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Early Onset

lisgon315
lisgon315 Member Posts: 5
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in I Am a Caregiver (General Topics)
Hello. I am new here and came searching for support and connection. My sister, age 55, was Dx with MCI several months ago as the doctors continued all the testing. We just received confirmation that the petscan was positive. Reading the reports before seeing the doctor is so challenging. We have reached out to get an earlier appointment, and this neurologist has been pretty great so far so I hope she is able to be seen ASAP. The likely dx or Alzheimer's will not be surprising - we have seen signs of memory decline during the past 2 years and the neuropsych indicated some cognitive issues. However, the confirmation is devastating. She is so young....and I am bracing myself for how she will take the news. To date, she seems to know something is wrong but chucks it up to not sleeping enough. I want to provide her and her husband and adult children with the most support and encouragement possible.....(note - I have been the one really pushing for her to go to doctors, etc because her everyone in our family "noticed" problems but I think we were all in denial about the extent. So - I sometimes feel like I am overstepping my role (despite the fact that we are super close and she thanks me after every doctor visit)......I never want to make her or anyone in the family feel I am trying to impose......are there online support groups specifically for family members of people living with early onset alzheimer's?

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  • redjettadi
    redjettadi Member Posts: 3
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    I am in the exact same position. Don’t want to overstep but want to get the help necessary. My sister is 66. I am also devastated. Found a lot of good info on this site. We also have not heard from the doctor yet just read the report

  • H1235
    H1235 Member Posts: 1,765
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    Many (maybe even most) with dementia have anosognosia. This is the inability to recognize their symptoms and limitations. There usually is no convincing them of the problems. Even though my mom will admit she has dementia she believes she is in the very very early stages and should be able to live in her home alone. This self confidence can in turn make it even more difficult for family to accept what is happening. My brother insisted mom could do things that she was not capable of (partly because mom said she could do these things). This caused her so much stress and anxiety. It can be very difficult if families have a different view of where the person with dementia is at and how much care is needed. As a sibling I think it is even trickier. I have attached a few resources.


    Anosognosia and Dementia - AgingCare.com.pdf
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  • lisgon315
    lisgon315 Member Posts: 5
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    https://alzconnected.org/discussion/comment/264219#Comment_264219

    thank you so much.

  • lisgon315
    lisgon315 Member Posts: 5
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    Thank you! I will continue to search this site for all the information possible. I hope both our families hear back from the doctors asap.

  • Michele P
    Michele P Member Posts: 368
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    https://alzconnected.org/discussion/75164/early-onset

    Welcome. Until all of the testing is complete, I would wait for a diagnosis. Your sister should have an MRI along with the completed PET scan and the blood test for Alzheimer’s. A neurologist should also do extensive cognitive testing to determine if this is Alzheimer’s. You can have amyloid plaque in your brain and not have Alzheimer’s. My husband has MCI. We thought it was Alzheimer’s until all of the testing was completed and Alzheimer’s was ruled out. I would have the family speak to the neurologist and discuss the test results and any further testing that is necessary for a diagnosis.

  • lisgon315
    lisgon315 Member Posts: 5
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    Hello. You are absolutely right and thank you. The thing is that she has had all the testing done. This was the last test he ordered and based on her last appointment is sounded like if this was positive for the plaque that would be the definitive answer. But you are correct - I should wait until the appointment. However, the memory and cognitive changes have been present for over a year and I read the results so now I am spiraling. I was able to get her appointment changed for sooner so we will be meeting with neurologist in 2 weeks (much better than 3 months)…..in all honestly, a dx is important to detemine course of treatment but the fact that she is struggling and declining remains the same - with or without a diagnosis. :-(.

  • SDianeL
    SDianeL Member Posts: 3,217
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    welcome. Sorry about your sister’s diagnosis. This is the place for help and support. First make sure their legal affairs are in order. DPOA, Medical POA etc. Have all family members read the book “The 36 Hour Day” which explains the disease and offers tips on caregiving. Then the main caregivers should search online for dementia caregiving videos by Tam Cummings or Teepa Snow which are very helpful. Have them come here often for help and support. We know what they are going through. There is also a toll free number at the bottom of the page they can call for resources in their area.

  • lisgon315
    lisgon315 Member Posts: 5
    First Comment
    Member

    thank you so much. This is very helpful.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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