When Alzheimer’s Disease was first identified by Alois Alzheimer in 1901, the lady he diagnosed was called Auguste Deter. She was a wife and mother and was already living in an asylum at the age of 51. Having shown clear signs of her dementia throughout her 40s she was living with Young Onset Dementia and died at the age of 56.

Given that we are now 119 years further on it is evidently a moral disgrace that global recognition, let alone appropriate support and care services are still so meagre today. As is common with other rare conditions, we find that it is left largely to those of us experiencing the symptoms in our daily lives and those family members who support us to fight for access to appropriate health/social care and to have our human rights respected. 

Together we have great power. By combining our joint knowledge and experience, maximizing the skills we individually retain, we are capable of bringing about great change. Look about you and see the possibilities already out there to be part of this change.

It begins in small local groups where we can form strong, supportive relationships between each other, have the chance to socialize and educate others within our communities. By using organisations such as Dementia Empowerment & Engagement Project ( DEEP) these small groups can be assisted to work together in partnership to steer research and influence professionals & policy makers to address current failings in provision. On the wider platform Dementia Alliance International (DAI) with it’s membership consisting solely of those with a diagnosis, gives us a seat at the table at global conferences, European parliament and the World Health Organisation (WHO).

It is important that we never underestimate ourselves. We are capable of more than we can ever imagine.

(Misquote from Les Brown)


Categories Dementia, Uncategorized

5 thoughts on “Advocacy

  1. Thank you Julie. I have never read the history. It is unbelievable that so little progress has been made in all that time!!!!!


    1. Indeed. We are all working so hard to challenge misconceptions about what constitutes dementia. Only in this way will providers and policymakers practice accordingly xx 😎


  2. This is my big bug bear. Over one hundred years of ignoring people, drugging them and locking them up. Also Alzheimer’s is technically a dementia which appears in people before the age of 65, as diagnosed by the original doctor. Then calling nearly every dementia including those majority diagnosed over age of 80, Alzheimer’s muddy the waters in life expectancy etc. In my opinion dementia which starts after 80 should be called age related dementia. I believe both my grandparents had age related dementia but my parents have early onset Alzheimer’s diagnosed before 60. I try to educate people on the differences. Also the mistaken belief that anyone diagnosed with early onset has a rapid decline, were did that come from, very late diagnosis possibly. Thanks for your blog, take care.


    1. Thank you so much h Donna for your kind comments. Haven’t blogged for some time, but have concentrated on sharing the writings of more eloquent others. I’m feeling very frustrated that as my own energies fade and opportunities to take part in joint advocacy with others lessens that I see few people in my area living with dementia being encouraged and supported to take part in sharing their views. Along with your mum, I am eager to ensure that others with dementia feel able to become involved to some degree. In this way the enormous amount achieved by people like your mum can be further built on to improve rights and services for those yet to be diagnosed. Thank you so much for all you do. Love & hugs xx


  3. Julie you are an amazing lady. Anyone who suffers or their carers from this awful condition is so so lucky to have you on their side. Thank you for all your hard dedicated work. Gwen

    Liked by 1 person

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