There is no rhyme or reason to my thinking today, other than finding a recipe for my Project 366 Conversations and Recipes Page. I can’t find any of my blog drafts, cleverly but mysteriously filed away somewhere on my laptop, and can’t think of anything interesting to write about so I’m doing a bit of NaNoWriMo style writing, but taking the time to edit. Writing about incontinence yesterday brought some interesting responses, and I was glad to have raised an issue that is so important. The almost daily writing about dementia and all of the issues surrounding it does take its toll, but they continue to inform my husband about my world, and he says assists him in being thoughtful in the way he responds to the various issues and changes brought on by the symptoms of dementia. We both reap the reward of me baring my soul, which makes it worthwhile and motivates me to keep going. I have been thinking a lot about the role of the carer and how much focus there has been on this person over the years. Alzheimer’s societies started as small groups of carers, getting together to support each other. Christine Bryden, an inspirational Australian woman now in her early 60’s who was diagnosed with dementia when she was a single mum aged 46 with three children, began meetings that included people with dementia. It has taken a long time, but our voice is now being heard all around the world, although occasionally I get the impression it is being accepted with some difficulties, as if our voice is not as relevant as that of a carer, service provider or researcher. I am about to apply to be on a committee and out of 20 people on this new group, there will only be 3 people living with dementia representing us. In contrast, there will be 10 carers or past carers. It might seem okay to others, but to me, this seems to be a very lop sided representation of this group of consumers; the voice of those of us with dementia is often compromised due to the symptoms of dementia, and therefore a higher number of people with dementia representing them as a group would be more reasonable. If not higher, then at least equal. We are a long way from having a level playing field, but we have come a long way. People with dementia who present well in spite of the disabilities of dementia and who speak out publicly, are still being challenged about whether they have dementia. Even though it is general knowledge that none of us, not even the doctors who diagnose us, can say 100% that we have it unless they take a biopsy from our brain. It is imperative we speak loudly, and find ways to continue to speak clearly, so that as a group, we become united and well represented, fighting for changes to service provision and funding, and to attitudes and stigma and discrimination. Richard Taylor also says we must stand up and speak out, and he says in his latest newsletter “I am looking for like-minded, close minded, and/or persons of interest who will join me on one of my crusades. Now that I seem to have the formatting of this under control I’ll send more of my writings to you on an occasional basis. I am interested in your reactions, opinions, etc. to my writings/experiences. I am looking for opportunities to speak. Feed back, and opportunities to work with others who also daily confront the symptoms of dementia is welcomed by yours truly.” In Scotland, people with dementia have a loud voice, and have a group called the Scottish Dementia Working Group, that celebrated its 10th Anniversary in March, and they make tsunami sized waves regularly, as they advocate and lobby for improved care of people with dementia. I am proud to have joined forces with these people and others as I speak out as an advocate and lobbyist for dementia and aged care, and am thrilled there are others who are joining the conversations here.