New Diagnostic Guidelines Proposed

The New York Times reported this week that medical experts are proposing changes to the criteria for diagnosing Alzheimer's Disease.  The objective of the changes is to diagnose (and eventually treat) the disease earlier.  You can read the article here.

This is exciting news on several fronts.  The most obvious is that through early diagnosis, the new drugs being developed can reduce or prevent the kind of debilitation experienced by Alzheimer patients currently. 

More subtly, an earlier diagnosis (and therefore communication with patient and family members) will improve the ability of all to cope with the disease.  My experience may not be typical, but I did not receive a clear diagnosis of my mother's illness until she was no longer capable of looking after herself.  During the five years of her gradual decline, this left me struggling with how to provide care for her all alone.  Without the word "Alzheimer" attached to her illness, I didn't know how to access the coping resources that are available.  It may not have been physically easier and I may not have done things differently, but I would have coped much better mentally/emotionally had I known what was happening and what was likely to happen as the disease progressed.

Until these guidelines are adopted, beware when the doctor says "dementia".

A Port in a Storm

A benefit of getting a clear diagnosis for any disease is that you can use the Internet to educate yourself and to reach out to people who are experiencing similar things as you.  You are not alone.

One of the things I hope to do on this blog is to share useful links.  I'll keep adding to the "Useful Links" section, and write a bit about them when I find them.

Here are a few that I have discovered already:

Peace of Mind - Caring for Seniors at Home  I found this during last December's horrific snowstorm when I was trying to find a way to get groceries to my mother, who was living alone. 

Peace of Mind has information about and links to Community Services, Caregiving, Housing, Transportation, and lots more.  Bookmark this site, particularly if you live in the Lower Mainland of BC.

Alzheimer Society of BC  Lots of good information and local links here.

Alzheimer Society of Canada  More great links, information, and links to the other Societies across Canada.  One of the things they sponsor is a very active Message Board, where you can chat and exchange information with other people who are going through the same thing you are.   The personal experience here can be very useful, and as Diane from Peace of Mind (above) says, "It is therapeutic to share information."

When the Doctor says "Dementia"

Alzheimer’s disease and related dementias are not a part of normal aging.  Read more here.

This is the most important thing you should know.  

When I heard the doctor say that my mother had dementia, I thought that she meant normal, aging, memory problems.  I didn't realize that she was pronouncing a medical diagnosis, and I didn't ask for more information, nor did I go home and "Google" dementia.

Five years later,  in July, 2009, when she received a mid-stage Alzheimer diagnosis, I did some research.  What I discovered shocked me.  It also made me very sad.  My mother and I had spent five years on a journey without sign posts or other guidance.  I believe that these years would have been easier for both of us if I knew then what I know now.

If your doctor (or the doctor of a loved one) has said "dementia", here's a place you can start to get more information:Dementia Journey.