
- With Mayo Clinic health education outreach coordinator
Angela Lunde
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Angela Lunde
Angela Lunde is a dementia education specialist in the education core of Mayo Clinic's Alzheimer's Disease Research Center at the Abigail Van Buren Alzheimer's Disease Research Clinic in Rochester, Minn.
Angela Lunde
The transfer of information about dementias, as well as understanding the need for participation in clinical trials, is an essential component of the education core.
Angela is a member of the Alzheimer's Association board of directors and co-chair of the annual Minnesota Dementia Conference. She is a member of the Dementia Behavior Assessment and Response Team (D-BART), a multidisciplinary outreach service assisting professional and family caregivers in understanding and managing difficult behaviors often present in dementia. She facilitates several support groups, including Memory Club, an early-stage education and support series, and more recently, helped to develop and now deliver Healthy Action to Benefit Independence and Thinking (HABIT), a 10-day cognitive rehab and wellness program for people with mild cognitive impairment.
Angela takes a personal interest in understanding the complex changes that take place within relationships and among families when dementia is present. She is particularly interested in providing innovative and accessible ways for people with dementia and their families to receive information and participate in valuable programs that promote well-being.
"Amid a devastating disease, there are tools, therapies, programs and ways to cope, and it is vital that families are connected to these resources," she says.
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Alzheimer's blog
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March 12, 2008
A word of caution on genetic tests
By Angela Lunde
You may be hearing that the first genetic test to be sold directly to consumers will become available this spring — a saliva test that can determine whether an individual has an increased risk for Alzheimer's.
A test of this nature may peak curiosity and interest for many of you; however, with a devastating disease like Alzheimer's our desire for answers is often a good news, bad news deal. There is no doubt that we want, and expect, the scientists to make progress in understanding the processes that cause Alzheimer's and other dementias.
Yet, these processes are complex and it is taking a great deal of time for the scientists to piece together the puzzle. As we wait, we may be inclined to use some of the pieces of the puzzle even when the picture is incomplete. So it is with some of the genetic information that has been gleaned over the past few years, especially regarding the apolipoprotein E gene (ApoE).
In general, researchers have identified an increased risk of developing Alzheimer's related to the apolipoprotein E gene found on chromosome 19. The ApoE gene comes in several different forms. The form or type we each carry influences our risk. However, there is no form that indicates Alzheimer's is certain. Some people carry the highest risk form and do not develop clinical signs of Alzheimer's, while others will.
So, having said all of this, one company is providing a test directly to the public that will provide their unique ApoE gene type. There are concerns with this. First, medical professionals believe that genetic testing should always be done as part of a process that also includes genetic counseling, which does not appear to be the case here.
Moreover, many people who don't carry the risky ApoE gene still develop Alzheimer's and conversely many people that carry one copy of it, don't get Alzheimer's. Bottom line, knowing your own gene type tells you nothing definitive about your risk of developing Alzheimer's. This is why the overwhelming consensus in the field has been not to offer ApoE genotyping to the general public. Yet people want answers and at least one company is prepared to capitalize on that.
16 comments posted
March 24, 2013 7:36 p.m.
I am a 59 year old female. Both my mother and her mother died of Alzheimer's. I have tested positive for the APOe3 and APOe4 genes, so I know that I am definitely at risk. However, I am very glad to know, because this way I can do all that I possibly can to stave off the disease, as well as to make and write down my wishes while I am still capable. It also allows me to concentrate on what I would like to do now, while I can. I hope to avoid AD, but you never know. I am glad to know my risk; not knowing is horrible.
- Bobbie
April 9, 2011 5:49 a.m.
The irreversible condition that is Alzheimer's sickness afflicts over 5.4 million individuals. Researchers continue to search for a toehold against the sickness, and genetics will no doubt play a role. In fact, Time magazine states that genetics has opened a brand new pathway of discovery in the Alzheimer's war. Five genes - MS4A, CD2AP, CD33, EPHA1 and ABCA7 - have been identified as markers of increased risk of contracting late-onset Alzheimer's. The proof is here: Five new Alzheimer's genes discovered
- annje
November 12, 2009 8:56 a.m.
I am 78 yrs old. I was 74 when I was diagnosed with MCI at a local teaching hospital. I needed a new primary care doc since I moved to a different area. 16 months ago I found a Geriatric suitablee. The 1st thing he told me was that I did not have AD. I did not press him for an explaination. I assumed the presidigeous hospital knew best. That may have been a mistake. 3 months into being his patient I had a seizure....then I thought about what he said. I asked him about his statement, his answer was that he likely had more AD patients and knew what his experience was. So now I have an appt to a better Nationally known teaching hospital that has a momory clinic. Could the 1st diagnosis have been wrong? At this point, I feel more "with it" than many of my peers. I don't get lost, don't forget many words, take care of my money & function normally, or in any way feel that I have AD. I seem to function as good or better than my peers. This AD has changed my life in mearsuredably....and what if it is not right. Is there anyone else so foolish as to not have gotten a 2nd opinion? God help us. Nadine
- Nadine
May 10, 2009 5:08 p.m.
My mother was diagnosed at age 54, but in hindsight she had symptoms long before. It has been difficult to slowly lose her over the past 12 years. There is a part of me that wants to know if I carry one of the three early onset genes. And another paret of me that says we can go at any time, disease or not. Live life to it's fullest each day. That being said, I am a single mom to 2 young chidren and I am 44 years old. Since my mother was diagnosed I have done all the "right" things, eating very healthy, taking the supplements, exercising, etc. I am attempting to do the best I can. If I knew I carried the gene, what would I do differently? Live even more in the now, set things up ahead of time for my absence, journal more often for my kids. I would also consider entering research studies trying new medications.
- Caroline
April 22, 2009 10:26 p.m.
My sister-in-law was just diagnosed with EOAD at 52 at a very advanced stage. I am just learning about Early Onset Alzheimer's. We now know she has had symptoms for quite a few years that where blamed on other things. Our eyes are just opening. I also now suspect that my husband might have what his sister does, he is 3 years younger. I blamed his forgetfulness on him not paying attention to me, but more things are happening more often and he does not want to get tested. Where do I start? I don't know where to turn and would welcome someone to offer advise. I also have 4 children. The oldest told me that she is worried too, cause dad just is not who he was... He is forgetting huge events and things. Please help....
- agnelson
October 3, 2008 8:16 p.m.
My dad was diagnosed with AD 4 years ago. He is now 67, and can no longer dress himself, feed himself, and remembers no one in his family. His doctor confirms he has EOAD. I am a single mom of two, and I am scared. I am fairly confident that I want to go through with genetic testing. I want to treasure the memories with my children today, and hopefully make lasting memories for them as well. I also feel I can at least financially plan for the future better armed with that information. With the GINA act that passed this year, I feel that discrimination based on the testing would be reduced greatly. I also want to be able to discuss this horrible disease with my children when they are older, allowing them to make the same empowering decision. I can't change the fate of my health, but I can change the way I live now.
- Deb
October 1, 2008 10:31 a.m.
My mother passed away in 2006 from a CVA having been diagnosed with AD 5 yrs earlier. My parents worked long and hard for their retirement security and made many plans on how they would travel and spend their retirement years. My parents never got to see those wonderful years; they were spent instead with my father caring for mom, keeping her safe and comforting her. I want to know as early as possible if I will develop AD so that I might prepare my family. Primarily, I would want to spend as much quality time with those I love and make sure they know that I love them. Families need solid closure...not just "...I wish had said or done..." Definitely!
- Diane Collins
September 28, 2008 8:33 p.m.
THere is no sense in worrying about this dreaded disease. I suppose i have a pretty good chance of inherting this disease...so i want to know now at the age of 49..i think not.
- debbie
August 3, 2008 6:30 p.m.
I have been a diabetic since 1968.(I'm 70 now)When my blood sugar is up I cant think right.I hope I dont develop a dementia. My Dad had postsurgical physophenia. Will this happen to me? He was a bad diabetic also.
- nora garrett
August 1, 2008 12:54 p.m.
Recently Charlie Rose interviewed several people (researchers and phsycians) involved in genetic research. One reason not to be tested is that there is no cure for alzheimers at this time.
- Anne Manzer
June 4, 2008 2:33 p.m.
Something to be aware of. Statin drug side effects (amnesia and joint/muscle pain) may appear to be Alzheimer's and arthritis. For information: Business Week article Jan 17, 08.
- Colby
April 23, 2008 6:34 p.m.
My father and mother married a brother and sister. The sister of my mother died from Alzheimer's Disease, She was 82 years old. I also wonder if I would carry this gene. But would I have testing ,I don't know for sure.
- Lorrie Pappas
March 31, 2008 10:17 a.m.
My mother hid her symptoms for several years before Alzheimer's Disease overtook her mind at the age of 69. She lost her ability to speak at age 70 and her system finally shut down, just short of her 75th birthday. My sister and I take after her side of the family and we are both scared for our families if we inherit it also. I am worried about genetic testing because the insurance company would have information about this and could possibly mean that I wouldn't be insured if I was to find I would develop AD in the future.
- Marcia Long
March 14, 2008 3:09 p.m.
Thank you for an interesting article discussing the pros and cons of genetic testing for Alzheimer's disease. I would like to point out that the company I believe you are referring to not only includes genetic counseling, but mandates it. You are required to go through a screening process, pre-test education and a phone consultation with a genetic counselor in order to receive your genotype results.
- Karen Hanson, M.S., M.B.A., Director of Clinical Operations, Smart Genetics, Alzheimer's Mirror
March 13, 2008 11:38 a.m.
I am 38 and my Dad has EOAD. We found out 3 years ago and my Dad ia already in the last stages of AD. My Dad is 57. I am scared to death for my Dad my step Mom who takes care of him and me. Having it be possible that this could happen to me is a nightmare. I dont' understand. None of my family history show anyone else with AD. I am really scared and even after reading this article I am going to call my doctor and get her advise. This is such a horrible sickness.
- Charlene Milligan
March 12, 2008 10:18 p.m.
Thank you so much for clarifying this issue!
- Laurie Pepper
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16 comments posted