Please Please Just Stop

The last few weeks have seen me in many conversations with others living with varying types of dementia and Alzheimer’s. There was one thing in all those conversations that was so common, was so frustrating for those living with Dementia that I felt it time to talk about it.

We need the medical professionals, as well as the general public to stop equating Dementia to just memory loss, when in fact memory loss is just one small component of it. We need them to focus time, efforts, on all the other pieces that are so vast and complex. Things like the sleep issues, balance and coordination, vision issues, then the more complex things like oxygen levels, heart and lungs issues, blood flow, troubles with all major organs, infections, Dysphagia ( (swallowing),Aphasia, (speaking), Cognition which is also much more than memory. And here is the biggest, yes the biggest Inflammation, Inflammation, Inflammation…. it directly effects and complicates all other aspects. And finally memory. This does not mean to dismiss the importance of the loss of memory, but it is time to put more focus on the very complex health issues that people living with dementia deal with.
When they ( we) say they fight hard every day to manage the day, they truly do because of the multiple pieces that they have to manage. It’s exhausting to manage the day, put most do it with a joy and happiness that flies in the face of what most think one would or should be feeling when living and trying to manage such a complex illness.

What most want is for a shift to finding medications to manage symptoms for many of these varying pieces of medical conditions, so they ( we) can then have a better quality of life. Most of us living with Dementia realize that a “cure”, is not probable, we can accept that. We do not live looking through Rose coloured glasses, what we do want is more efforts being put into finding things to help manage some of the complex issues such as the inflammation, which directly impacts our cognitive abilities, and effects all other body systems.
Technology can and a great deal of work is being done to create tools to help us with tools to help us in our day to day with reminders for medications, appointments etc. Technology can help keep us safe with fall detection, GPS, Technology is and has come along way. We need the medical piece to stop focusing on memory loss and start focusing on helping us manage all the things that are feeding into making our memory loss worse.
We need the general public to understand and stop with the “you don’t look like you have Dementia” crap, and start understanding, we can still speak think and do, much more that you realize, you cripple us with your outdated understanding of dementia. People are being diagnosed younger and younger and we need to start educating and looking at it with a fresh outlook. We help people with other illnesses manage their illness so they can continue to live a full and complete quality of life, it’s time the same is done for those living with Dementia.

We have been playing nice in the sandbox for over thirty years trying to get change to happen, maybe it’s time we stop playing so nice and start demanding that change actually happen. Too much is influenced by big pharmaceutical and political arenas, time for the dementia world to unite stand up loudly for the changes that are actually needed.