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Alzheimer's
With Mayo Clinic health education outreach coordinator Angela Lunde
Early-onset Alzheimer's: There is help
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.
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My husband was diagnosed with EOAD at age 55. I have read everything online about it. That is not what I wanted to comment on though. Has anyone else read "Still Alice". It is a fiction novel, but it is so on the money for my husband. I wanted him to read it because he says that no one understands what it is like. You can get a real good idea of what they are feeling by this book. I may be behind and everyone already knows of it. jm29
For Kenj,
Sorry to not post anything for a couple of weeks but I finally left the house and went to see my Grand daughters. Ken you said #2 was your questions "keep her happy". I have a couple of questions? Do she still talk and respond to music and the TV? I know that sounds simple but we never ever let the house go quite. We kept musice on that she enjoyed over the years. We put on the TV on shows she watched. She was very active politically and liked Fox News. We also made eating and drinking easy for her. We got rid of the glass and cups and went to a plastic drink bootle. We found the best way to feed her was with baby spoons and bottles used by resturants that squirt ketchup. You can find them at any kitchen store. Also, put her in depends sooner than later. It will make your and her life a lot easier in the long run. Dress her in loose fitting clothes like sweat pants and large tee shirts that are easy to get on and off. But a rasied seat for the bath room so it is easy to sit her down and it will not strain her. Do not try and put shoes on her keep in in socks. Take up all throw rugs so she does not fall. I am running out of space let me know if this helps.
NosnarfU9
Debbie, I know how frustrated you are. I lived many years just getting worse & complaining to my doctors. I had breast CA in 1999 and we thought it was from the chemo, even though I had the problems before then. I was diagnosed with Fibromyalgia which has memory confusions. Then came serious problems with my job... Not meeting goals and deadlines. Doctors always said it was stress, but when I forgot to get on an airplane for a mandatory budget meeting...I totally lost it. I did not even remember a meeting. After that I was put on a "Performance Evaluation Warning". Basically, they would have the paperwork in place to dismiss me. Debbie, Please Find a doctor that listens. Even though it took so long for the doctors to officially diagnosis and put me on Aricept and Risperdal, they cared about me & always listened. I have female doctors. Doctors never want to label you with that diagnosis. I am a textbook early onset case. Over the years I had extremely stressful jobs. I was a very successful professional woman. I am now 56 and on medical disability for 6 months,& will then file for Social Security. I am scared also and looking for others to talk and share. I will tell you, there is no place I have found that is for the early onset "PATIENT". Most are for the caregivers. And God Bless them they need it after the early stages. FACE YOUR FEAR! Go back to the doctor. Find one specializing in Alzheimers. Reach out. Your fear is the unknown. I would
I am interested in the best places for information. I have not been to a doctor but I feel this is what is going on with me. I can't remember peoples names that I have known for years, I get lost, get very confused, have to keep notes for everything, I can't spell well anymore...
I am affraid to go to the Dr. because I am affraid of the diagnoses. I am 42 and this has been going on for over a year. The Dr. told me last year that it was just stress but the stress has gone away and the memory has gotten worse. I have been looking into long term care insurance because I am married and have two young children. If anyone has any knowledge that would help me I would be so grateful.
Debbie
Nosnarfu9 - I'm all ears. My wife was diagnosed at 51 easily 2-1/2 years after I knew that was the problem. You are right, there is no help out there. My son and I are doing everything we can to keep her 1) safe and 2) happy. #2 is the problem. Am open to suggestions.
Thx - Ken J
Hi All,
My wife died from early on set on December 8, 2007. There is no help out there for us. My son helped me take care of my wife for the last five years and he went to several meeting. My wife was only 50 when she was diganossed with ealz. We did some many things that no one else thought of. The Hospic said that they have never seen two men take care of a women like we did. I am very proud of what we did. Do not look for help for anyone for early AL. It is not there. I will try and help you with things I used to make my wifes life better as she died.
There are a lot of things you can do to make your life and their's easier.
Nosnarfu9
Oh my goodness, I in no way meant to come across as angry about the blog content. I am thrilled that there are places to discuss, share, vent, cry out for help for the caregiver. I know it must be incredibly painful. I am hurting to know that I at some point will be a source of pain. I doubt that I will know or care when that time comes. I don't know if I will or not. I have been told to go to an elder attorney, get my will updated and make my personal choices about end of like care etc. But, here it is. I am frustrated that NOWHERE, and believe me I have looked, have I found "my" special community to belong to. Why is this? Because, I think my people are embarrassed about their diagnosis. They don't want others to know they have this problem. The local Alzheimer's Assn (San Antonio, Tx) has an early onset support group for pts. once a month. I called and was told 1 man came last month, didn't know if he would be back but they would be happy to call him to see. I did go to a another group they suggested. There were 3 wonderful people there. 2 older caregivers whose spouses were deceased (they were like the lay facilitors from the church that sponsors the group and the volunteer therapist facilitor. In time, I hope my family will participate and reap the rewards of a group like this. But, where is my support group for now? I guess I am going to have to start it. I am not the normal face of Alzheimer's yet. I need someone I can relate to now. Thanks guys. Can anyone
Lynn - Your diagnosis is a travesty, as are all. Your anger toward the content of this blog surprises me though. These are folks who are caregivers and in need of any kind of support and ideas they can get. Like raising children, we're kind of flying by the seat of our pants and it isn't alot of fun for us. I don't believe any of the dialogue is intended to be demeaning or suggest "giving up".
By your writing, it appears you are still in sound condition. I might suggest the
following for support that might be a better fit. It is the Dimentia Advocacy and Support Network International.
dasninternational.org
HI Lynn, I just want to say that I am so sorry about your diganosis. I myself wish I would have talked to my Dad about what was happening to him. I wish I knew more how he was feeling. I wish I would have started learning all about this disease as soon as my Dad was diagnosed so that I could have shared all his changes that he has gone through. My only suggestion to you Lynn is that you need to talk to your family, your children. Tell them how you feel and what your feeling. Tell them to please research this disease so they no better as to what changes you will eventually be going through. I regret not learning about all this earlier. I just assumed what I saw in the movies was really how alzheimer was. ( I was so wrong ) anyway Lynn good luck with everything and be strong. Just keep your family in YOUR loop. I know my comment wasn't the best but from what I have been reading there are so many loving and caring people out there that are and willing to share. keep your chin up :)
How sad this is. I am 56 & "finally" diagnosed with EOAD. I am looking for positive affirmations and direction on how to deal with this self-esteem robbing disease and all I have found here is info from wonderful loving caregivers about diapers and how sad they feel to see their loved ones so empty. Please, share with me some things to help me live as fully as I can. In 45 days I have gone from diagnosis to disability. I no longer am working at my stressful dntal practice OM job, but I have answers why I was having so many problems. I was on the verge of losing my job for performance & goal related issues. I was failing the 18 people that I managed as well as the patients. I almost lost my marriage last summer, I had divorced myself from my friends and family, so all I can say is Thank God! At least I know and have the time to emjoy what I have left. This forum has left me angry & feeling why bother. There will be a bad ending & I am going to be a financial an
Hi, My Dad was diagnosed with EOAD 3 years ago. When my Dad and Step Mom told me I just thought, ok, my dad is just going to live and grow old and maybe not rememeber be someday and the life that he had but that he would still look like my dad, still act like my dad but I was so wrong. It has only been 3 years and my Dad can no longer do anything for himself. 3 years ago he was a strong man who weighed 240 pounds and now weighs 104. He doesn't look like my dad, there is nothing. I can see my Dad in his eyes and that is the only thing left of my Dad. I am so upset at myself for being so stupid. I should have read and learned more about EOAD as to know exactly what was going to happen to my Dad so that I could have spent more precious time with him. My step Mom is so wonderful, she loves my Dad so much and will continue to take care of him until she can physically no longer do it. I just can't believe this has happend. I am heart broken.
EOAD can consume you, or you can chosse to make the best of the time that you have left. My wife was diagnosed 7 years ago, at age 53. She and I immediately updated our wills, and had POAs and health care directives drafted. She responded well to Aricept initially, and as a result, we had 5 pretty good years together. Ironically, as a result of by-pass surgery, I was able to take some time away from work, which gave us more time to do some travel while we still could. My wife's response when she heard the diagnosis? "Well, at least I don't have cancer; we have some time!" She was a courageous woman, and determined that we would not be robbed of one single moment unnecessarily. She is still at home with me, although now at the stage where she speaks no more than a couple of words at a time, and needs help with virtually eveything. But she seems happy and content, which is all that I can hope for at this stage.
I find it comforting to care for my mother. She is such a kind and giving indivual at times. We never know "what's around the corner," for any of us. What helps me is to see your comments and knowing I am not the only one in the world doing this. And, also knowing that there will be a time coming soon when no resident of this earth will say, "I am sick."
Wow! I have known something was wrong with my husband for about a year - yesterday we got the official news from the pet scans, psycho-testing, etc. I already knew the diagnosis - as I helped with his Mom whom I love dearly. Trying to get him to go for help has been difficult and yesterday was the worst yet!
Our daughter is about to turn 16 and our son is 13. I have to believe at this point that things will be okay. He surprises me with his calmness. I would be emoting like Mt. Vesuvius. My prayers are with you all... I am trying to remember Jonathan Larsen the talented playwright and genius composer of "Rent" and my friends only sibling. He died at 36 the night before his show opened on Broadway from a cardiac anorism - "No day but, today" .. is wringing in my ears. My husbands first and primary thought as we drove away from the doctor's office was "what am I going to do with the rest of my life?" We need to ask ourselves that question each morni
My wife came dowm with EOAD at 48. She died on December 8th, 2007. My son and I took care of her, at home until the day she died. Please do not be mad it will not help. We were very proud to be able to take care of her at home. There is not much help out there for early on set patients or there care givers. You have to make sure you take care of all your legal documents before he/she cannot. Make sure you get a POA, and a living will as a minimum. Without those two documents you will have major problems. Do not wait too long before you put your loved one in dependes. I did and it made my life much more diffucult than it had to be. Get into Hospice care as soon as his/her health dictates. They can help more than you care ever know until you use them. I have not came to terms with my wife of 40 years death yet. But I know she was better off at home with me and my son than she would have been any where else. Stay Strong. God Bless
I agree with most of the others who have posted a comment - the statement that there is life after diagonosis is nonsense. My husband was diagnosed with EOAD at age 58. He is now 65 and needs 24/7 care. He can no longer speak more than 3 words, is totally incontinent, he can no longer bathe himself, shave, dress himself or feed himself. 6 years ago when my husband was disgnosed with EOAD, we were so hopeful that a cure was on the horizon. All hope is now gone. AD is still an incurable, mind robbing disease.
I am watching my husband rapidly fade away. The future terrifies me. We are isolated and facing financial ruin.
I'm recently diagnosed with EOAD, and speaking for myself, there is no peace of mind in knowing that. I had no idea anything was wrong, until I got fired from my management job. After a psychologist suspected something was wrong, I had neuropsych testing and found that some areas of my functioning had already fallen to extremely low ranges. I'm going to die in a nursing home, a mindless entity wearing diapers. Still looking for the peace in that.
The compound resveratrol has shown interesting neuroprotective properties in clinical trials. Drs. Anderson and Setia reported in a January paper that of 121 with memory loss and early Alzheimers symptoms patients given biotivia Transmax, an extract of red wine used by researchers, 94 showed marked improvement in cholesterol levels, reduced inflammation and improved circulation. Resveratrol works by activating the human Sirt 1,2,3 genes much like caloric restriction does. Sirtris pharma is developing a synthetic version of transmax which it intends to have on the market in five years. In another study by Dr. Sinclair of Harvard published in the journal Nature in November transmax was shown to increase the life span of obese mammals by 31%. This is an exciting area of research and could lead to some revolutionary new preventative strategies and safer less invasive treatments for heart disease. I Dr. Sinclair's study of obese mice he found that those fed resveratrol lived 31% longer and
I am a person who has been living with and challenged by probable early onset Alzheimer's for 18 years, starting at the age of 41. Thankfully through the help of our wonderful neueologist, I have achieved a higher quality of life! I have a hereditary form - along with my older sister- our mother and aunt also had it. He has taught us to look "outside the box" with a whole mind and body approach. Along with the medications (which are an "older" type, because I started before the typical AD drugs were available)we us an integrative approach with nutrition, exercise, and supplements. We avoid any MSG, sugar substitutes, toxins, and add in eggs, protein, nuts, fish, fruits and vegtables. And it is working! I have written a book (www.alzheimersaverted.com) and we have formed a national organization, forMemory:Building Hope in Early Onset Alzheimer's and Related Disease (www.forMemory.org) Feel free to contact us. We do this with support of our doctors and researchers. Wi
My wife presented at age 52, 5 years before the 12th doctor gave us the EOAD diagnosis. Help? What's that? The drugs are near useless, friends and relatives have all but vanished, financial challenges have turned into the good old days and still somehow the caregiver and victim must carry on. The only peace of mind is knowing that yesterday is gone and tomorrow will likely be worse than today. I look into my wife's beautiful blue eyes that danced with joy and see the frustration of trying to dress herself, trying speak a three word sentence clearly, trying to read a child's book, or simply feeding herself without making a mess. Her biggest fear? She's afraid that I will get tired doing so much for her. I keep saying that I never give up on her no matter what. I read every article like this hoping for news of a possible breakthrough. It's just more of the same. Tell us about new drugs that the FDA won't take a decade to approve. It's a fatal disease and it's time to stop it.
My wife has EOAD and the drugs did a lot less for her then the older folks and her progression was very fast. She hasn't been able to talk for over two years and is in excellent health otherwise. started at age 58 and now 65 with no life quality.
Most diagnosed with EOAD (now also called Younger Onset Alzheimer’s) have a parent who also had EOAD. They have been living in fear of one day having the diagnosis. The diagnosis is confirmation of their worst fear.
What is so helpful about that? Life after a diagnosis? What life? What peace of mind? Peace of mind in knowing that you have an incurable disease? The title of your article makes it sound like there are some new findings or something like that. There is no more help for an early onset than if you were diagnosed at a later age. I don't get it.
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