Alzheimer’s Genetic Testing and YOU – Survey Results are In!

Alzheimer’s Genetic Testing and YOU – Survey Results are In!

Would you want to know?

Recently we came across a research endeavor that followed family members with a genetic link to Alzheimer’s. Many in the study were afraid to join, they didn’t want to know what was coming after watching several family members deal with the currently untreatable disease and eventually lose them to the fight. Others with whom we talked had similar ideas.

Do we really want to know when there is no cure – at least not yet – and few effective treatments?

This dilemma intrigued us enough to ask you for your opinions. We put out this survey to our community of family members and other caregivers to get your insights about this issue.

The results of the survey are not surprising to us but further point to the need to fight Alzheimer’s Disease and work together across not only the United States but also in collaboration with the global community to find a cure.

Your Responses on Alzheimer’s Testing

Question 1: Knowing there is currently no cure for Alzheimer’s, if you could get a test that would indicate if you are more likely than average to develop the disease, would you want to be tested?

  • Yes, I would get tested 43.6%
  • Only if there is a history of Alzheimer’s in my family 31.3%
  • No, I would not get tested 18.3%
  • I just don’t know 12.8%

Question 2: If told there is a cure for Alzheimer’s, if you could get a test that would indicate if you are more likely than average to develop the disease, would you want to be tested?

  • Yes, I would get tested 87.3%
  • Only if there is a history of Alzheimer’s in my family 6.3%
  • No, I would not get tested 6.4%
  • I just don’t know 0.0%

Question 3: Do you have any thoughts on this survey you would like to share? (a sampling of the responses)

  • I would want to know and face any results head on, become informed and make changes if needed.
  • I have a fear of Alzheimer’s since it runs in my family. I have seen the effects of what it did to family members and my fear is if I knew I was destined to get it I wouldn’t be able to live my life the same anymore. I would always be thinking did I do this or that because of the disease.
  • Might be a good idea to ask for the reasons for the answers given; see how many people are driven by fear or a desire to make the most of the time they might have left.
  • I think it would be great to have those tests. Alzheimer’s is an awful disease.

There are many people who have experience with someone who suffers from Alzheimer’s Disease or other dementias and who might have a genetic link present and know firsthand the devastating toll this diagnosis can take on the affected person and their family. These people often feel that getting a diagnosis can mean a long, hard fought battle is ahead of them and may not want to know. Some may question if passing the gene on to the next generation is desired. Others want to become fully educated and prepare in advance as much as possible.

There are many advantages to knowing the diagnosis such as getting personal affairs in order, making end of life wishes known to all family and friends involved, making their home aging in place friendly for the functional changes coming, getting all the legal documents executed in advance and perhaps even making changes to live life to the fullest before cognitive changes hinder enjoyment.

There are pros and cons to both sides and naturally it is a personal decision to make within each family unit.

We thank you all for participating in our survey sharing your thoughts. Clearly an end to Alzheimer’s cannot come soon enough!

2 Responses to Alzheimer’s Genetic Testing and YOU – Survey Results are In!

  1. Thank you for your comments Sherrie! We agree that this is another very difficult and personal decision. We hope to work toward a cure for Alzheimer’s so no one will have to make this choice.

  2. Would I want to know ? ABSOLUTELY!!! I have a strong multi-generational history (maternal & paternal) of Alzheimer’s and refuse to go down without a vicious fight. Recently I was continuing my search for a “forever” study to follow me for the rest of my life. I know they exist and am willing to do anything necessary and/or requested. I had happily agreed to donate my brain to USF Byrd Alzheimer’s Institute and then their funding was discontinued. While being evaluated for another study — part of which was testing for the gene — I received the news that I DO have the gene (as I suspected) rated 4.4 which, of course, I have no idea what that means except was told it is the most severe. Please . . . put me in contact with the family study. I have a large family and will vigorously recruit “volunteers”.

We'd love to hear your thoughts!

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