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)