New here- very worried about genetic link

Girlmom

Hello

I am new to this forum, this topic and this new life with my mom. I only have a few minutes to write since I have young children so I will try and be brief! 

After years of wondering about my mom's cognitive decline she is finally being seen by Mayo. Her brain scan and spinal are next month. 

We have tried to talk to her and my dad about this for years and she is now 67. I am 39. The situation is finally serious enough to them. My mom is very private bit now she has told us that many of her dad's sisters had Alzheimer's at an earlier age. 

My family is extremely close. Besides dealing with the extremely painful thoughts about the future with my mom-- I admit I am very nervous about a possible genetic link. From my reading online it seems that developing AZ genetically is rare but if it is found to be genetic there is a 50%chance of passing it on. I have always been a "scatterbrain" since childhood- very busy with 3 young kids and not great organizational skills. Is being forgetful linked to developing this? 

Does anyone have experience or advice? I believe I will be on this forum for many questions in the future. Thank you. 

Marta

Hello, poodle Mom. 

You would get more response if you posted on the caregiver forum. 

Jo C.

Hello and a very warm welcome to you.  Marta is correct, you will get more responses on the Caregiver's Forum.

You can also contact the Alzheimer's Assn. 24 Hour Helpline at (800) 272-3900. If you call, ask to be transferred  to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.

They are very warm and supportive, have much information, and can often assist us with our problem solving.

We are all here in support of one another and that now includes you too!

J.

NotLost

DNA service, 23andMe.com in particular, tests for genetic variants for risk of developing late-onset Alzheimer's disease. I highly recommend getting tested. Though it can cost about $200 or so (they have different packages) but is worth every penny. Your ancestry and all currently scientifically available health predispositions will give you a much better picture of your ancestry and genetic health. And this information, your genotype is yours forever - you can take it (it's just a text file) anywhere for further interpretation.

Best of luck,

Walter 

Jo C.

If one does a lot of reading re the subject, one should NOT use the popular at home DNA kit tests for detecting genetic disease risks; the error rate for false readings has been confirmed by valid science studies. False readings can cause so much fear - you can look such information up using a search. 

IF one wants to know with any degree of accuracy what their health risks are genetically, then one is far best served to do this with a medical DNA lab which will provide much more accurate readings.

As it is; having a positive genetic link to a disease does not mean one is going to develop the disease. 

J.

Sammi163

Hi Girlmom, 

My husband was diagnosed at 39, he is 41 now and I am now initiating in home care; you can always go to the place that your mom had genetic testing done and they will perform the test for you as well. When we had the genetic test done for my husband, they informed us of the 50/50 and that his sons also have the chance of having the gene that they can go to the clinic and request the genetic therapy but they need to be 18 and older. 

I hope this helps! 

I know you posted this a while ago but thought I would respond 

DesG

Check out DIAN-TU at Washington University in St. Louis. This group, Dominantly Inherited Alzheimer's Network, focuses specifically on inherited forms of ALZ. They can even help set up genetic testing for you as well.

Before you begin though, make sure you have considered all the insurance options that you might need. Long-term care insurance, short-term disability, long-term disability, etc. You won't qualify for these after diagnosis. You can always get them set up and cancel them later when you get the great news that you are not positive for the inherited gene.

https://dian.wustl.edu/

Amy Joy

 Hi hope everyone is good.

Sorry to hear about being diagnosed with dementia so young!

It’s hard to believe that dementia has its effect on family members.

I’m almost 53 now when my family and my work started noticing changes in me 

I had to see my doctor.

I was forgetful

I was making mistakes 

I forget my words and memory 

My mom and my older brother have dementia 

My mom moms had dementia 

I’m having signs of memory loss and mental decline on many tests. 

Janutt

Wish you all the best. I am going to have the genetic test done when I go back to the hospital in a few months. My parternal grandmother, her brother, my dad, uncles, & aunt all have this. I was diagnosed about two years ago

Amy Joy

Hi janutt!

I’m sorry to hear about diagnosis.

How are you doing?

It’s so hard to accept and you want to deny it is real.

I wanted to believe that it will all go away.

I will pray for you!

have a good night 🌙

Janutt

Hi Amy Joy,

I am doing okay. I have been diagnosed now with a concussion. The headaches hurt. Yes I will think they have made a mistake with the diagnosis and then I will completely forget to do something else or whatever it is. Like did I brush my teeth,, eat or drink. I guess I will have to see how the neurological pyshyc test goes