of catch or reading a book together instead. I still get advice about keeping him stimulated and engaged. I can assure friends that put into a group environment, he would be detached and very unhappy to be there. It didn't work before ALZ and it won't work now. ALZ patients are not the same; they bring their lifelong habits and lifestyles with them. Do all you can do, but all you can do is enough. Put "should" in your pocket and just look for tiny wins in a day. I have an active social life online with friends all over the country; at 80, I even have a pen pal I've never met. Not the same as lunching with friends, but I feel in contact with the outside world by chatting about other ideas besides ALZ. It can be all consuming. Keep your head up and keep treading water.

Thank You for your advice and words of wisdom. He used to go to the gym on a regular basis but has stopped going. We were also taking walks on a nightly basis, but we stopped after I had reconstruction surgery to my nose after MOHS for SSC. The surgery has had complications so I am not myself lately, but hopefully will start again soon!
I am trying to find a neuropsychologist in Massachusetts without having to travel to Boston. Wish me luck!

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?