All people with dementia and those who are supporting us are survivors, not victims. Dementia is truly one condition that tests everyone in so many different ways.
Resilience and Optimism may help, but are hard to grasp or hold onto on the bad days!
We need perceptions and attitudes to change and positive discourse and discussions to move away from deficits to supporting disabilities and what we can still do.
Our families, care partners, kids, parents, advocates and health care professionals… all need much better education.
Families and care partners need much more tangible support to be able to put in the relentless number of hours in every day that they provide to support us. They may do it because they love us, and want to, but I watch on the sidelines as it almost kills some people.
Telling them to put themselves first, to look after themselves, and put us into respite or full time care is not the best or easiest solution for them or us. I know from personal experience; I’ve been a family care partner!
It is an unfunded, under-honoured, and for many, a lonely isolating 24 hour a day role.
Governments, health care professionals and service providers, and advocacy organisations have a responsibility to find the will, and funds to do better for the 50 million of us living with dementia, and the projected 152 million by 2050.
And our families or advocates.
Without them, we’d all end up in residential care, long before necessary.
With adequate support for us, and those supporting us, many more of us living with dementia will become survivors, and not only victims of dementia.
We will mostly stop being the ‘burden’ to families and Society that so many refer to us as…
We are all heroes!