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

Husband was diagnosed 4 years ago at 59 years old. There is a great lack of understanding regarding this particular diagnosis in my area. I have a phenomenal online support group and they strongly encouraged the tertiary evaluation so we did it. When we went to Mayo we found he is too severe for any of the clinicals. We have follow ups with Social work and Counseling/Education. I'm trying to stay connected with people who are on the same journey.

Hi, @gail60 My wife began her war at 48. I was her caregiver until she died 15 years later. Insurance was one of our bigger issues, especially when I became unemployed due to the time demands of caring for her and bosses who were inflexible.

I agree that the lack of understanding is a significant hindrance.

Strength, Courage, & Peace

@laughsloudly @gail60, I'm glad you've connected. I'm wondering what tips or tools your families have found to help with the challenges of young dementia. What challenges have you faced and what adjustments helped to adapt?

I am so sorry to hear you are going through this at such a young age. It sounds like you are doing everything to find the diagnosis and I know this is difficult.
Dementia is a mysterious disease and not all is Alzheimers. It would be helpful for more people to do what you are doing even though it is so hard.

My husband is older-now 77 with MCI but I am wondering if it would do us any good to pursue more diagnostic testing. All he has had is an MRI and meetings with the neuropsychologist and geriatrician. I asked his PCP to order a PET scan. He was no help when I asked about looking at APOE-the PCP ordered a lipoprotein A test instead.

I have thought of further eval at a Mayo Clinic, but at our age what will we accomplish?

Thank you for sharing. I hope you find support here.

Hi Colleen,
I have learned so much and continue to learn every day. Here are my initial thoughts:
Generally, if it is early enough in the disease process, make sure you have all the hard conversations. Finances, Insurance, Legal - Will, POA, Health Care Surrogate, Advance Directives, Care expectations, Funeral planning, who will take the kids & pets if you are both incapacitated. Then discuss the Bucket list stuff. There will be no "Golden Years" - do it now. Record their voice and messages for the kids, especially for milestones like weddings and graduations.
Next, I would downsize and simplify. Say "No" a lot. But also say "Yes" as you are able. I would also let go of any preconcieved notions of who will help, and who will go running in the opposite direction. Expect that people wll say some really, really stupid things. They have no way of knowing what they don't know. And, at this point, I am grateful they have been spared the burden of the knowledge gained on this journey. Find your support and educate yourself about all things having to do with dementia.
Lastly, grant yourself and everyone around you Grace & Space, to feel your feelings; even to be in denial or to have an experience that isn't rooted in reality. One lady said the Improv skill of "Yes, and..." works well. This is a Family Diagnosis, no one comes out unchanged. Ask for what you need.
I say these few things in hopes of helping someone else but there is much more to know.

@gail60 Well said! It makes me think that everyone should have these conversations while they still can.

Having a support system is most important. Friends and family that can help when needed. Most of them don't truly understand how impactful this is to our lives, but they are usually willing to help, so I think it's important to ask for help when I need it.

In addition, Ashley Varner at Emory runs a virtual caregiver support group for those with young onset dementia that I've been to a few times, which is really helpful. It's the third Tuesday of each month at 6:30pm and you can reach out to Ashley.elizabeth.varner@emory.edu for more info.

I've also found a couple of Facebook groups that are helpful: Early-onset/Young Alzheimer's Female Spouses Caregiver Support Group and Spouses of those with Early Onset Alzheimer's Disease.

For kids, there is a great group called Lorenzo's House - https://lorenzoshouse.org/

If anyone has any other resources that have helped you, please let me know!

I'm sorry to hear that your husband is having challenges. It may be worth meeting with a neurologist as well. In terms of age, dementia is more likely the older we get, but there are potential drugs that can help slow the progression if they are able to diagnose a particular type of dementia. Sending you peace and hope for answers!

The Facebook for Female Spouses/partners has been a Godsend!

Has anyone had their loved one do the Syn-One skin biopsy to rule out Lewy Body Dementia?