Looking for support group/literature for my 18 & 22 year old kids

Since they are adult share the literature you have Maybe your clinic might have some suggestions too.

Dear Scott, I am on this same path with you. I am caring for my dear husband, who has early onset dementia. We have a 21 year old daughter. We recently connected with Lorenzo’s House , where there are more amazing people, with special attention to young adults. All the best to you and your family.

If your wife hasn’t had “official” neuropsych testing, I highly recommend asking her PCP for a referral to a local practice. My husband was diagnosed with vascular dementia last year, sent for the testing, and the psychologist, who did the testing, invited me to return by myself to go over the results.
At our meeting, he went over each section of the test, explained what that section looked at, and showed me my husband’s answers/work/drawings. As we went through each section, he answered any questions and at the end, looked me in the eyes and answered my questions as to what all this means and what things might look like in the future. He also offered me the opportunity to for me to return for counseling at any time.
This was SO HELPFUL. I had read books and articles, but to have actual data in front of me and to be walked through what it all meant by a trained psychologist, who knows how to help people with bad news. If you do this, your daughter and you could be together in the office, your Hawaii daughter could tune in on Zoom. They would hear and see everything and be able to ask as many questions as they (and you) want.
Another avenue is- if your wife has been given the diagnosis of progressive aphasia, there is probably a licensed Speech Pathologist in there somewhere. You could make an appointment to speak with that person and talk about what the diagnosis means and what lies ahead, Zoom too.

@scott5280 You have certainly found yourself in a difficult situation. Other members have given you some excellent suggestions. I hope you can try some of them. I found this website that you may want to look at:
https://lingraphica.com/virtual-connections-info/
It has lots of information, plus online daily support groups. It may be worth looking into.
You may also want to find a university medical center or comprehensive medical center. Their speech language pathology departments may have some good advice or programs .
Please let me know what you are able to find out.

First, I would suggest you get a consultation/second opinion with another professional-just to make sure the diagnosis is correct. I am a speech language pathologist-retired now. I have seen people with dx and second opinions revealed a different result. My good friend’s husband was dx with dementia and she began to interact with him based on that. She wouldn’t let him drive, etc. Turns out he was severely depressed. Not trying to give you false hope, but I would want to be sure.
I suggest the next step is counseling for you and your children. They (and you) may be grieving and need to work through that before they are ready to explore how to interact. The dementia will still be there when they are ready to learn more.
In my years of working with families of people that were younger the refrain that was repeated over and over was, “It’s not fair, it just isn’t fair.”
Of course it is not fair. It is never fair. It wouldn’t be fair if she had a brain tumor, or got a traumatic brain injury from a car accident. Most people get to grieve after their loved one passes. But with dementia you grieve while they are still living.
You sound like a wonderful caring husband and father. What you are facing is very very hard, but not impossible.

@jprust Such a wonderful, helpful answer! Thank you

Thank you for this information. We are set up in the UC Anschutz Health System and my wife is currently enrolled in a couple studies. We are just getting started with all of this and figuring out what services are offered and how to sign up. Everyone has been super helpful. Trying to find my footing.

@scott5280, I wanted to check in and hear how you, your wife and your daughters are doing. Any updates?