And I wonder will they hear us. Advocates are getting louder and more vocal on the inaction on getting real change to happen for those living with dementia. Surely at some point, our voices must be heard.
Inaction is what has been seen for the past 25 or 30 years, there is much talk about how to help, there is always work being done around “ what can we do do make people’s lives better for those living with dementia? We continue to sit at the tables, desperately hoping for some glimmer of real change.
For me personally, I look and I see and I speak to the one change that is (IMO), the most important and significant change that needs to happen, and once it does ( I wonder when that will be), all the changes can and should follow suit.
So let’s look at what that is for me, the key for me is diagnosis. Diagnosis, how it is delivered, how it is followed up. Yes that’s it the delivery of diagnosis.
From GP’s to Specialist are given the tools and decide to change the way diagnosis is handed out, things will change for people living with Dementia. Being told you have a progressive terminal illness, that there’s nothing they can do, that they may have a couple medications that may help with the symptoms for a time, that you should really get your affairs in order, ( many are even told that they should start looking at and checking into assisted living and long term care , so when the time comes they are prepared.) what the hell is that? Then they wonder why a short time later you’re raging with anger, or so deeply depressed you border on being suicidal, then they all believe it’s your dementia making you that way, so they want to give you medications to alleviate the anger, anxiety, and depression.
The fact is delivery of diagnosis creates and perpetuates all of these things. This must change!
We know there is much that can help, nutrition, rehabilitation in the form of physiotherapy, exercise, social engagement, having purpose and feeling valued, we are offered none of the things that can help us maintain a good quality of life for a good long while, to keep us being an active and engaged. Occupational therapy is not given. Why aren’t we provided counselling for ourselves and family members to deal with the perpetual grief we must live with. when my husband died I was offered grief counselling, yet I’m told I have a terminal illness and I am offered none?
This must change!
How about we are given a resource guide with various groups and organizations that can help us and that provide services? How about being told and guided that there is much that we can do to help ourselves? How about lining us up with Nutrionalist, Various Therapists? Help with using technology, which greatly assists us? How about encouraging us to do all we can to help ourselves? Instead of thinking if we do and are “ could we really have dementia”? Instead of humiliating us with more mini mental tests every three months to see where we are on the scale, ( we actually know things are changing for us). And oh by the way did you know we aren’t stupid and after a time, learn tricks on how to manipulate the tests to a degree.
The number on the scale is more for you than us. ( I personally don’t care what the number says, I care about how I feel, I care about what my quality of life is looking and feeling like, numbers don’t tell you that). But if you actually talk to me I can tell you. We also know that every persons dementia will present differently, so why then does one think the number will give you the information you need.
Time to throw out the old model
So let’s start by building a program that is in every medical program, from doctors to therapists, nurses and nursing assistants, that actually covers and teaches them about dementia as it is today, not just late stage end stage. We don’t just teach about end stage cancer, or a multitude of other illnesses, so why aren’t we teaching, about dementia. It’s skimmed over at best.
It’s going to take the Doctors and Clinicians of today to decide they can do better, want to do better, and to start committing to making the change before all the other changes will take place. I wonder how many are willing to be at the forefront of being the change?
There is so much that needs to change, from delivery of diagnosis, to services offered, to organizations working collectively, it seems daunting, but perhaps if we can finally make the step to start with diagnosis delivery we will be on our way to having and being supported to have a quality of life.
This is Dementia Awareness Month, this is the time for change.