Monday, August 17, 2009 Big Sister asks

Q: Down's and Alzheimer's

Is anyone dealing with a Down's person with Alzheimer's?

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Answers (6)

Christine Kennard, Health Pro

8/18/09 6:15am

Hi Big Sister

I have a lot of experience working with people with Down's and some who also had Alzheimer's disease (I was a nurse). Can I be of help?

Christine

Big Sister

8/18/09 7:06pm

Bless you! Buddy was diagnosed almost two years ago, and we moved him from an independent living program into a group home run by the same place (it's where he works at a sheltered workshop). He was there for about 8 or 9 months and finally getting used to the idea when he fell and broke his leg. That required surgery, a hospital stay, then a nursing facility for rehab. That meant he was gone from the group home for almost three months. Taking him back there (this past March) was harder, and he has been miserable ever since. He has walked away from there, and has tried repeatedly to leave Sunshine by either getting on a bus or walking away. He did succeed one time to get the bus, and it took a couple of hours to find him. His destination was always back to where his last apartment was. His dislike for the group home had become so great that I brought him home with me yesterday. He can live with me and still go to work, and if this arrangment seems to help his disposition, then that will have been the right decision. My husband, thank goodness, has always wanted Buddy to live with us, so that part is no problem. We have a good geriatric doctor who is helping us through, but it would be so good to talk with someone who really understands the Down's part of all this. Their makeup is a bit different, and their aging process is too. Buddy is 56 and in good health except for a thyroid condition which has been under control with the same dosage of meds for a very long time. I mainly don't know what to expect except for what I've read, and none of it is really geared towards Down's. Any insight will be most appreciated. Thank you so much. Kathy

Christine Kennard, Health Pro

8/21/09 1:07pm

Hi Big Sister

Lovely to hear from you, I hope I can be of help. Buddy is so lucky to have you looking after him and listening and seeing what he needs. Coming back to live with you does sound the best thing. Has Buddy been diagnosed with Alzheimer’s? How long ago?

I initially answered your question as I was putting together a share post for caregivers about Down’s syndrome and Alzheimer’s disease. It will give you a few ideas hopefully.

You are right- there is so little information about caregiving to someone who has Down’s syndrome and Alzheimer’s. There are, of course some differences, but overall if you read up about Alzheimer’s on this website and from books and the Alzheimer’s Association you will get most of the general info about the disease and you can apply that to your son’s care. Has his doctor prescribed any medications for him?

Christine

Big Sister

8/21/09 5:53pm

Yes, Buddy was diagnosed about a year and a half ago. He's on Aracept, Namenda, Abilify, and Welbutrin. From what I've read, I think he's in stage 3, and his doctor seems to think so, too. After breaking his leg in January and having surgery, some advances in the disease were noted. The one thing I'm not used to in him is his obstinance. He was never very argumentative, but he can be very difficult at times. This change in behavior is so unpleasant from someone who was always so easy to be with. But I will say that this week has been better in that he seems to have regained some of his sense of humor, and we attribute that to not being under the stress of living where he felt trapped. We had a meeting of all concerned parties today, and it was agreed that he can continue to work as long as he doesn't try to run away. I don't think that will happen again. I appreciate your input and I'll definitely read the material you suggested. I guess I just needed to talk to someone who was familiar with this particular situation. This is all so new. Thanks again. Kathy

Christine Kennard, Health Pro

8/22/09 8:05am

Hi Kathy

The changes you are seeing in his personality, his obstinence, being argumentative, are due to Alzheimer's. The brain damage this disease causes mean that he is not behaving that way on purpose. I think keeping that in mind will help you cope better.

I am sure he will be happier with you at home. He may well try to leave work again at some point in the future, but this will probably be due to confusion. I am sure though, that by reducing his stress levels he will benefit.

I am pleased you have a good doctor. He/she will be able to provide you with information, and inform you of any local facilities that may help you in the future. Your local Alzheimer's Association can also be invaluable for information and for support groups for you and your son.

My best wishes to Buddy, and you and your husband

Christine

Big Sister

8/23/09 8:09am

Thank you. I read the article you sent, and it was very informative. BTW, Buddy is my brother. He's 56, and I'm 63.

It's been good talking with you - I feel sometimes that I need "verifying". I want to do what is best, and I want to understand, and I hope I'm not making excuses for him. But I know him better than anyone, and these changes are real. He's not the same person, he doesn't grasp a concept like he used to, and the personality definitely isn't my sweet brother. I'm just going to enjoy what I can for as long as I can, and we'll deal with the situations as they come. I praise God for the supportive people I have in my life, and I know we'll manage. Thank you again for your insight. Kathy

marcia0917

3/24/11 2:00am

yes, my happily married,very independent, 32 yr old married Downs son has just been diagnosed with alzheimers. His personality seemed to change overnight but he has no issues with memory at all. He was a hard working, fun loving social young man and now goes to a day program and shows little interest in friends, family and most social activities. Abilify has been a wonder drug and he has just been started on aricept. We are keeping him in his home with his wife for as long as this disease will allow it. She has brain injury, but does very well. We are also looking into guardianship. Prayer help us live day by day, and accept this awful disease.

Carol Bradley Bursack, Health Guide

3/24/11 8:46am

This is so specific that I'd contact the Alzheimer's Foundation of America at www.alzfdn.org or the National Down Syndrome Society at www.ndss.org. There were certainly be additional challenges with this.

Please keep in touch and share what you learn if you have time.

Take care,

Carol

3/24/11 2:45pm

I think the brain diseases Autism and Asperger's probably relate to Alzheimer's. I mean given that it is the brain that has defects.

My father-in-law has Asperger's probably as he is in his own world not knowing the reality about his son not working for him at all and he prefers to be alone and socialization is secondary to him. Now he has stage 6 Alzheimer's.

I personally feel that the researchers should try to find out if there is some connection here.

Regards,
Nina

Q: Down's and Alzheimer's

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