How valid are the voices of people with dementia?

As a person living with a diagnosis of younger onset dementia, the voice of people with dementia is a particularly ‘hot topic’ for me. I have lived well with dementia so far, and although deteriorating slowly, continue to live well, with many and varied disability supports in place. When I first started attending events including conferences…

Calling for support…

There are a couple of links below for which I ask for your support. The first is a survey aiming to support a more inclusive voice of people with dementia at ADI2015, being held in Perth Western Australia. The phrase ‘nothing about us without us’ is still bantered globally, and until now the voices of people with…

Simple Dementia wish list

Yesterday I attended a Policy forum at Health Consumers Alliance (SA) to have a voice as a consumer about policy wishes for the next election in South Australia. It was an interesting meeting, with excellent input from the organisation and other consumers. Mental health, the homeless, and aged and dementia care were well represented, as…

Finding a voice for PWD

I’m often challenged by the fact that conferences, seminars, forums or educational programs about dementia, often marketed to people with dementia (PWD), and as events which are inclusive of them, are organised exclusively by people without dementia, and for the most part, without people with dementia as plenary speakers. Many of you know I have regularly railed against…

The purpose of writing about dementia

My website and Daily Digest or blog has grown legs, and is now being referred to as a resource for a variety of dementia training organisations or other sites. It is exciting and empowering, and also gratifying it is seen as useful, but with this comes a certain amount of pressure to ‘perform’! Some time…

Why speak out?

Richard Taylor gently reminded me yesterday of the Abraham Lincoln quote, about only pleasing some of the people some of the time. Thank you. I feel vaguely fragile after another week of taking deeply personal risks by speaking out honestly and receiving more rebukes or disagreement with the way I feel about things. My dear…