Just got off the phone with a family friend she told me the news that her partner has just been diagnosed with Alzheimers at age 52.
She is, of course, devastated and she is starting to realize that most of the support networks and services are geared to older people with AD.
So I am asking my readers for
Books
Groups
Links
People
who have something to say about early onset AD.
sallyh50 says
May 6, 2012 at 7:06 pmHi Bill
Have been to a book launch today, Monday 7th May with Alzheimers Australia Vic, AUSTRALIA for activities for people living with dementia. whilst there I discovered that they have a book, written by a gentleman who’s wife was diagnosed with dementia at 52. The book is called “Remember me, Mrs V?”, written by Tom Valenta printed in 2007. Started reading it today and it is a book about 14 different families who have a loved one living with dementia. This could be a source for your friend. As the reviewer says, it is easy to read. This book can be reviewed at the following link.
https://www.chf.org.au/pdfs/ahc/ahc-2006-3-review-remember-me.pdf
Alzheimers Australia also have a lot of information for people diagnosed with AD and lots of fact sheets. The people from Alzheimers Australia also recommended that all the family and friends need to get involved as early as possible to understand what is happening and potentially what can happen to their loved one in the future.
Hope that this helps Sally H, Eden in Oz & NZ
facebook.com/edenoznz
Martibailey says
May 2, 2012 at 11:12 pmIn DC we have formed Club Memory, a social group with people and care partners who have MCI or diagnosis of early stage dementia (any form). We’ve been doing it since last September and it seems to be meeting a need as we have been steadily growing. The group meets for lunch or other things outside of the formal context and supportive relationships are the result. It helps when the person and care partner who have a new diagnosis have people to talk to that have “been there.”
LoriLaBey says
May 2, 2012 at 11:23 pm@Martibailey I would love to get more specific information to add to my resource list of memory support groups. Can we connect offliine? I’m on linkedin are you?
LoriLaBey says
May 2, 2012 at 7:09 pmHI Bill,
I would suggest 2 groups on facebook:
Memory People – started by Rick Phelps who has early onset. The group is a closed group which mean posts will not show up on your home page only within the group. There are people with dementia, care partners both family and professionals, as well as advocates on the site. Great discussion s and advice from those in the trenches with the disease. Support in a community fashion is available pretty much 24/7 as it connects people all over the world.
Memory Keepers- Started by Maryann is a great group as well. It’s for spouses & partners caring for their loved with memory loss. This is a small intimate group but very supportive and knowledgeable.
I would also recommend checking in to Memory Cafe’s. These are new to the US but they are starting popping up all over. If you can email me with more details on your friend’s location I’d be glad to see what I can find out. I’m trying to track were they are located. Or check Alzheimer’s Cafe as well.
If your friend wants to chat with me and give me a better idea of needs I’d be glad to talk.
I’m getting really close to launching our 2nd version of http://www.AlzheimersSpeaks.com which will be a much expanded version of what I have now. So dementia resources in many platforms will be accessible. The sites goals is to raise the voice of all connecting us to products, services and tools in an easy fashion.
I hope that helps for now
Lori La Bey
Alzheimer’s Speaks
Carolatamazingplace says
May 2, 2012 at 4:34 pmCarol in Houston
There is an early onset support group that meets in Houston. The patient and caregiver attends the group together. They also offer various activities and resources to support this clientele. A list of meetings and times can be found on the alz.org website.