To all EOAD members - Please log onto the home page - www.thealzheimerspouse.com - and click the link under the Breaking News Section. From research by the Prince of Wales Research in Austrailia - they have put together a complete, practical guide to Early Onset Dementia. There are also sections in there on Lewy Body's, FTD, Huntingtons, vascular dementia, and Parkinson's. It is the most complete guide for EOAD I have ever seen. It is 44 pages - I have not read it all yet, but it looks well worth the time and effort.
There is much in there that can be useful for everyone caring for a dementia patient, early or late onset. I urge everyone to download and read it.
Please look under Joan's picture--it's there. I understand why you all have trouble seeing it, there's so much stuff to look at! I skimmed it very quickly--impressed with the discussion of 2 different caregiving styles. I wish someone would develop a course on that alone for caregivers--to be taken upon the LO receiving the diagnosis. Imagine what a difference that could make, for the person with the disease, as well as the caregiver. I'm from the problem-solving school of thought. I learned quickly at the beginning of this ordeal that decisions based on emotions alone were always 100 percent wrong.
I'm sure when Joan is finished cleaning out her house and moving, she'll address the need to "clean up" her home page. Perhaps some things don't need to be as BIG as they are, creating more space.
I have about 15 sites book marked that are related specifically to FTD and EOAD. I've been researching the subject heavily for a year now trying to find that proverbial 'clue'. I have to tell you, this reference is THE MOST comprehensive and beneficial I've seen yet on this subject. I've just finished reading roughly half of it.
I cannot believe my good fortune in finding your site. Probably wouldn't have known of that wonderfully informative paper otherwise. Thank you for all the good work you've done here, and continue to do, for so many good people.
I agree, this reference is very good. I didn't see one thing that I disagreed with. Good discussion about how the brain works and how damage to a certain area caused certain symptoms.
Wow, what a report, I now believe Jim has FTD with Lewy Bodies. It described him to a tee. I don't know why I'm crying, I didn't really learn anything new, just seeing it described so well, I guess. Thanks Joan, I have forwarded the link to Jim's family, hopefuly it will help with there struggle with denial.
I think I am blind. I cannot find the guide. I am especially curious because dh has EOAD and now has tremmors and shaking that the dr said is the progression of the disease. I need to read this. Help!
Go to the home page - www.thealzheimerspouse.com. The front page begins with the bride and groom picture. Below that is the Welcome sign. Below that is the information about my book. Below that is my picture. Right under my picture is a picture that says Breaking News. Right next to that, it says "Excellent Resource", and it says "Download Online Guide to Early Onset Dementia".
I am going to put it as its own resource on the left side right with the other EOAD sections, but I haven't gotten to it yet.
Kathryn, I had lots of trouble finding the link too. I had to close the site and reopen it to make it appear. If you have the website open, scroll down just about one page until you see Joan's picture with beside it the text in a blue background: Scroll down for Joan's Weekend Notice Right under Joan's picture is a blue box saying Breaking New. Beside it is the link that you need to click on EXCELLENT RESOURCE - DOWNLOAD ONLINE GUIDE TO EARLY ONSET DEMENTIA - A PRACTICAL GUIDE by Prince of Wales Medical Research Institute - Austrailia. Here is the link if you can copy and paste: http://www.powmri.edu.au/pdf/Media%20Releases/POWMRI_-_Younger_Onset_Dementia_Help_Guide_-_13_August_2009.pdf
If it still doesn't work, email me a phone number and I'll call you and talk you through it (I have cheap transatlantic telephone).
I just put up the Early Onset Guide on the left side of the website as one of the resources. It is right under the EOAD section. All you have to do is click it, and the guide comes up in Adobe format.