Is this what I have become? An advocate is someone who promotes and supports a cause, an activist and campaigner for change. My blog today is about the service provision of care
for people of all ages with dementia, disabilities and other chronic illness, and in particular, anyone who needs in-home, respite or residential care. There are so many amazing personal carers, service providers and health care workers in the community, I feel uncomfortable talking about the areas where they as a community need to improve our experience of care. Conversely, there are so many times when our care has been so appalling it has become imperative to speak out and write about it. As with speaking out
at the Fight Dementia rally, if I don’t talk about how it feels to be in my shoes, how can I reasonably expect anyone to know what it’s like, nor therefore, change the way they provide care? Over the last few weeks, I have heard stories of absolute despair, horrific tales of subhuman care of the most vulnerable people diagnosed with dementia, those living in residential care facilities. There are incidents that degrade and humiliate the person with dementia, where the lack of activity causes serious de-conditioning thereby causing further frailty and dependence, all of which debase and anger the person and their family. As a 53 year old, the thought of entering residential or respite care that is not age appropriate is too terrifying to comprehend. Having a carer in my home felt invasive, humiliating, embarrassing, something I thought I’d never have to consider until my old age. I wanted to place a bag over my head on the first trip to the shop with a carer in a uniform by my side! My confidence and self esteem was greatly undermined. With the statistics currently at 214 people being diagnosed with dementia per day in Australia, it is imperative we all understand the human cost of dementia.

Dementia care is caring for people who often do not know they need care, and don’t want to be in care; no wonder we may become angry and upset!

For some time, I have been working on a list of topics and ideas for service providers to think about, to try in the work place, or request for yourself or your loved ones. For those interested, go to the Dementia page. Your feedback is very welcome.