As part of our daily blog series for World Alzheimer’s Month #WAM, Dementia Awareness Month #DAM, or World Dementia Month, we continue to highlight stories about, or by our members, who all live with a diagnosis of dementia. Today, is a personal article, and a call to action, written by DAI board member, Julie Hayden from the UK. Thank you Julie.
Ignoring the stigma: A Call to Action
By Julie Hayden
Hi, I’m Julie Hayden from Halifax in UK. As part of World Alzheimer’s Month I thought I’d just share some musings with you on my dementia and how I prefer to be seen.
Firstly, despite my dementia, I am a person, not a disease or a condition.
I am, and always will always be, a mother, grandmother, friend and someone who cares passionately about the rights of others.
I have been outspoken all my life, and refuse to stop until my dementia forces me to do so. I realise that this sometimes makes me unpopular and means that some people view me as being difficult, but quite frankly, at this stage in my life, I don’t care.
Why should I allow my dementia, or others’ stigmatised view of it dampen my spirit or my drive for more justice in the world? I now assess others far more on their actions than their rhetoric.
I recognise many faults in myself, but refuse to see my fight for a fairer world for people with dementia as one of them.
I often think about how my uncooperative nature will impact on me later when I am living in residential care.
Will my unwillingness to do as I am told regardless of my wishes be interpreted as BPSD? Am I destined at some point to be “managed” by chemical cosh? I hope not, but at that point in my life I may have little or no personal influence.
The only thing that my friends, colleagues and I can do to prevent that happening, at least for those who follow on from us is to talk and write about our lived experience as a way of educating and enlightening others.
So please, join with us within DAI and the many other dementia organisations across the globe to make 2021 a year when we are able to take a step forward in banning BPSD and look at more humanistic and holistic ways of caring for people living with dementia.
Since you’re here, please donate to DAI today
By donating to DAI, you will ensure we can continue our work supporting people diagnosed with dementia, our families and friends who support us, and the broader dementia community of researchers and professionals.
Clearly, life is not over with a diagnosis of dementia…
Julie Hayden is a Board Member Dementia Alliance International (DAI), a Founder of Young Onset Dementia & Alzheimer’s (YODA), a Steering Group member of the 3Nations Dementia Working Group (3NDWG), Prime Minister’s Champion’s Group on Dementia and a
Board Member Deepness Radio & Recovery College.