Today I presented at a forum, Younger Onset Dementia: A time for change, and my presentation was titled ‘The unique challenges of younger onset dementia’. Sometimes when I suggest things might need to change, there can be a backlash, but with the title of the forum being what it was, I decided I would be among friends and so wrote about some of the more difficult challenges facing people with a younger onset dementia (PWYOD) and our service providers. They were receptive, and interested to hear how things are from the perspective of a consumer.

The first section of one of my slides was this;

Why do we need change?

• If it’s not broke… don’t fix it!

I then elaborated by saying we have all heard this saying before, and it is valid if things are going well. However, as a PWYOD I believe our care and services need ‘fixing’.

The next part of the slide said this,

Here is a simple example of how you would find change easy…

• Consider the following:

–   Alzhimers Australia

–    Wood you correct the above spelling error?

• OF COURSE, you would correct both misspelt words!!

It is hard to see change if needed if what you have always done is easy, and no-one tells you it needs to be changed. PWYOD are in a unique position to evaluate the systems and services, as they are more likely to seek diagnosis earlier than the elderly, and they are more likely to speak up. Dementia is not the most feared disease to the under 65’s, and in fact most of us didn’t even suspect we might have it! The next onslaught of people with dementia, younger and older, are the baby boomers, who historically have not been ones to sit back and just accept perceived injustices or have their decisions made for them. I’ll be adding more about this on another blog soon, as I am almost too tired for writing a blog tonight at all!!