Alzheimers and Down's Syndrome

Helbel

Registered User
Feb 5, 2016
5
Hi there, I'm new to this forum and would be interested in hearing from people who have cared for a relative who has DS and Alzheimers.

My sister with DS was diagnosed 18 months ago, she is 41 and in a nursing home. I'm feeling a little lost although I am waiting to hear back from the helpline and have contacted the DS Association. The care at the home is amazing but I just need some support during this difficult time to make sure I am doing the best for her.

Many thanks,

Helbel
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,417
Dundee
Hi Helbel and welcome to TP. I'm sorry to read of your sister's diagnosis. It must be very hard for you. I know you will find lots of help and support here. Thinking of you both.
 

Kevinl

Registered User
Aug 24, 2013
4,774
Salford
Hi Helbel, welcome to TP
I've no idea what a combination of the 2 conditions would be like.
My only experience of people with DS is limited to friends with children who have it and one adult sister of a friend so I'm no expert.
They say one here that "when you've seen one person with Alzheimer's you've seen one person with Alzheimer's" it doesn't seem affect everyone the same, there are common traits but each is an individual journey.
My feeling is that she will be as she always has been, but with a quicker rate of decline, but I know nothing so that's just my guess.
As with the rest of us it's better if you deal with the reality of the person the way they are and forget the labels of DS or AZ, they're just names the only name that matters is your sister's name, sure it's Sis with DS and Sis with AZ but it's still Sis so just do what's best for her as an individual and forget the labels.
I guess you've been living with her condition most of if not all your life so really you're the expert in what Sis needs and wants, and what's best for her.
Keep posting
K
 

Helbel

Registered User
Feb 5, 2016
5
Hi Helbel and welcome to TP. I'm sorry to read of your sister's diagnosis. It must be very hard for you. I know you will find lots of help and support here. Thinking of you both.
Thank you xxx
 

Helbel

Registered User
Feb 5, 2016
5
Hi Helbel,

I don't have personal experience of DS and Alzheimer's but you may find this fact sheet of some help.

We are all here for you xxx
Thank you. I have read that before but I needed to reread it so thank you for posting for me and hopefully anyone else in my position. xxx
 

Helbel

Registered User
Feb 5, 2016
5
Hi Helbel, welcome to TP
I've no idea what a combination of the 2 conditions would be like.
My only experience of people with DS is limited to friends with children who have it and one adult sister of a friend so I'm no expert.
They say one here that "when you've seen one person with Alzheimer's you've seen one person with Alzheimer's" it doesn't seem affect everyone the same, there are common traits but each is an individual journey.
My feeling is that she will be as she always has been, but with a quicker rate of decline, but I know nothing so that's just my guess.
As with the rest of us it's better if you deal with the reality of the person the way they are and forget the labels of DS or AZ, they're just names the only name that matters is your sister's name, sure it's Sis with DS and Sis with AZ but it's still Sis so just do what's best for her as an individual and forget the labels.
I guess you've been living with her condition most of if not all your life so really you're the expert in what Sis needs and wants, and what's best for her.
Keep posting
K
Thank you so much...yes she's still my baby sister who I adore and always will! She is the teacher and I learn from her...and she teaches all those around her too!!! I just needed someone to tell me all the above, I'm so very grateful xxx
 

Louby65

Registered User
Mar 26, 2014
619
Scotland
Hello helbel. Your sister is fortunate to have a very caring sister who is looking after her well being . In my experience of people with Down's syndrome , they are very happy and loyal and who thrive on love and affection . In my mums case she has vascular dementia , she is happy most of the time ( especially when she's out in the car) and thrives on love and affection . So for your sister to have both I only hope it means that she has a double helping of love and affection to help her stay happy and safe in the knowledge that her big sister is doing the very best she can to ensure she is well looked after . Best wishes to you both . Lou
 

Helbel

Registered User
Feb 5, 2016
5
Hello helbel. Your sister is fortunate to have a very caring sister who is looking after her well being . In my experience of people with Down's syndrome , they are very happy and loyal and who thrive on love and affection . In my mums case she has vascular dementia , she is happy most of the time ( especially when she's out in the car) and thrives on love and affection . So for your sister to have both I only hope it means that she has a double helping of love and affection to help her stay happy and safe in the knowledge that her big sister is doing the very best she can to ensure she is well looked after . Best wishes to you both . Lou
Many thanks and my best wishes to you and your mum x