The Genetic Link

[Sarah Krueger]

Two months ago, I sat in a doctor's office at the University of Washington Memory Clinic with my mother and grandmother. We were discussing the pros and cons of genetic testing. As the caregiver for my mother (early onset Alzheimer's) and my grandmother (fairly early onset - in her mid to late 60's), I am understandably curious and concered about the origin of this disease among my maternal line. The doctor presented the options for genetic testing - which may cost more than we can pay, which may not present definitive answers, and which may serve me a genetic life sentence I am too young to serve.

The doctor's counsel steered me away from testing, but her reasoning felt flawed. At one point she said to me "early onset is very rare, the chances you could inherit it are slim." I nooded, looked at my mother and grandmother, and wondered that if the odds are so slim, how is it that both my mom and grandmother have the disease?

I am 28. I always imagined myself having a family. I'm not ready for children right now, caregiving is enough. But sometimes I wonder if its even ethical to consider having children if I might possibly carry the genetic link to such a horrible disease. I find myself at times mourning a child I may never have.

It's been some time since the initial counsel with the doctor, and I've decided to look further into testing my mother. She has always said she wants to know more about why she has this disease. If she carries the genetic indicator for early onset, my own chances are 50/50. If she does not exhibit the gene, I would feel a bit of burden lifted. If she does exhibit the gene, I could choose to test myself... That will be a debate in itself. There are heavy implications - a positive test could alter my eligibility for long term life insurance or health insurance, not to mention the psychological and emotional dimensions to such a prognosis.

Well I'm still debating all this and I'm curious to hear if others have explored the option of genetic testing. As I pursue this I will try to keep you posted.

[Max Larkin]

I think about my genes all the time. I throw off the worry of carrying the Young Onset Dementia gene because my Father is the only one in our family with it. Though the ethical choices are impossible to ignore. In addition to passing on my genes to my children as mentioned, I also wonder about bringing a spouse down the long road of this disease. After seeing a spouse (my mother) go through the emotional and physical strain of Young Onset Dementia for me knowing I had the disease might affect my relationships. I might start pushing people away to protect them, etc...

Very complicated questions and I look forward to learning what others think.

Thanks Sarah,

Max

[Emily]

Hey Sarah-

I'm glad you brought up these very real and challenging points. I'm not sure what I would do. Receiving a positive test would change everything, and it would be very difficult to live without that hovering over every decision- especially having children. On the other hand, not testing enables worry for the unknown. But either way, living in fear about the future sucks. And that's what Young Onset enables.

I read a blog entry title "The Importance of Genetic Testing" by a woman with EOAD. She's been advocating genetic testing for 17 years, and brings up the benefits of knowing what you have while you're still highly functional. It's posted under the "Resource" page on spokeyourmind.org, but you can also read here: http://alzheimersaverted.blogspot.com/

[Joy Walker]

I have never considered testing. There is no history in my family other than my father; and I think his is largely environmental and long-term depression related. I am, however, very sorry to hear about your situation. To have two loved ones to care for is almost unimaginable. Props to you for all the things I know you do during the day. I had to do them for one person, and that was enough!

[Sarah Krueger]

Thanks for the link, Emily - this blog is quite interesting. Her philosophy on testing sounds like something I could embrace - that there is empowerment in knowledge, that a genetic indicator is not necessarily a damnation, but a call to action.

I am also very curious about the naturopathic remedies she is taking - the standard dementia drugs made my mom very unstable, so now she is on very little meds. I would love to have a naturopath see her, but not sure yet if Medicaid covers that...

Emily said:

Hey Sarah-

I'm glad you brought up these very real and challenging points. I'm not sure what I would do. Receiving a positive test would change everything, and it would be very difficult to live without that hovering over every decision- especially having children. On the other hand, not testing enables worry for the unknown. But either way, living in fear about the future sucks. And that's what Young Onset enables.

I read a blog entry title "The Importance of Genetic Testing" by a woman with EOAD. She's been advocating genetic testing for 17 years, and brings up the benefits of knowing what you have while you're still highly functional. It's posted under the "Resource" page on spokeyourmind.org, but you can also read here: http://alzheimersaverted.blogspot.com/

[Sarah Krueger]

Joy, I'm interested in what environmental factors might be at play with your father's condition? With the global increase in Alzheimer's I cannot help but wonder what toxins might be to blame.

My Mom stuggled with depression, too. In fact, her initial decline came right along with her divorce from my father - no one ever doubted it was anything but depression until things got really bad. I'm not sure I believe that depression lead her to dementia, but I think it affected her resilency.

Regarding my situation, my mom and grandma are together in an adult family home - so I do not have the day to day tasks of caregiving, but rather the overall management of their care and business. I have surpised even myself with my ability to step up to my new role, but I know it would be a different story all together if I lived with them. I have great respect for those who manage to take care of loved ones in their home.


Joy Walker said:

I have never considered testing. There is no history in my family other than my father; and I think his is largely environmental and long-term depression related. I am, however, very sorry to hear about your situation. To have two loved ones to care for is almost unimaginable. Props to you for all the things I know you do during the day. I had to do them for one person, and that was enough!

[Sarah Krueger]

Hey Max, marriage is another thing I've wondered about, myself - but had not considered the implications with genetic testing. What would I do if I took the genetic test and it indicated probable Early Onset? Entering a marriage with such knowledge would be challenging for both parties. And of course the idea of facing such a fate alone is scary, too.

My parents got divorced right before my Mom started showing symptoms. I love my Dad, but I'm not sure he would have been a good caregiver for my Mom. When it comes down to it, my mom's best friend and neighbor did more to help take care of her than my father could ever handle - he has a hard time dealing with emotional matters. Anyhow, the point being is that my own experience leads me to be a little skeptical that I could count on my would-be life partner. Knowing that I am "destined" for diseases would probably aggrevate that paranoia :0

Since I wrote this initial post, I've stopped playing phone tag with the genetic counselers. I've realized I'm not ready for testing - emotionally or even financially.

Thanks ya'll for sharing your thoughts.

Max Larkin said:

I think about my genes all the time. I throw off the worry of carrying the Young Onset Dementia gene because my Father is the only one in our family with it. Though the ethical choices are impossible to ignore. In addition to passing on my genes to my children as mentioned, I also wonder about bringing a spouse down the long road of this disease. After seeing a spouse (my mother) go through the emotional and physical strain of Young Onset Dementia for me knowing I had the disease might affect my relationships. I might start pushing people away to protect them, etc...

Very complicated questions and I look forward to learning what others think.

Thanks Sarah,

Max

[Danele Byrd]

There are test studies out there that may cover the cost of your mother's testing. I went through UCLA and they let me know that my father's was geneticly linked.
ClinicalTrials.GOV
Though they feel I am too young (30) to get tested myself, I often wonder if I too have that mutated gene. But I decided that I was going to live life knowing it could happen...so enjoy it all now and plan for the worst. I was 29 when I signed up for long term health care.
I can related to the part about not being ready for children when you are a caregiver. I told people I had a 63 year old son. Now that he is gone I crave a child but I often wonder if it is just because I miss caring for my dad and I have that empty nest syndrome.
My father's dementia became noticable after his mother died. He was so depressed and suicidal. He was 54 and I was 21. I started to take care of him when he turned 56.
I cant imagine managing the care for 2 loved ones knowing how it is with one. Thank you for being there for them. I saw so many others abandoned. So thank you for being strong. You may think like I do..."why wouldnt I" but you would be surprised how many walk away.

Danielle

[Barbara]

Sarah,

I feel your pain. It is a question I struggle with daily. I've decided I'm not ready to be tested yet, but I will get tested when we have all our financial ducks in a row.

Here's what one amazing woman has done after finding out she has frontal temporal dementia (FTD): http://ftdtheotherdementia.com/index.html

Another woman I know who tested positive for a genetic mutation related to dementia has personally met with her state congressmen and senators to educate them about this disease and impacts of health care policy on early onset dementia patients and their families.

I have learned from these two women (and from Max and Emily through this site) that it is possible to turn the tragedy of early onset dementia into an opportunity to teach others about this disease and help future generations. It's the one thing that gives me hope.

[srgwnm]

My father died in 2007 of Lewy Body Disease. It's taken me almost this much time to process all of this, and deal with coming to terms, perhaps with my own future. His sister died in 2006, same disease. His older brother and sister also are ill. They live in the UK, so I don't know how much time they have left. In our family from noticeable onset - it is about 5 years. What I have learned is Lewy Body Disease is very different then Alzheimer's. It's important to know which one is on the table so to speak. With LBD, for example, two weeks before my father died, we had lunch in the hospital, I fed him that afternoon, and I kissed his forehead so gently, and said "you were the best dad ever... he replied in his soft voice, "Janie, you were a good kid"

He discussed our finances to make sure that everything would be ok, and sorted out. He knew who he was, he knew all of us. He made new memories. He wasn't lucid all of the time, living in his vivid hallucinations most of the time.

I contacted a researcher in the UK, and was told that LBD was more common in men then woman, and that Alzheimer Disease is found more in women. I was also told that it is passed as autosomal dominant.

I learned that, if I have received the gene, that I WILL pass it to my son. In Canada here, there is just my sister and I. She has 2 girls, and I have one son. We don't talk about it much anymore. I live on the West Coast, She lives in the East. For me, I try not to think about it. I'm 43 now - and I live each day with meaning and life.

I don't save more money then I need, instead - I travel, and ski, and hike the mountains. I was told that there was no definite genetic test which I could take (that was 2 years ago). I do however - take as many anti-inflammatory drugs as I need! I have arthritis in my spine, and I learned through my travels in life that people with arthritis that take certain medications are less at risk, as the drug that helps the arthritis protects the brain from damage. So... that was a no brainer.

I guess, I just brace for the worst... and take each day like a gift, and hope that drug research catches up with my age and that of my son.

If I ever learned anything in life, that is "money" has to be a motivator for drug companies. Viagra was a "hit" for that trade... But as the demand for Dementia Drugs increases over the next 10 years so with the opportunity for Pharmaceutical Companies to rise up and fill that challenge!

Do I want to know if I have that gene?

Not really... it doesn't change this day, this year.... this time.