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  • Alzheimer's blog

  • Feb. 12, 2008

    Early-onset Alzheimer's: There is help

    By Angela Lunde

81 comments posted

Alzheimer's Caregiving

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Recently, there has been some discussion about early-onset Alzheimer's disease. Having early-onset Alzheimer's disease means that symptoms develop before the age of 65. Of all the people with Alzheimer's disease, only 5 percent to 10 percent develop symptoms before age 65.

Early-onset Alzheimer's has been known to develop between ages 30 and 40, but that's exceedingly rare. It is more common to see someone in their 50s who has the disease. I have had the opportunity to meet many individuals with early-onset Alzheimer's disease and their care partners. Their stories are different than those who have symptoms in their 70, 80 and 90's.

Often persons with early-onset Alzheimer's disease are actively in the work force at the time of their diagnosis, in fact, it is often 'on the job' where clues surface that something is wrong. Those impacted with early Alzheimer's disease and their care partners may experience financial challenges, changes in their relationship, as well as isolation from friends and activities. They may still have children living at home and face an uncertain future.

Yet, for those recently diagnosed with early-onset Alzheimer's disease, there is life after a diagnosis! With a diagnosis of early-onset Alzheimer's there is now some peace of mind in knowing the cause of the changes in thinking and performance.

There are medications that can slow the progression, information is available from groups such as the Alzheimer's Association (check out Safe Return) and there are support groups across the country for persons with the disease and their care partners.

81 comments posted

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  • January 19, 2013 10:01 p.m.

    This disease just like all others will never have a cure. Drug companies don't give cures as they no longer will be able to sell their drugs. The Government does nothing to stop this and you can diet all you want but my sister is dying of this and there will never be a cure.

    - Nora

  • November 19, 2012 5:14 p.m.

    Hi, my father has been diagnosed with Dementia. as of last month he was prescribed Remeron and Seroquel along with sleeping aid and vitamins. I have seen my father's mental state decline very rapidly. I am comfused and worried that within the last month he was able to have a conversation and now all he wants to do is stay in bed and has no idea what to do. he gets up and repeats the same things over and over.it seems that my dad is a Zombie, he cannot hold a conversation and this progressed way to quick. can anyone out there give me some feedback? thanks....

    - Jessie

  • November 2, 2012 1:55 p.m.

    My maternal grandmother and my mother and two of her sisters by my grandmother's first husband all suffered from alzheimer's. I am 65 and have seen the signs of dementia during the past three years. I had to retire from my teaching job because of it. I live near NIH in Maryland- where can I get help

    - suzette

  • February 9, 2012 1:27 p.m.

    I have just turned 40, but in the last two years I have been struggling with remembering words and finishing sentences. It's driving my children crazy. I forget things all the time and my friends are noticing as well. My father was diagnosed with EOAD in his 50s and he passed away at 64. My grandmother also died of Alzheimer's, but was in her 70s. I am just wondering if I should be concerned at this age or just wait a little longer before I approach the doctor.

    - Sarah

  • January 31, 2012 4:58 p.m.

    My wife is in her 9th year after being diagnosed with EOAD at age 49. I would like to chat with Priscilla and Donna about the experiences we have had.

    - Steve

  • January 19, 2012 9:32 a.m.

    I will be tested soon for EOAD. I would very much like to chat with someone who has been recently diagnosed with EOAD. To hear from them what they see changing, how they feel, etc. would be very consoling to me. My dad had AD, however, there were no tests to determine EOAD or even AD back then. I believe I may have inherited the gene. My adult children believe I have EOAD. I'm thinking I may have it.

    - Priscilla

  • November 7, 2011 7:44 a.m.

    Question: I am 56. I forget names, words, technical topics related to my work. I am a football fan... can't remember the names of players. Seems my memory of childhood, etc., is better than things I experienced in the last 10 years. This has become very noticeable. Should I be concerned?

    - Tim

  • September 8, 2011 10:03 a.m.

    I have many family members that have suffered from some form of mental illness. My mother suffered from moderate to severe dementia the last 5 years, and recently died in May. My sister who is 59 has EOAD and now needs full-time care. The best advice I can give is to love the person with the disease and try not to be too hard on caregivers, including yourself. Also, you need to get the right level of care for the person who is sick. Once you do that, things will get better. If you try to do it all yourself, you will burn out in a matter of weeks or months. Talk to a doctor or see a social worker to sort through all the issues that need to be handled. And also, dementia and AD does take away your loved one, but not everything changes. Their personality is still there, and they do know you are helping them even if they can't acknowledge it. Pray some new meds become available to help AD. Personally, I have learned a lot going through these medical issues with my family. And, if it does happen to me, which is likely, I am not afraid for myself. I plan to enjoy the life I have today instead.

    - Chris

  • August 24, 2011 1:36 p.m.

    My husband is 53 years old was diganoise at 51 with early on set alzheimers. Currenty taking aricept.Is going down fast.Working has become harder and is looking into disability throug his work. I am scared beyond words.

    - Donna

  • July 3, 2011 11:29 p.m.

    My husband was diagnosed at age 58 with MCI and he complained of problems seeing. Took him to a specialist and he said he had homonymous hemiamposia. He also had many changes to his eyesight and he did not need new glasses. It was his brain affecting his eyes.A few months ago I read a blog about EOAD and I gasped. The woman was talking about my husbands symptoms to a tee. Her husband was diagnosed with Peripheral Artery Disease. No one EVER mentioned that. It is a rare form of Alzheimers. It was found on a UK site NOT on our Alz site. I wonder how many people have this form of Alz. that do not know about it. He had all the mild symptoms of Alz but complained all the time that there was something wrong with his eyes. He went from a impatient man to a happy smiling easy going fellow which I am thankful for. He now has progressed to stage 6 or 7 of Alz. He also has balance problems and his muscles are rigid. I wish I could find a site that deals with this issue and others who might have been diagnosed with this.It has been a long haul and if I did not have fibromyalgia it would be easier to deal with. I think. Pat

    - Pat

  • March 2, 2011 10:57 a.m.

    My mother in law is 77yrs old and has lived with us the past two yrs. She battles Alzheimers which is worsening quickly now its in the more advance stage. My father in law ( died early r/t cancer ) mother and sister both were in nursing home and died r/t alzheimers. To my knowledge all of these folks had the older age type alzheimers. My husband is 49 and has battle some problems the past year and a half. Memory, lack of motivation and went from being a kind gentle person to easily agitated and irritated. Neurologist done map testing ( he done good however he is very smart man ), lab work and tested for depression. All seemed ok. MRI showed minimal changes r/t vascular ischemia which they said was normal. Examples of forgetffullness is going to seminar in New York. Forgot to make room reservations and never registered for seminar. Many other examples however he believes its stress. Even his boss has noticed him forgetting issues he showed remember. Neurologist said since there were four kids born to his mother and father ( each with alzheimers in family ) that 1 of their children will have alzheimers. Is this true? And could it be the one called early alzlheimers?

    - Luann

  • February 8, 2011 9:05 p.m.

    I am a nurse for 9 years and was a hospice nurse for 4 years. My mother has early onslet alzhemiers disease. I know what my mother is going to experience. My worst memory of a patient was with alzemiers disease. She slowly rotted away from the inside out. The smell of rotting flesh burns in my nose. I am scared, because I see what the future holds. I am scared of loosing my mother. My bestfriend. I am scared that my children will not be able to grow up with thier grandmother. I am scared of loosing my bestfriend. I am scared of getting the disease myself and passing this on to my children. I am scared of causing my children to go through the same pain that I feel. I am only 30 years old and I have already started to loose my mother. I keep saying I rather have 30 years with my mother than 100 years with most other moms. The pain remains. Does any one have and advice with coping with this horrible disease.

    - Bailey

  • October 5, 2010 10:57 a.m.

    Hi, sorry about my bad english. I would like to know more about the behavior. My husband is 59 and has Alzheimer since 2008. He is not longer the same, and treat me as a nothing else. He told me he has another woman who he loves now, and can not be with me, didan't sleep in the same bad, and rejects me a lot. Is this normal?

    - Sueli

  • September 25, 2010 8:36 a.m.

    I'd like to say something about genetic inheritance. If one parent has a gene and you inherit it, that's still only 50% of your genetic inheritance for that gene. That's because you also get 50% of your genetic info for each gene from your other parent. Thus, just because one parent suffers from a particular ailment does not necessarily mean that you will. It increases your risk but is not the same as dooming you inevitably. It works the same way if you get sick and have kids. You only give your kids half their genetic material. The other half comes from their other parent. My other comment has to do with time. When we see a parent suffer and pass on from some dread disease, it is natural to feel scared for our own future. But science and medicine continue to make progress. A lot is known now that was not known 10 years ago. 10 years from now they will know more. That's the bright spot in the dark night of dealing with Alzheimer's. It's a slow disease. So hang in there. Time may be on your side. Research is continuing all the time -- on what causes this, on how to delay it, how to stop it, how to cure it.

    - Diana

  • September 3, 2010 4:12 p.m.

    How do I get medical professionals to take me seriously when I ask about early onset A? I'm only 57 and my primary care dr just wants to chalk my complaints up to age.

    - sharon

  • April 23, 2010 1:33 a.m.

    My mother in-law died of early onset AD. I am reading Still Alice and I am terrified for my children. I can't stop crying - I can't imagine hearing that they may carry a gene that would mean they would also get this. They are only 6 and 3. I am 40 - I won't be able to help them. Do they have a 50% chance of developing early onset AD even if my husband does not have the gene? How should one prepare?

    - jennifer

  • April 14, 2010 9:58 p.m.

    I didn't read all the comments, but NO WHERE did I see anyone talk about treating the toxic cause.??? How many still drink soda out of cans and/or plastic? How many cook with teflon? How many cook in aluminum? How many are detoxing the heavy metals we get slammed with daily> How many are taking the right supplements? What kind of toxic laundry soaps and detergents do you use? How many use toxic hair colors? How many paint their homes with toxic paint and varnishes? Sorry folks but I am 66 yrs old and began the clean up journey over 15 years ago!! Not easy, but I did it as I didn't want the effects of alzheimers? Were you aware that their is Lyme Alzheimers? You don't have to have tick bites to get Lyme disease. Lyme is endemic world-wide and it must be addressed. How many still drink the diet soda crap with Aspartame, Splenda, Fructose, Corn Syrup, etc., etc., etc. etc. How many eat NON-GMO foods and are swallowing the pesticides and herbicides DAILY?? Putting band-aids on problems we have allowed in OUR TOXIC WORLD will continue to kill you at early age. There is no excuse, CLEAN UP YOUR ENVIRONMENT, HOMES, FOOD AND LIVES. Sorry to be so toughm but it is up to YOU, the consumer, to stop the toxins in our foods!! How many buy water in plastic water bottles, THEN re-use them.. Linda

    - Linda

  • April 14, 2010 1:47 p.m.

    My mom died in Feb 2010 at age 81 after her AD diagnosis 15 years ago. We didn't know how it rips out your heart to watch someone you love deteriorate - she stopped cooking, cleaning - she even got violent - throwing things and cursing - these things she never, never did -- she was a caring, loving and giving person -- Before Mimanda was introduced in the States, it was approved in the UK and so we sent the prescription overseas and gave the drug to my mom 2 years before it was approved in the States. It only helped for so long and then the family watched as she slowly reach the Advanced stages, feeling helpless. We never even considered putting her in a home, my siblings and my dad cared for her and she died in my sister's home in San Antonio comfortably and with dignity, even though she had been gone already a long time. I am proud that we were able to care for her at home. I wouldn't wish this disease on my worst enemy - It robbed my mom of her life and my parents never enjoyed the "golden years." I miss her so much it hurts - When I hear all the things you should do to prevent the disease, like read and eat healthy, it makes me sick -- my mom spoke 2 languages fluently, she read and studied and was like a geography book when we traveled and she still go this disgusting disease. All I can say is pray and be patient and seek out and use any help you can find. So right after my mom's death, my dad is diagnosed with Lewie Body Syndrome, a form of Dementia --G

    - Norma

  • April 14, 2010 10:55 a.m.

    my husband died at age 54. He had been diagnosed 5 years earlier with Alzheimer's disease. Looking back, he had signs of early-onset alzheimer's disease between the ages of 25-40. At the time he was diagnosed, no one had ever heard of Alzheimer's disease. He was diagnosed in the '70's.

    - Margaret

  • March 13, 2010 2:16 p.m.

    my wife, soon to be 65 just got the reults of her brain scan and it shows loss of brain tissue and possible small strokes. she goes to the gym everyday and we walk evryday also. but she forgets and gets confused more and more. we will see the doctor soon and hope, if nothing else, it's mild alzheimers. i'm scared to death. she's taking it a lot better then me.

    - ron

  • January 29, 2010 8:30 a.m.

    Kate, There is an early-onset alzheimer's disease, but it sounds like your husband needs to see a specialist.

    - N/A

  • January 29, 2010 8:26 a.m.

    Tom, I am sorry to hear about your situation as it was not handled correctly. You should do a little research on the internet to see what kind of help is available in your area. Try contacting the Alzheimer's Association . There are adult day centers (Active Day, etc.) that can pick up your wife for daily activities. There are also in-home care services available, but you really need to check with your insurance and find a good doctor to help you. I wish you the best.

    - Ja

  • November 30, 2009 12:50 a.m.

    I have just finished reading all of the "posts". I was hoping to find some helpful pointers of some kind from somebody other than "posters".I saw nothing but stories about the problems of Alzheimers and its affects on the patient and the caregiver. Exactly what is the point of this site? My wife , aged 69 was recently diagnosed with this dreaded disease and sent home. that's it just sent home , from Cleveland Clinic. nobody talked to her nor spent much time with me discussing "our" problem. I did not create a ruckus nor complain about anything. I am sure the testing was accurate. I was somewhat shocked upon our return home to find a message on our answering machine that the doctor would be calling me to discuss my wifes condition. that was over 2 months ago, see no sense in calling him back. do you? this site seems about as informative. Just a bunch of comments from desparate people, as I am also. I am sure my wife will outlast me, then what? Yes, we have LTC Ins. so what? and when that runs out, then what?

    - Tom

  • October 1, 2009 12:29 p.m.

    Is there such a thing as early-early Alzheimer's? My husband and I are 61 and got married 6 years ago. Since then I have noticed many cognitive impairments, e.g. inability to plan, anticipate, doesn't finish tasks, leaves things all over the house, up and down the stairs all day, memory loss, etc. My friends say "that's just men". I just say that his brain is just not working right. Yesterday our naturopath identified that he has brain inflammation and he will be starting on brain nutrition and supplements as well as an exercise program. Any advice?

    - kate

  • September 2, 2009 12:11 p.m.

    My mother was struck with the disease in 1996. It broke my heart, and my loving dad kept at home and took care of her. He died in 2000 with a massive heart attack. I think it was from the stress and depression. I helped him care for her and work a full time job. When he died my 2 sisters and I took care of her until her death in April 2009. I miss her so much and my dad. Anyone who has dealt with this dreaded disease has my very loving smpathy. I hope and pray that there will be a cure some day. I am so scared that myself or other family members will get this. The only thing that kept my depression down some which was not much was the happiness of being able to take care of her and be with her. I will never get over the agony and pain that I've been through from this and miss my mother so much each day that she is not here.

    - Ann

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