16 Mar Early Onset Alzheimer’s Disease

Over the course of the last couple of months there has been a lot of attention brought to Early Onset Alzheimer’s Disease.  Most likely, due to the movie  Still Alice and the attention it received over the award show season. Julianne Moore does an incredible job of portraying Alice Howland who was diagnosed with early onset Alzheimer’s disease.

Early Onset Alzheimer’s Disease is defined as a diagnosis of Alzheimer’s disease before the age of 65. I actually think this attention is very beneficial because often individuals feel that Alzheimer’s disease is specific to the older population.

But in reality, according to the Mayo Clinic, “approximately 5% of those diagnosed with Alzheimer’s disease develop symptoms before the age of 65 years”.

I recently read an article in People Magazine, “Am I Destined to Get Alzheimer’s Disease”.  It is about a young 39 year old woman, Daisy, who is the primary caregiver for her mother, Sonia. Sonia is 59 years old and was diagnosed with early onset familial Alzheimer’s.

Daisy was waiting for results of a genetic test that would reveal whether or not she “carries a gene for early-onset familial Alzheimers. 75% of her mother’s relatives had the disease so there was a “50/50 chance of Daisy inheriting it”. 

The article struck a chord with me and I questioned what I would do in Daisy’s situation. Would I do the genetic test to see whether or not I carry the gene for early-onset Alzheimer’s? If the test is positive it means that one will get Alzheimer’s disease before the age of 65.  What would I do with the information once received?

My great-grandmother, grandmother and great-aunt all had Alzheimer’s disease.  None of them were diagnosed with early-onset Alzheimer’s but do I fear that one day I too may be diagnosed, absolutely.  However, would I want to know if I carried the gene for early-onset Alzheimer’s if they were all diagnosed before the age of 65?

That is such a difficult question because truthfully I am not sure what I would do.

Given my personality I am not sure how I would handle the results if they were positive.  Would I change how I live my life? Would I create a bucket list? Would I plan for my children’s future differently? There are 100’s of questions that I would ask myself.  If I chose not to have the test, would I always live in fear thinking that I was going to be diagnosed with early-onset Alzheimer’s? Every time I forget something or someone would I live in fear that symptoms were taking hold.  All these different scenarios kept playing in my head and I still don’t have an answer of what I would do.

I feel this is a very personal choice and there is no one right way of handling it.  However, after reading several different articles on early onset Alzheimer’s here are some tips to help guide you during this difficult time:

• Plan for your future: The impact of early diagnosis will affect your family.  During the early stage of the disease it is important that a plan is in place to ensure your family understands your wishes for care.
• Meet with a lawyer and/or notary to ensure all legal paperwork is in place i.e. homologation of mandates, power of attorney
• Financial Planning: Look at your finances and make sure you plan for the future.  If you are working, are you still able to work, will your loss of income affect the family?
• Ensure your safety: There are many products available that can help ensure your safety throughout the progression of the disease.
• Support groups: Research what is available in your community to offer you and your family support.
• Driving: This is a very difficult topic of discussion for many, but it is important that you not only consider the safety of yourself but others on the road.  This should be addressed with your primary care physician

Early onset dementia is often diagnosed at an age where you play an active role in your children’s lives, have a career that you’ve built over the course of many years and in some cases you’re in the midst of planning for your retirement.  It is important that you get the support necessary to ensure you remain an active part in the lives of those who depend on you.