My alzheimer's was confirmed by a brain scan - my mother and her mother both had alzheimer's. I have a daughter - so I would like to get tested for gene and, if it's positive, suggest that she take the test too - any suggestion for where to go for genetic testing? Thanks
I have alzheimer's - suggested for where to go for genetic testing for the gene
- Thread starter JSH1000
- Start date
Hello @JSH1000, welcome to the forum. I hope you find this to be a friendly, informative and supportive place.
There is a Society Factsheet about this topic. If you want to read and/or print the Factsheet just click the PDF line of the following link
Genetics of dementia (405)
PDF printable version
I agree the first action would be a visit to the GP.
There is a Society Factsheet about this topic. If you want to read and/or print the Factsheet just click the PDF line of the following link
Genetics of dementia (405)
PDF printable version
I agree the first action would be a visit to the GP.
I didn't think you needed a gene test if you already have a diagnosis. As far as I know it just gives an indication of likelihood of developing Alzheimer's in later life.
Taking a gene test is a highly individual decision that not everyone wants to take. You can suggest it but please don't be disappointed if she doesn't want to.
Taking a gene test is a highly individual decision that not everyone wants to take. You can suggest it but please don't be disappointed if she doesn't want to.
You might find these links useful, which recommend counselling prior to genetic testing:
https://www.alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/genetic-testing
https://www.alzheimers.org.uk/sites/default/files/pdf/factsheet_genetics_of_dementia.pdf
https://www.alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/genetic-testing
https://www.alzheimers.org.uk/sites/default/files/pdf/factsheet_genetics_of_dementia.pdf
thanks for the input because of it I completely agree - I want to take the test because I want to know if I carry the gene (I like to know everything I can!) and if so, assuming I tell them I took the test and have the results, my daughter (& son for that matter) will have to decide for themselves about wanting to know for themselves or not. It's totally their choice and in fact I would encourage them not to do it without the counseling first - they don't need to carry that load around!!!
Hello @JSH1000 , I'm recently new to the forum, however wanted to know if you'd progressed any further? From my experience, as my father has a dementia diagnosis and faulty gene, I took the letter confirming the diagnosis and gene to my local GP and was referred to a specialist Genetics Clinic. I had to wait a little while for an appointment, but you first attend genetic counselling sessions, at least 2 before you can take the test. I haven't yet taken the test so that's the stage I'm at. Let me know if I can help on any questions
My gran had dementia and my mam has just been diagnosed with Alzheimer’s. I am worried that I may be next but like anything I could get cancer who knows. I don’t want to play guessing games I will take my chances and just live my life.x
As a daughter of someone with dementia, the thought about genetics crossed my mind 6 years ago at diagnosis. I have since then had 2 beautiful daughters and I change daily from thinking I want to know to not wanting to know. All I can do is contribute to research and give my family the best life they deserve dementia or not.
