The 2014 Oscars made history for the world of Alzheimer’s disease as Julianne Moore won the Oscar for best actress in the film Still Alice, a film about the life of a woman diagnosed with early onset Alzheimer’s. Based on the book written by Lisa Genova, the world took real notice of a disease that is reaching epidemic levels around the world; leaving us all to ask “What if?”
Moore’s character, Dr. Alice Howland, was a 50 year old linguistics professor at Columbia University when she was diagnosed with early onset Alzheimer’s. After finding that she inherited the gene from her father her three grown children had to choose if they wanted to find out if they too carried the gene. Her oldest daughter, pregnant with twins, tested positive; while her twins were negative for carrying the gene. Her son, a junior doctor tested negative and her other daughter made the decision to not be tested.
Testing For Alzheimer’s
- There are genetic tests used to determine the risk factor of being diagnosed with Alzheimer’s; however, they are not 100% accurate in determining if you will definitely have Alzheimer’s.
- Early onset Alzheimer’s generally occurs between the ages of 30 and 60.
- Early onset Alzheimer’s is most often caused by a mutated gene inherited by a family member (usually a parent) and is called familial Alzheimer’s disease or (FAD).
- Currently, the U.S. National Institute of Health (NIH) feels that genetic testing will most likely never be able to 100% correctly predict the disease due to a number of other factors that can highly influence the development of Alzheimer’s and its progression.
- There is an international group Dominantly Inherited Alzheimer Network (DIAN), which studies families with the genetic mutation known to cause early-onset Alzheimer’s disease.
- Early-onset Alzheimer’s diagnoses represent less than 5% of all Alzheimer’s cases.
Genetic testing for Alzheimer’s does not guarantee you will or will not be diagnosed with Alzheimer’s, only if you are at increased risk. There are other factors that play into whether or not the known gene mutates into the gene which seems to create a breakdown that creates forms of amyloid plaques (consistent with all Alzheimer’s patients) in the brain.
To Test or Not To Test
In the beginning, Alice had a plan to end her life when she became ill. Strategically planning out the entire way to end her life once her mind was no longer working was what she thought was best. She came to this conclusion once she knew that she would die from Alzheimer’s disease. No spoiler here on whether she changes her mind or she chooses to live life to the end of her given time.
Many have different views on this idea and I don’t believe there is ever going to be an agreement on that thought. However, I can share what a woman told me about her own mother who was diagnosed with early onset Alzheimer’s.
If my mother had decided to take her life when she could still realize she was slipping away, we would have missed much joy and laughter as a family.
Most of all, we would have missed her last birthday celebration. She not only smiled non-stop at the surprise party, but she ate like a trooper, opened gifts and seemed so very ‘there’ with us.
We would hve missed quiet times sitting outside in the gazebo while looking at the flowers, the birds, and the sky (smiling).
We would have missed playing UNO and ‘wheelchair races.’ Those few memories we made far outweighed the days where she wasn’t really with us and we missed her.
Whether portrayed on film, book or in real life, Alzheimer’s disease is not easy for anyone. Deciding whether or not to test to see if you are at risk is a very personal decision; for everyone who has Alzheimer’s or someone they love who is affected, we all hope for a cure to come.
Materials Referenced:
NIH – Alzheimer’s Genetics Testing
ABOUT THE AUTHOR
JOYCE APPERSON, RN, GCM
Joyce Apperson is a Registered Nurse and Geriatric Care Manager with 15 plus years of experience working with advocating for seniors. She is the founder and President of Caring Connection, Inc., which provides in-home care and geriatric care management in Harford County, Baltimore County and Cecil County in Maryland. Joyce currently serves on the Harford County Advisory Board on Aging. In addition to writing articles here for the Caring Connection’s blog, Joyce has been a regular contributor on senior care topics to the County Gazette and an advisory board member for her local Area Agency on Aging.