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

Posted by gail60 @gail60, Jun 19 11:31am

Per the mentor's suggestion, I am starting a thread specific to Caregivers whose Loved One (LO)/spouse/ partner has been diagnosed with dementia while they were younger than 65. This diagnosis is quite different from geriatric Alzheimer's in that it strikes able-bodied people in the prime of their lives while they are still building careers and caring for families. This creates a different set of challenges and the effects of the disease can be physically, emotionally and financially devasting to the patients, their spouses and children.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

gail60 | @gail60 | Jun 20 8:58am

We are seen at Mayo-Jacksonville. Are there any other Early Onset families?

coping123 | @coping123 | Jun 20 9:52am

Great idea! I passed the information along to the Dementia support group I belong to locally. We have a couple of people whose loved ones who have this diagnosis.

laughsloudly | @laughsloudly | Jun 23 8:42am

In reply to @gail60 "We are seen at Mayo-Jacksonville. Are there any other Early Onset families?" + (show)

Hello! My husband is being seen at Mayo Jacksonville as well. He is 53 and I am 46. He doesn’t have a diagnosis yet - still doing testing. It’s strange because some of it points to EOAD (hypometabolism in parietal and temporal lines and precuneus; memory loss, trouble with executive functioning, abnormally low abeta42, unable to work as an attorney), but then other things don’t point to EOAD (no amyloid plaques, normal ptau/abeta42 ratio), so it’s strange. Definitely impacting our day-to-day life though. My husband is seeing Dr. Taner.

What is your situation?

gail60 | @gail60 | Jun 24 10:34am

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.

Scott, Volunteer Mentor | @IndianaScott | Jun 24 5:29pm

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

Colleen Young, Connect Director | @colleenyoung | 5 days ago

@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?

maryvc | @maryvc | 4 days ago

In reply to @laughsloudly "Hello! My husband is being seen at Mayo Jacksonville as well. He is 53 and I..." + (show)

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.

gail60 | @gail60 | 4 days ago

In reply to @colleenyoung "@laughsloudly @gail60, I'm glad you've connected. I'm wondering what tips or tools your families have found..." + (show)

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.