Genetics and Alzheimer's Disease
March 4, 2002

This chat has been produced by ElderCare Online and the Taub Institute for Research on Alzheimer's Disease and the Aging Brain. Alzheimer's Answers is an educational forum where caregivers can connect with professionals and clinicians to understand Alzheimer's Disease. This Chat Room provides general information that is for educational purposes only and should not be considered as offering medical advice. The information that is made available by this Chat Room should not be used for diagnosing or treating a medical or other health condition. Viewers and participants should always consult a physician or other qualified healthcare provider for the diagnosis or treatment of any medical or health condition. ElderCare Online, the Taub Institute of Jennifer Williamson MAKE NO WARRANTIES, EXPRESS OR IMPLIED, AS TO THE VALUE, USEFULNESS, COMPLETENESS OR ACCURACY OF ANY OF THE INFORMATION THAT IS MADE AVAILABLE BY THIS CHAT ROOM.

Ms. Williamson (This user has entered ElderCare Chatroom)

CMW (This user has entered ElderCare Chatroom)

RichOBoyle (This user has entered ElderCare Chatroom)

AL11
Hello Ms. Williamson

Ms. Williamson
Hello!

RichOBoyle
Hello AL and welcome

RichOBoyle
let's wait for 1-2 more people to arrive before we get started

AL11
Oh - alright

RichOBoyle
AL, are you a caregiver?

AL11
Yes my husband has AD

RichOBoyle
Our topic is on genetics and Alzheimer's Disease today

RichOBoyle
may I ask how old he is?

RichOBoyle
Ms. Williamson, why don't we start with some basic background... what is your role at Taub?

AL11
77

PH19andU (This user has entered ElderCare Chatroom)

Ms. Williamson
I am the genetic counselor. I meet with families with our neurologists and work with families who participate in our genetic research studies.

RichOBoyle
Hello PH19 and welcome

PH19andU
hello

PH19andU
and thank you

RichOBoyle
we are just getting started... Ms. Williamson will introduce herself, and then we can take some questiosn from each of you

AL11
I have a basic question and I ask it because of my children. Is ad inherited?

RichOBoyle
AD is both a genetic and sporadic disease... Is there any data on how common both varieties are?

Ms. Williamson
I meet with families to discuss their family history of Alzheimer's Disease, options for genetic testing and current research.

Ms. Williamson
Most Alzheimer's Disease is sporadic.

Ms. Williamson
However, genetic factors play a role in the disease.

RichOBoyle
can you be more specific?

denise (This user has entered ElderCare Chatroom)

Ms. Williamson
Both age and family history are risk factors for AD

RichOBoyle
Hello Denise and welcome...

denise
hi all

RichOBoyle
we are just getting started with our discussion of genetics and Alzheimer's Disease

Mema (This user has entered ElderCare Chatroom)

RichOBoyle
Hello Mema and welcome... we are just getting started with our discussion of genetics and Alzheimer's Disease

denise
thanks forgot why I was remembering to be here.No pun intended

Mema
good afternoon

Ms. Williamson
Rich - your question about familial AD I would say approximately 25-30% is familial.

RichOBoyle
Is familial AD more often early onset?

Ms. Williamson
No. Familial early onset AD is very rare (approximately 5% of all AD)

RichOBoyle
Is there an easy way to tell if a person has the genetic or familial variety?

Ms. Williamson
Genetic and familial - is the same. The issue is whether we know what gene is causing the disease.

Mema
I don't want to sound really stupid but what is familial AD?

Ms. Williamson
For example

Ms. Williamson
Familial meaning has a family history of 2 or more closely related people with the disease

Mema
ok thank you

Ms. Williamson
That is our simple definition

Ms. Williamson
There are 4 known genes associated with AD

RichOBoyle
in simple terms... what are the risks assoiated with getting AD; with getting AD if one parent had it; and getting AD if both parents have it?

Ms. Williamson
Everyone has a risk to get AD

Ms. Williamson
With a family history a person has an increased risk -approximately 2x's the background risk

RichOBoyle
Does anyone have a question that they would like to pose?

Sugarlips (This user has entered ElderCare Chatroom)

CMW
Is there any test that can tell whether a person will have a memory problem?

RichOBoyle
Hello Sugarlips and welcome

Sugarlips
Hi Rich

Mema
My mom was recently diagnosed with AD and my husband and I moved down here to live with her because the doctor said that she really shouldn't live alone anymore. Is there anything that I as a caregiver should know or look out for?

Ms. Williamson
As far as genetic testing....there is genetic testing for early onset AD, however it does not predict when a person will develop AD

RichOBoyle
What does it show? That the person has the gene for it?

Ms. Williamson
If a mutation (or change in a gene) has been found in one of the 3 genes associated with Early onset AD

RichOBoyle
Mema, we have regular nightly chat session where we discuss hands-on caregiving issues. you can also visit the message board for posted tips and suggestions.

Mema
My sisters and I were also wondering how much of a chance we will develop this.

Mema
Thank you

RichOBoyle
It is difficult for Ms. Williamson to speak directly to your situation, but she can speak generally

Ms. Williamson
If you want very specific information then you can speak to a genetic counselor who has experience with AD or other dementias

Emmee (This user has entered ElderCare Chatroom)

Ms. Williamson
Or a neurologist who is experience in dementia and genetics

RichOBoyle
Hello Emmee and welcome

RichOBoyle
we are discussing genetics and Alzheimer's Disease.

Ms. Williamson
A genetic counselor can review a person's family history to determine if genetic testing is available, discuss the benefits risks and limitations of the test

Sugarlips
How accurate is the test?

CMW
If a family seems to get AD at an early age, are there any odds on its likelihood or is this difficult to say?

Ms. Williamson
Accuracy depends.

RichOBoyle
ElderCare Online has a basic article on genetics and AD at http://www.ec-online.net/Knowledge/articles/genetics.html

Ms. Williamson
Odds - the family history can sometimes help with the interpretation of risk to unaffected relatives, but not always.

Ms. Williamson
Family history may also be difficult to interpret because people may have died at a young age of other causes.

RichOBoyle
Many family members worry that they are at risk for AD when they see a loved get it... How would you help to alleviate that fear?

Emmee
Do you recommend any particular diet or any supplementation to lessen the risk?

Ms. Williamson
I think more in depth counseling often helps people better understand the risk, the disease and cope with this

RichOBoyle
The Taub Institute at Columbia University is located at http://www.alzheimercenter.org

Ms. Williamson
There are no specific recommendations yet but there are studies ongoing.

Ms. Williamson
There are studies of estrogen

CMW
I know that a definitive diagnosis of AD can only be made upon death, and have read a little about brain donation. How can doing this help?

RichOBoyle
I have read about a recent controversey: A woman who has the gene for AD decided to screen her eggs for an egg that would not have the gene. She gave birth to a healthy child without the gene... Did I get the story straight?

Ms. Williamson
First the brain donation question

Ms. Williamson
This is an excellent question

Ms. Williamson
The diagnosis of AD is only certain upon autopsy confirmation

Ms. Williamson
For the purposes of genetic counseling and testing.

Ms. Williamson
Autopsy is very important in order to know that we are counseling appropriately and testing for the correct disease in the unaffected family member.

Ms. Williamson
Regarding the other question.

Ms. Williamson
This was a case of preimplantation genetic diagnosis for early onset AD

Ozark (This user has entered ElderCare Chatroom)

RichOBoyle
Hello Ozark and welcome... we are discussing genetics and Alzheimer's Disease

Ms. Williamson
This person knew that they had inherited a mutation in one of the three known genes that cause early onset AD - the APP gene

Ozark
What about people who don't have early onset, but develop ALZ after 80? Is this genetic?

Ms. Williamson
The embryos were tested and only those that did not inherit the disease causing mutation were used to attempt pregancy. This uses genetics and Invitro technology

Ms. Williamson
Most late onset AD is sporadic

Ms. Williamson
Sometime we see families where many individuals are affected with late onset ad

Ozark
Meaning, could be a lot of different causes?

Ms. Williamson
Genetic factors play a role in AD

Emmee
Mother's mother was schizophrenic; is that related to Mother's AD?

Ms. Williamson
We are trying to understand through our research what factors - genetic and environmental are involved in AD.

Ozark
Genetic factors play a role in what way: Predisposition

Ms. Williamson
Yes increasing a person's risk

Mema
I have to leave...will the rest of this discussion be posted somewhere later?

Ozark
Oops! There is longetivity on both sides of my family, also dementia. Are there ways to help myself in the long run --

Ms. Williamson
We are studying both at Taub

Ms. Williamson
There are no known ways to prevent AD.

Ms. Williamson
However, general good health is always important - good diet and exercise

Ozark
Are there research programs going on in the MIdwest? Are they looking for participants?

Ms. Williamson
There is research everywhere. Check http://www.centerwatch.com or ElderCare Online's Medical Research Assistant.

Ms. Williamson
Also check the National Institutes of Health website

Ozark
Like almost everyone, I never expected to be in this position. Now I want to know as much as possible.

Ozark
Thank you for the information. Checking out.

Emmee
How does one arrange for an autopsy for one's LO?

Ms. Williamson
It is great that you want to learn more. There is a lot of information available on the web, but you can also call our education coordinator at 212-305-2435.

Ms. Williamson
Autopsy - good question.

Ms. Williamson
We can arrange that at our center

Ms. Williamson
If you are in the NY area

Ms. Williamson
Or we can find a center for you

Ms. Williamson (ID=7) (Mar 4, 2002 2:02:17 PM)
Our website has info at http://www.alzheimercenter.org

Emmee
We're in Atlanta, and have arranged earlier to donate Mother's body to the U of GA for research.

Ms. Williamson
It is great that you are contributing in this way. It is so helpful for research in their quest to understand this disease.

Emmee
But can we get input from the results?

Ms. Williamson
You need to talk to the people in GA. At our institute we do give the results

Sugarlips
I have to go now. Thank you very much.

Ms. Williamson
Any more questions since our time is almost up

Ms. Williamson
Thanks for allowing me to participate.

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