I repeat: “Please don’t call us sufferers”

Guest blog by Kate Swaffer (pictured) who attended the Alzheimer's Disease International (ADI) Conference in Peurto Rico

During the recent ADI2014 conference, it was apparent the language being used by researchers and other presenters to refer to people with dementia is still very derogatory, stigmatising and discriminatory.

Now really, do any of these people look like they are suffering, or like they are victims? It looks more to me like we are meaningfully engaged, in the real world, and having fun. I know this to be true, because of course, I was there!

People with dementia are learning to live well with dementia, and one of the goals of Dementia Alliance International is to give a voice to, and to empower others with dementia, to live well to. We will publish articles on many of the issues we are facing, written by people with dementia, rather  than by those without dementia, who choose to write or speak “about us,without us”.

It is no longer appropriate for this to happen, and a brilliant blog written by one of our co-founders and Board members, John Sandblom yesterday speaks about this too. John wrote:

“We are just changing in ways the rest of you aren’t, we have increasing disabilities and the sooner it is looked at that way instead of the stigmas, misunderstandings and complete lies the better for all of us living with dementia. We desperately need others to enable us, not further disable us!”

I hope we reach our goals and dreams before we all die, but it is important to live as well as we can until then, and as Richard Taylor rightly says,

“we are going to die most likely because of dementia but guess what, all the rest of you are going to die too”.

Live every day as if it is your last, just in case it is…

I also often say;

"being diagnosed with dementia is not as much fun as your birthday party, but there is no reason to die now”.

We welcome comments on this issue - share your thoughts below? and thankyou to Kate for allowing us to share your post with our readers.


Original post - http://kateswaffer.com/2014/05/09/i-repeat-please-dont-call-us-sufferers

For more information on this topic, Dementia Australia also recommends reading the "Talk to Me" document developed by the Dementia Australia Dementia Advisory Committee to set out good communication tips for talking to people with dementia.

About the author:

Kate Swaffer is committed to meaningful dialogue with a wide range of stakeholders about the critical issues impacting a person living with a diagnosis of dementia and their loved ones, and striving … to be inspirational, motivated and positive, loving, adventurous, serious when I need to be; to be courteous, conscientious, courageous,  thoughtful, honest, fun-loving, and attentive to detail; to be focused, to try to live an extraordinary life, to wear clean shoes and to use my manners.

She is a Mother, Daughter, Wife, Friend. Poet, Blogger, Author, Speaker and Chef. BPsych, BA Writing and Creative Communication, Grad Dip in Grief Counselling, Nurse. Advocate and activist for aged and dementia care.


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