Hello

 and, yes many many caring caregivers wait too long to discover, admit, investigate, and/or take their loved one to a neurologist for a through dementia screening. When I was first diagnosed I read that the average life span of someone who is diagnosed is 8 years from the date of the diagnosis. I began to prepare to die! I wrote a touching memorial service outline for yours truly, found just the right recording of amazing grace (a duet by Joan Baiz and Dolly Parton), and put the rest of my affairs in order - oh yes I also started to move up and down Elizabeth Kubler Ross's stages of dealing with death (and I hadn’t even read her book - just knew of it).

My family of course realized I wasn't dying and tried to convince me I was wasting emotional energy and my time focusing on the end rather than the moment. About a year after my diagnosis I read that the average age of someone who is diagnosed with dementia is 72! I was 58 when I was diagnosed.

What I have discovered is life is never about getting the diagnosis. I'm all for early diagnosis, I'm all for screening for dementia when you are 50 and every two or three years after than. I have some qualms about folks self checking or diagnosing themselves or their loved ones with this or that test. Most all this or that tests produce educated guesses, but don't provide enough information to be helpful in living day to day. Plus some of them are just plain unreliable. The answer to the question "Does he/she have dementia probably of this or that type" is "probably if you are asking the question to already know the answer." You are hoping the answer coming from a doctor will somehow "make" your loved one accept everything you say and ask of them - they should do it because they "have dementia, the doctor said so, the test said so."

There is too much emphasis, in my sometimes humble opinion, about getting someone to a doctor to be diagnosed. The real life issues are the symptoms, the problems, the events which other people see and which concern them. These are what must be addressed, but not necessarily through a diagnosis or the words you have dementia, you have Alzheimer’s disease. Folks make getting the diagnosis the first and biggest issue, missing of course the need to come together and begin immediately to support, to enable their loved family members to continue to live a life safely, in the moment, and purposeful and purpose filled.

Richard

Jacqueline Marcell, Health Guide

9/27/08 2:30am

Thanks for your comments Richard--and so sorry to hear you developed AD at such a young age. Oh yes, I agree, so much more needs to be done for patients and families after diagnosis, which I have written about many times. In this post I am trying to help the millions who go undiagnosed until a crisis, when they are much farther into the disease. If families knew to do the simple tests of the MMSE at home, observing that reality may snap them out of their denial and motivate them to get their loved one to the right doctors sooner. With early diagnosis and treatment, the heartache of nursing home care may be delayed or hopefully even eliminated