There are many positive things happening globally about dementia. Research is making small headway, governments are at least starting to listen, the carers of people living with dementia have had a strong voice for some time, and now, very occasionally people with dementia are speaking out. Richard Taylor and Christine Bryden are two people I know who were at the forefront of this movement, and they helped pave the way. Both have published books, and continue to speak out. Like them, I have now been speaking up for people with dementia (PWD) and aged care for a couple of years, and like them I have experienced the personal cost in doing this. But I will not stop until I have no voice, as regardless of us speaking out, the decisions about our care and futures is still being decided by others, without due consultation with the people living with a diagnosis of dementia.

The ‘experts’ are still mostly telling us what is best for us, without asking us, and this is to the detriment of PWD. I attended a meeting in Canberra recently with a large group of people from around Australia making recommendations to the Federal government about what to do with the new funding they have allocated to dementia. There were many people very supportive of having someone with PWD there, but many were also vaguely outraged, some even saying there are not enough people with younger onset dementia to even bother wasting funding on us. There is no other group of people who would be dismissed like this, not even those with AIDS, disabilities, cancer or mental health are refused a voice anymore. But society is still thinking PWD cannot have a voice, that we are the ‘vacant dements’ as we are still occasionally referred to in the literature. On a national committee making recommendations for PWD, of about 20 people, but there are only 2 of us with dementia. The Federal Governments Ministerial Dementia Advisory Group does not have a PWD on it! On the board of Alzheimer’s SA, there is no one with dementia. A new committee set up in SA has one PWD out of a group of almost 20. I was told recently that someone like me is A-typical of a PWD, but that does not mean PWD should be involved at that level of decision making! Does this mean I should stop speaking out for our rights?

The ADI London conference this year had more PWD giving presentations than ever before, and I salute them for this, but still they were not mandatory sessions for the health care professionals who should be listening to what PWD need and want. I regularly attend conferences, workshops, seminars and forums about dementia, with not one person with dementia asked to present or be involved, but a forum full of ‘experts’ telling each other what is best for PWD. Many talk about how hard it is for the family carers of people with dementia, and there is absolutely no doubt this is true; but this group are also very involved in organisations and on committees advocating for their welfare, and also have a role in deciding what is best for our care.

Only a few discuss how hard it is for us, or more importantly, bother to ask us what we need. Last week I went to a workshop about Person-centred Care which highlighted how difficult it is for us to have others make decision for us. We were asked to write down the 6 things we valued most and share it with the others at our table. Then we were asked to delete the 2 least important to us. Then we had to give our list to the person next to us, and they deleted another 2. Then we had to pass our list with the remaining 2 most valued things to the facilitator. She then ripped them up and threw them in the bin. Everyone (except me) felt utterly devastated. This is what it feels like with dementia, and probably why my list was very simple as I have already lost many of the things the others had on their list, like driving.

My 6 most valued things were 1) independence, 2) independence, 3) independence, 4) being able to make my own decisions, 5) being able to make my own decisions, and finally 6) being able to make my own decisions! Advocating for ourselves, and therefore for all people with dementia is imperative, as it is the one thing that is likely to ultimately contribute to change in policy, appropriate use of funds, and it will open gateways to consumers who have not previously been listened to. Any amount of positive change will then encourage others with dementia to take the risk of speaking out; helping to build the momentum we will need to be asked to be involved, and to be listened to, and therefore to make real change. We can, we will, we must speak out and advocate for our own human rights.