Early Onset

lisgon315 · January 22

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?

redjettadi · January 23

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 · January 23

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

lisgon315 · January 23

https://alzconnected.org/discussion/comment/264219#Comment_264219

thank you so much.

lisgon315 · January 23

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 · January 24

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 · January 24

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 · January 26

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 · January 26

thank you so much. This is very helpful.

JPJardinel · July 23

Reading this, what strikes me most is how much love is packed into every word, from the way you have been quietly driving the process of getting her seen while trying not to step on anyone's toes, to the way you are already thinking about how to support her husband and adult children before you have even received the official diagnosis. The positive PET scan is devastating news to be sitting with, especially when you are reading reports before the appointment and trying to make sense of something no one should have to make sense of alone. The fact that she thanks you after every single doctor visit tells you everything you need to know about whether you are overstepping, because people who feel imposed upon do not express gratitude the way she clearly does. At 55, with a family watching and processing this in real time, the road ahead is going to ask a lot of everyone, and finding a space specifically for family members of people with early onset Alzheimer's is one of the wisest things you can do right now for yourself. The Alzheimer's Association has support groups specifically for early onset situations, and the Youngtimers community is one that many siblings and spouses of younger diagnosed individuals have found genuinely helpful. You are not overstepping by caring this much. You are exactly the kind of person she is going to need.

I hope these references can help:

https://hopebridge.care/early-onset-alzheimers-support-for-siblings-and-spouses/

https://en.wikipedia.org/wiki/Early-onset_Alzheimer%27s_disease

https://www.aarp.org/health/conditions-treatments/living-with-early-onset-alzheimers/

MN Chickadee · July 23

Welcome but sorry you are here. Your local chapter of the Alzheimers Association likely has information on support groups in your area. There are also many online communities. This is one of the best places to bounce ideas off seasoned caregivers, ask questions, vent, and all things dementia related. My mother also had EO Alz. She was also approximately 55 when she noticed issues and for years it was brushed over by doctors as stress, depression etc. Soon it became undeniable. She finally got testing and a diagnosis at her own insistence and was told she indeed had Alz. She was one of the more unusual EO patients who lived a really long time with it, nearly 20 years. It began really affecting her life around 60 years old and the way it ended her career was really unfortunate and embarrassing. I was away at college at the time and didn't have the knowledge or wherewithal to do anything, I wish it had gone differently. She enjoyed a few good years of retirement and was still aware of her disease and limitations , doing things she enjoyed until stage 5 set it around 65, then she no longer knew what she didn't know (Anosognosia .) Then came the really difficult years followed by 5 years in a memory care facility. I can tell from your post how much you care for your sister. She is lucky to have you. The only thing that really urgently needs to happen is legal paperwork. POA while she is still competent to sign one and financial planning, so that her spouse and kids are as protected as possible as her care needs ramp up. Make sure they have an elder law attorney to advise them on that part. That is the only thing I would really push on, just because it can be so life altering and her spouse and kids are still young. Some EO folks only live a few years with it, others like my mom are in for the long haul, it's hard to know what the future will bring so spend time with her now, assume the days of her being fully mentally present may be limited and make the most of them now.

Early Onset

Comments

Commonly Used Abbreviations

Community Guidelines

Categories