Alzheimer's disease

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• November 27, 2012 5:41 a.m.

  to Courtney: the social life is an other thing then in Your life. Because it is in the remember time from the human with Alzheimer desease. So we have to do all the helpness like in this time. But the daily life is to do from the human with Alzheimer desease, if he can do it. It is training for his brain. So we are only in helpness. These thoughts are the right way. I wrote a book Rediscover Recovery. I am a caregiver for long time.

  - Susanngab

• November 17, 2012 3:14 a.m.

  What are your thoughts on the use of Alz. in pop culture and media? I'm currently working on a short film with a colleague about Alzheimer's, inspired by his mother's fight with the disease. I believe it has been a kind of therapy for him, but I don't want to forget the power of film as an educational and cultural tool. I believe we have a responsibility to tell it how it is, hopefully in an emotionally resonant manner. If you have any particular advice for us, please let me know.

  - Courtney

• September 30, 2012 3:16 p.m.

  If anyone missed the recent posts by Catherine and Carole, I encourage you to read them. There are no better teachers then persons living with the disease. Angela Lunde

  - Angela

• September 26, 2012 2:45 a.m.

  to Abbie, all human they have Alzheimer, or dementia, will not know, that they ar not good. Because they are in shame, frustation, angry, angst and so on. They are not child, children. They are grown up. And a man is a man and a woman a woman in their daily life. So they have to find their own thing.Then their brain becomes more information, it is input. This is in the daily life also more out put.Not what we think they have to do. I am a caregiver for a long time. I wrote a book Rediscover Recovery Practical Reference Training.

  - Susanngab

• September 23, 2012 10:41 p.m.

  To Carole, who is also "dealing" with Cognitive Impairment ..changing to a "greater diagnosis" of one of 7 Dementias.WE can work at keeping our minds active,and creative, some things will not be in our control, but eating the right foods,walking(including yoga for the stress of the situation)exercise, keeping hobbies, keeping calenders,keeping habits,(some days you have to push,like Carole says,but Don't take for granted that we can't accomplish anythng,like my doctor assumed for me, but as Carole relates, we must go forward as long as we can. WE need to educate our families and friends, because our doctors are not.WE need to rid the stigma the many of us that are affected this early in life (myself 60 at onset)have much to offer in this early stage, Our families & friends are the ones who need to help us realize our Capabilities of accomplishments everyday. We are ALL going to die someday, But WE have been Blessed with being given the time to "make amends, make our peace, prepare for the future and then "get on with what living you can" Enjoy the grandchildren, make memories for them, teach them what you know,(I taught both my 12 yr old grandaughters how to sew this summer)I write,and have just started working in a project called Aging ,Dementia and the Faith Community.It is a booklet written by John McFadden,to help us educate the public,our churches & families, a book on "Continuing Our Journey" in Friendship" A ma

  - Catherine

• September 23, 2012 9:14 p.m.

  It's asking too much to expect someone with dementia to call it that (or Alzheimer's). Those of us who are forgetful about names or walk into a room and can't remember why will worry that these are early warning signs -- and maybe they are, but the real thing is a long way down the road. People who really have been diagnosed with dementia are not likely to embrace it and plan for their futures. The hard task is for family members to figure it out even when they wish it would go away. For my spouse the signs were there before the neurologist tested for it. Living a complicated life with deadlines and appointments, driving to unknown spots and participating in reasoned decision-making, or retelling a happening -- those are the real life tests. Early on I learned from my support group leader that arguing was futile, as was telling my spouse that he had dementia and now should just do what I asked! Being the caregiver is a mental challenge in problem solving and an emotional challenge to stay even-tempered. I've learned to say many positive things, repeat and repeat the positive. It's very reassuring and good for both of us and makes the household feel calm and full of love. Yes, Buddhist thinking is one road. I have played many Buddhist CD's to myself before I fell asleep.

  - Ella

• September 23, 2012 8:13 p.m.

  My Mom showed symptoms of dementia 10 years ago.....she always was in denial....it was old age. Her doctor 6 years ago finally agreed something was off and dismissed it as ALZ. That he sees it all the time, prescribed her meds, and said it's to be dealt by family. For ten years my sister and I have been dealing. My mom is currently still at home bed ridden, and for the most part, unresponsive being cared for by my sister, resting out her soon to be final days. My two brothers finally realized the depth of the situation 4 years ago. I know that tons of people don't even know the ALZ is a form of dementia. That there are other kinds! My one regret....not going with my gut feelings on day one and being a better advocate for my mom. What's sad? Not knowing this month is World Alzheimer Month....why doesn't everyone know. This disease cannot afford ignorance and denial by anyone...the medical field, loved ones or the person affected by the disease. Learn what you can, share your experiences.....share,share,share....thank you.

  - Lissa

• September 21, 2012 11:37 p.m.

  It does take courage to break a stigma-any kind of stigma.I would encourage people to use their spiritual resources to develop courage.For me,this courage wells up,by my practice of Nichiren Buddhism spirituality.

  - sanjit

• September 21, 2012 9:38 p.m.

  Shirley, I met Gail Sheehy and I don't have her financial resources. As this is the beginning stages for my husband, I have the time to keep myself involved and busy. But, I am finding it more and more difficult to socialize as a couple. I am neither here - nor there. This blog is helping me understand what might be going on with a person with dementia. I took note of what Carole related. Thank you.

  - Dee

• September 21, 2012 6:52 p.m.

  we do need to speak out about Alzheimers & dementia. my mom had alzheimers & my husband, frontal temporal dementia. this disease needs to be something we all begin to do something about... one step at a time, one word at a time ... reach out, please.

  - kathy

• September 21, 2012 12:54 p.m.

  There is compassionate, professional non-medical help available all over America through a great in-home care company called Comfort Keepers. We have over 550 offices nationwide. I am a caregiver for Comfort Keepers as well as the Community Liaison for my county in Florida. For more information, go to www.comfortkeepers.com or find us in the yellow pages. WE ARE HERE FOR YOU!

  - Nan

• September 21, 2012 11:57 a.m.

  Carole, great letter hang in there...

  - Joek

• September 21, 2012 6:43 a.m.

  I apologize in advance, if this is the wrong place to post this comment or if anyone feels offended by this form of advertising but it was the only way I could think to communicate this news. Vision Localization Systems is launching their new product Keruve 2013, which is aimed to be the world most effective system to protect against the wandering in people with Alzheimer's disease. Please have a look at the press release: www.keruve.com/2013/keruve-2013-protect-wandering-alzheimers_en.pdf I hope you find it interesting.

  - Jonathan

• September 21, 2012 2:20 a.m.

  With respect, I don't think the issue is so much a matter of overcoming stigma but in overcoming the lack of understanding about AD. A better comparison in my view is with Schizophrenia. The average person has a crude understanding of what Schizophrenia is, which colours their view of how patients might be integrated into communities. My mother was diagnosed with Alzheimer's about 3 years ago, after we had to bypass her reluctant GP. We were forced to take her to a walk-in clinic to ask for the appropriate tests. She did not manifest the classic signs of AD. Only recently has her short term memory become an issue (this is often cited as the first sign of AD). But over 5 years previously, her speech was compromised. After her diagnosis (and an MRI) it became clear that her vision, fine motor and higher thinking skills were also involved. What I find frustrating is the conventional approach to AD, as though there is only one way that it may be manifested. And I have come to believe that health care providers show a disturbing lack of insight. My mother can walk circles around a health care provider, but that doesn't mean she is able to cope with the challenges of day to day living. I see that my allotted word count is running out, so 2 points: 1. Most of the assistive technology that is coming on the market does not provide AD patients with real opportunties for independence. 2. Innovation in care is more critical than research on prevention. alzheimerthoughts.wordpress.com

  - Wendy

• September 20, 2012 10:58 p.m.

  I HAVE ALZ'S DISEASE. I AGREE WITH BEING OPEN ABOUT IT AND HAVE SHARED READILY. 6 YEARS AGO THE DR. SAID I HAD MILD COGNITIVE DISEASE AND I BEGAN USING EXELON PATCHES. 2 YEARS AGO, THE DR. SAID IT WAS ALZ'S. AND ADDED NAMENDA. SO FAR, ALTHOUGH I NOTICE MANY CHANGES, I AM FUNCTIONING FAIRLY WELL. I REALLY STRUGGLE, HOWEVER, WITH WELL-MEANING PEOPLE WHO SAY 'YOU ARE DOING SO WELL, ONE WOULD NEVER KNOW ANYTHING IS WRONG' OR 'WE HAVE CHATTED FOR AN HOUR NOW AND YOU MAKE PERFECTLY GOOD SENSE',ETC. HOW I WISH THEY WOULD SAY 'HOW DOES THIS AFFECT YOU AND YOUR LIFE?' OR 'HOW ARE YOU DEALING WITH YOUR DISEASE?' THEY DO NOT KNOW HOW MANY ADJUSTMENTS WE HAVE MADE IN OUR LIFESTYLE, HOW MY HUSBAND ACCLIMATES TO MY CONDITION, HOW HARD IT IS FOR ME TO TOLERATE NOISE & LOTS OF PEOPLE OR SIMPLY PROLONGED CONVERSATION. THEY HAVE NO IDEA HOW MANY THINGS I CAN NO LONGER DO OR HOW HARD IT IS TO MAINTAIN AT THIS POINT. AND, THEY DO NOT EVER ASK. FRUSTRATING!! SO, PLEASE THINK ABOUT THESE THINGS AS YOU RELATE TO ALZ. PEOPLE. WE STILL FEEL THINGS, STILL WANT TO BE PART OF THINGS AND REALLY DO WANT TO SHARE. DENIAL DOES NOT HELP. (AT LEAST FOR ME). THANK YOU FOR LETTING ME VENT...IT HAS TAKEN A LONG TIME TONIGHT TO FORMULATE REASONABLE SENTENCES AND I APPRECIATE BEING ABLE TO SHARE.

  - CAROLE

• September 20, 2012 8:14 p.m.

  Dee...you are allowing yourself to be come part of HIS problem. I too have a husband with Alzheimer's. He also has COPD,[less than 1/4 use of lungs] neuropathy, heart problems, has had stroke,seizure. These are not going to get better. Stop trying to control what you cannot change. They MAY level off but they are not going away. You need to remember this is not YOUR disease, it is HIS.He may not feel his hands. He may not be feeling the bottom of his feet to the ankel or midcalf. He may have some fear of falling. What helped me to understand is Gail Sheehy's book Passages in Caregiving. I hope it will help you.

  - Shirley

• September 20, 2012 6:56 p.m.

  I know my husband is going into dementia/depression. Right now I am so involved in taking care of his physical needs(cancer and other conditions) I haven't the patience for his dementia. I feel there will be better control once the physical is met. He also has neuropathy and uses this as an excuse for any form (even sitting) of exercise. I believe in excercise to keep a person more fit than otherwise. We need more social support groups.

  - Dee

• September 20, 2012 6:24 p.m.

  fresh blue berries help ALZHEIMERS OR EVEN FROZEN .

  - candi

• September 20, 2012 6:18 p.m.

  I am sure that pharmaceutical companies all over the world would like to be the first to find a cure for dementia and I'm also sure that our government would like to see that take place because having an aging demented population will be a huge problem for our nation. What I see a lack of are facilities that will help families cope with the situation. But I don't see this as some kind of conspiracy. We are a very individualistic society, not yet experienced in setting up self-help social programs. For instance, every family should at the very least have access to a face-to-face support group, led by someone with expertise. Using the web is a start in the right direction, but hardly enough.

  - Ella

• September 20, 2012 11:16 a.m.

  My mother was diagnosed early onset at age 61. At first, Doctor said not to tell her, dad said not to tell anyone. So I was stuck with the devastating hurt and trying to honor the request of my dad and mom's doctor. I was getting sick. Holding it in only makes matters worse. Not telling anyone at first is a result of the hurt, depression and helplessnes you feel by talking about it...so you choose not to. Once the shock wares off you are more able to communicate to others and you feel better. Take your time, talk to others and be helpful to others as well as your self. Teach others what you learn because you will be surprised how many people out there that are ignorant to the disease and how it affects you. GodSpeed to all.

  - Lynn

• September 20, 2012 9:57 a.m.

  I strongly agree with opening up to this dreaded disease. My brother had it and I remember how his wife and children would not talk to us about his condition. We could see it and tried to talk to them but they would shut us out. Now I am dealing with this disease as his family was. My husband has been diagnosed. The problem is not me trying to advacate with his family and mine, but they accepting it. Since he is in denial to the point that he blame me for spreading lies to them not talking to me. I still try to let them know and ask them to call and visit him but they have backed off, not wanting to see how he can not respond as he use to. I don't worry so about his family as much as he not believing it and will not do the few things that he can yet do. Nor tell the doctor how is feel and even say the doctor is wrong in the diagnose. He gets angry with me for trying to get him to use his brain as much as possible by reading, working puzzles or communicating. He don't like me to say in front of anyone, not even his children that he has a problem.

  - Abbie

• September 20, 2012 9:18 a.m.

  Nice article really I like.

  - Icahbanjarmasin

• September 19, 2012 11:30 a.m.

  We all can help, because everybody will have information for their brain. The information are in doing in the daily life. But they have to do themselfs. All time, when they can do. Because we will help to do all the things. And they have nothing to do. So the brain becomes no or less information. And so the brain cells are not working. In this time the biochemical in the brain change. And the cells cannot work.So everybody have to do any thing they can, and speak in this time. So the information repair the biochemicals in the brain. And the brain cells will work. But they must have the individuell words, not our. So the brain remember a lot of things and becomes more input and so more output. We must change our social lifestyle.

  - Susanngab

• September 19, 2012 9:03 a.m.

  I have cared for my wife for about 5-6years & I knew what was happening but didn't want to believe it,but it did.I just couldn't get my family to understand. I finaly had to go to the emergency ward& found she had urinary tract infection plus dehydration & dementia. I admitted her in skilled nursing. it was the hardest thing I have ever done.I still feel very guilty for doing it. With all this said,I firmly believe that our gov't & pharmaceutical companie's do not want to hurry for a cure for fear of all the repercussion's it could create.

  - melvin

• September 19, 2012 7:15 a.m.

  The Alzheimer's Association should be working with local facilities to provide day care programs for those with early onset AD. It is very difficult for 24/7 caregivers to find suitable programs for spouses in their 60s, let alone younger. Were more such programs available, perhaps caregivers would spend some of that respite time advocating for all sorts of positve changes.

  - Allan