Alzheimer's disease

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• March 30, 2013 12:02 p.m.

  I totally agree with this letter! Why is it nowadays that most doctors seem so fixated on entering information in their computers, that they not only not really hear you, but don't look at you? When I was worried about my memory loss, I'm 65, and other conditions, he did a thyroid test, and it was OK, but then the concern stopped there! Doctors need to LISTEN to patients , as well as their caregivers, who else can help you? It's sad that in my lifetime, the computer is taking over feelings..

  - Joni

• July 18, 2012 10:49 a.m.

  for nick: your wife is in her daily life. So she does automaticly her works. But she does this only to think for her works. First she must drink enough.She must discribes the thing she helds in her hands. And in her own thinking she must see exactly for herself the things. Please speak with her not for remember. The words are not the way to became better brain. Only for the yet time doing with things. And so the informations for her brain (input) will be more and the output also. Because the biochemical systems in the brain go faster and better.

  - susangab.

• June 15, 2012 4:16 p.m.

  my wife 84 seems to be getting worse and DR. said he can do nothing for her, Please suggest something. Iam at wits end

  - nick

• June 14, 2012 7:50 p.m.

  I went thru the same thing with my husband and our family doctor. I told him about how he was losing things and he told me we all forget things as we get older. I went to my neurologist who before I finished saying anything started ordering all kinds of tests. My husband suffers from early onset ALZ too. It's a terrible thing to watch him decline. His mini-mental score is now 2. Just a few short years ago, it was 27! I personally just don't know how to deal with all the changes.

  - Nancy

• November 3, 2011 6:25 p.m.

  I wholeheartedly agree with Allan. My sister is also in the early stages of Alzheimer disease, although she was diagnosed almost five years ago. We took her to a "Day Program" and registered her for pick up within the next week. She went the first day but found that the others in the group were away worse off than she was and the activities were not geared to someone in her condition whatsoever. We know that she needs to get out and be among people, also getting exercise every day to maintain her health as long as possible, but simply can't find a suitable program for her. I agree that a group designed for these people is sadly lacking.

  - Honda

• October 20, 2011 8:50 a.m.

  Create article - thanks so much. My adoptive Mom has Alzheimer's but she is 85. As a babyboomer I am concerned about exactly what you discussed. I agree that the medical profession needs to validate the first hand observations (isn't that empirical evidence?!) of those closest to the person. My Mom had those same memory issues several years before being diagnosed - my Dad's death seemed to send her over the edge. Thanks again. I will share your ideas.

  - Jude

• September 24, 2011 12:11 p.m.

  I agree 100% early stages need to be taken serious.And acted upon

  - No name given

• June 16, 2011 7:43 p.m.

  Your concern and comments are so valid. My company operates 2 assisted living facilities in the south with dedicated Alzheimer's care units on site, as well as my Mother has lived 11 years with alzherimers diagnosis. Research is critical, Search and read a new york times article from justice Sandra day O Connor About need for more research. We must become much more effective about Sharing this need and change this! Day care and help is very important !! Be prepared for a long journey !! It's a new chapter of life.

  - Denny

• May 17, 2011 10:42 p.m.

  there is the opposite problem as well when a spouse is depressed or experiencing other medical issues and reports a very exaggerated version of reality. protocols should be developed for the informant and number of informants.

  - Lisa

• May 2, 2011 11:21 a.m.

  I absolutley agree with Allan that doctors do not listen to family members about early signs of Alzheimer's. I just spent the last 5 years trying to convince my mother's internist and neurologist (!) that my mother's memory problems were not "normal aging" as they kept saying but Alzheimer's disease. Well, the last neuropsych exam proved I was right all along. Had they listened to me she could have started medications sooner and not declined so badly. I am sick of regular docotors' ignorance of the signs of early AD. To top it off, my mother's neurologist is now exhibiting symptoms of AD himself (his mother had it)! Who in the world should I notify about this and why aren't the people he practices with taking action on this? (He misread the date on a neuropsych test and took her off of her medication for a year among other things!)

  - Amy

• April 24, 2011 2:22 a.m.

  Jim-I understand what you mean. My mother is very stubborn. After she fell we kept her at our homes for close to 6 months before she insisted on going home (alone). She rehabilitated nicely by that point. She promised us all kinds of safety precautions and hired help. Never happened. After a month she obviously needed to be removed from the home (self neglect)however, police, ambulance, etc interviewed her and she was "fine". We knew she was delusional. Fortunately(?) she finally fell which required EMS. Check into Adult Protective Services (APS) run by the state if available. They may be able to help you. My prayers are with you.

  - chris

• March 24, 2011 10:28 p.m.

  Your sooo right I cant get any help from my moms doctor and she will not let me know her medical info. There is one problem after another with her she lives by herself I work and cannot help her all the time. Until something bad happends looks like I cannot get any help.

  - Jim

• November 27, 2010 3:19 p.m.

  The last of my comment didn't post. My wife showed symptoms of Stage 3 Alzheimer's wihtin no more than 2 weeks after falling on Ice. One of her best friends from childhood recently visited us for a weekend and had an almost identical experience with her mother. She had fallen on Ice and broke both wrists, and less than two weeks later had severe symptoms of Dementia or Alzheimer's. My wife also seems to be improving slightly with the new experimental drug. I believe that she was on a placebo, because her tests were pretty much "level" for the first 5 months. The placebo study group (20 percent of the patients in the study) are given real medicine at the halfway point and until the conclusion of the study. On her last two doctor visits, the nurses have told me that she has been able to do tasks that she has never done before. My wife had an accidental death / disability policy which covered an accident at work. She is unable to work anymore and receives a small social security check each month. I am needing to file a claim on this policy, but I need some evidence of a correlation between her fall and the Dementia symptoms. She had no symptoms whatsoever prior to the fall, and there is no family history of Alzheimer's. From everything I've read, I don't think anyone develops Alzheimer's and shows signs of Stage 3 progression in a 30 day period. I believe that if she had a progression to stage 3 in 30 days, she would be much worse now, which she is not. HELP!!!

  - kelly

• November 27, 2010 3:05 p.m.

  Your statement that doctors need to listen to spouses and caregivers is absolutley correct. My wife is 57, and has been diagnosed with early onset Alzheimer's. She was working as a teaching assistant at a school until 18 months ago. In January of 2009, she fell on an Icy sidewalk at school, broke her wrist,and hurt her hip, shoulder and neck> I believe she hit her head on the icy sidewalk also, but no one saw her fall. Within two weeks (and may have been sooner) she was exhibiting signs of memory loss, and began having difficulty at home performing routine tasks such as operating a coffee maker, doing laundry, following recipies, etc. After almost a year and following a CT scan (4 months after the fall), an MRI and an EEG (6 mos after) and a PET Scan (11 mos after falling) she was diagnosed with Alzheimer's Disease. Within 5 weeks of the fall, we took her to a doctor one evening when she was having severe problems. The doctor performed a battery of mental tests for about an hour, and she had symptoms at that time similar to a Stage 3 Alzheimer's patient. Every doctor who has seen my wife discounts any link between the fall and the "Alzheimer's". At this point, although she is in a clinical trial for a new Alzheimer's drug, I'm not convinced that she has Alzheimer's and not severe Dementia, because, after beginning to take Pristiq a little over a year ago, she showed some improvement and hasn't worsened. Has Anyone else experienced Alzheimer symptoms IMMEDIATLEY a

  - Kelly

• March 24, 2010 10:23 p.m.

  To Lynn- my mom also developed a tremor about 6-7 years ago which has gotten progressively worse. I cannot find any info on the association. She is 63. I was glad to see your post!

  - Amber

• March 24, 2010 10:19 p.m.

  Allan, thank you for sharing your story. You totally described what our experience has been. My mom finally went in to see a neurologist a year ago at age 62. She has had progressive symptoms for several years prior. Her Dr. did all the usual testing including an MRI. He told me nothing looked unusual and her symptoms were due to stress from the divorce to my father. We (my sisters and I) knew otherwise but now my mom had ammo: "I told you nothing was wrong." Although she had been fired from being a practicing attorney because she couldn't keep up during court proceedings and would forget important details during cases. (I spoke to the judge who said she needed to quit practicing.) Over the past year she has gone steadily downhill. I found out today that an MRI is used to RULE OUT other possibilities for the symptoms and that most AD patients have fine MRI's. This Dr. is totally wrong on how to diagnose AD and the role an MRI has. Not only have we lost a year in possible treatment, but my mom is convinced more than ever that nothing is wrong because a neurologist told her so. This guy did his graduate work at the mayo clinic and on their website it says "In most clinical settings, brain imaging should be used only to rule out such things as hemorrhages, brain tumors or strokes." I also heard this from a nurse today who works in an Aging & Alzheimer center in our state.

  - Amber

• March 2, 2010 4:19 p.m.

  I totally agree. I am a retired physician, diagnosed myself having early stage AD. My father had it before he died of stroke. We definitely need more attention and organized effort to slow or stop it early on before it is too late. Thank you!

  - BIRU

• February 27, 2010 11:39 a.m.

  To Karen -- I am in a very similar situation. My almost 82 yr old husband has been steadily declining in cognitive, reasoning abilities and memory loss over the past ten years. We reached a point where I had to take some sort of legal action. My husband had never made a will or a trust. This left us with a very risky economic situation for us and our six children and grandchildren. We own property as well as investment accounts. My husband, as yours, is in denial of his diminished capacities and refuses to see a physician (even though he is a retired health care professional himself and we have children who are also in this profession.) With the support of our children I sought advice from an attorney who came highly recommended by a long-time attorney friend. I ended up having to petition the court for guardianship. This has enabled me to form a trust for our family and help preserve our assets. I am also better able to control our budget since my husband started to make purchases which were not only foolish, but some were dangerous for him. Although he was examined by a psychiatrist and two psychologists for the guardianship process, he still is in denial and refuses to see a physician for diagnosis and any possible treatment. There has been a downside to my actions, of course. He is very angry about what I have had to do and obviously does not understand any of it. If I try to explain anything to him, he gets confused and then angry. Good luck!

  - Maureen

• February 6, 2010 7:25 a.m.

  Michelle, based upon contacts I have made in many states, I would have to disagree with you that most chapters of the Alz. Assoc. offer at least some resources and services for those in early stages. I have discovered that it is the rare chapter that does this. Where I live, to serve more than 55,000 people with AD, according to the Alz. Assoc., the local Alz. Assoc. provides more than 30 groups for those in moderate or advanced stages ... caregiver support groups, daytime activity programs, etc. ... but zero programs for PWAD in early stages or with EOAD and only 1 caregiver group for EOAD ... and that one only meets once a month, and at night. My point is simply that, in my opinion, this is a very poor allocation of existing resources. I have been prodding my local chapter to start new groups, and I am told that they are working on starting one. (According to their website they already have one ... but that is simply not true because when my wife and I went to that supposed 'meeting' we were told that they meant that they were hoping to eventually begin such a group!!) You are correct in that I and all involved with AD must work hard to advocate for MORE resouces. My point is simply to urge the The Alz. Assoc. to better utilize their CURRENT resources to better meet the needs of those in early stages, or with EOAD, and their spouses and caregivers!

  - Allan

• February 5, 2010 3:14 p.m.

  Allan, You are right. Currently no organization provides enough programs for people with early dementia. However, the Alzheimer's Association has taken leadership in this area and most chapters offer at least some resources and services for people living with early Alzheimer's. Is it enough? No way. Do we need more? Absolutely. If you agree with me, I encourage you to take a step in this direction by contacting your representatives in congress and encouraging them to: - allocate more money to Alzheimer's disease research - provide reimbursement under medicare for dementia screening, diagnosis, and education / intervention. I'd also encourage you to contact your local Alzheimer's Association chapter and offer to help them develop programs that meet the needs of those with early dementia and help them find the resources to do the work. As Margaret Mead said, never doubt that "a small group of thoughtful people could change the world. Indeed, it's the only thing that ever has." We all have been impacted by this disease, and have witnessed first hand what happens when it is not diagnosed and treated early. We can and must be the ones to change this - for our spouses, our parents, our brothers, our children and ourselves.

  - Michelle

• February 3, 2010 8:01 a.m.

  Beth, I appreciate your response but, with all due respect, The Alzheimer's Association is just not presently meeting the needs of those in early stages, or those with EOAD, anywhere near to the degree that it meets the needs of those in more moderate or severe stages. Not even close. I posted a response to Angela Lunde's January 30th column, so I won't repeat myself here. But to say that the Assoication 'recognizes' the importance of those in early stages does not translate into actually providing services for those in early stages ... at least not in any part of this country that I am personally aware of!

  - Allan

• February 2, 2010 3:41 p.m.

  Please accept our sympathies on your wife’s diagnosis. Alzheimer’s is a devastating disease that affects the entire family. With Americans living longer and prevalence of Alzheimer’s soaring, the Alzheimer’s Association shares your concern that this progressive and fatal disease be stopped immediately. While researchers work to find better treatments, the Association strives to support the 5.3 million Americans currently living with Alzheimer’s, including 200,000 under the age of 65, and their 10 million caregivers. Knowing that half of all people with Alzheimer’s are in the early stages, the Association recognizes the importance of this community. Association chapters nationwide offer more than 300 support groups for people with the disease. Now in its 4th year, the Association is pleased to continue its Early-Stage Advisory Group, people living in the early stages of Alzheimer’s who discuss resources for this population. Previous Early-Stage Advisory Groups offered input to the Association’s 10 Warning Signs as part of a campaign to raise awareness of early detection among the public and physicians. The Early-Stage Advisory Group also created Principles of a Dignified Diagnosis, the first statement by people living with the disease on how to improve diagnosis. Finally, information, resources and an online community, including message boards for people with Alzheimer’s, can be found at www.alz.org. The Association also offers a 24/7 toll-free helpline (800-272-3900).

  - Beth

• February 2, 2010 3:29 p.m.

  My husband, age 82, has been exhibiting symptoms of cognitive problems for four years but only recently has he been willing to admit there are area where he is slipping. Even so, he is very resistant to seeing a specialist for evaluation. I have been hoping that is I can persuade him to do so he will be more acceptive of help in those areas (finance for one). Has anyone else had a similar situation? Does a diagnosis make any change in the patient's attitude? Does it ever help make a person more cooperative in their own care?

  - Karen

• February 2, 2010 10:46 a.m.

  My husband is 63 years old. Although he was diagnosed with early Alzheimer's only about three months ago, I'm sure he had symptoms for at least one year prior to the diagnosis. I am very worried and frightened for him. I just keep hoping that I will be able to care for him in a manner so that he will not lose his dignity. Has anyone had experiences with tremors that are becoming increasingly worse? He is on Aricept and his cognitive thinking skills have improved, as well as overall symptoms, but the physical aspect ... extreme tremors worries me. I really do not know what to expect next. Can anyone help me out here?

  - Lynn

• January 31, 2010 1:26 p.m.

  My husband has had AD, I believe, since he was 49, though he wasn't formally diagnosed until the age of 52. Since that time, we've had neuropsychological testing each year (clarification for employer) and he has been unemployed now since he was 54. Fortunately, we received benefits from social security and UNUM (thru employer), so we're okay financially for now. I just wish there were services for sociable people like my husband where he could get together with others of like age and illnesses. As expressed in the newsletter posted on 1/29, more services in general need to be available to the early-onset people; it seems that everything is geared to the elderly with AD. If anyone has any suggestions, I would love to hear them. Currently, we are 56, and I teach while my husband stays at home. Even though our son is available - off and on - I would like to see my husband busy during the day. Thanks. Patti

  - Patti