We have been in sunny Scotland this week (yes, we brought the sunshine from Australia with us!!), and during the week I have spent a day on campus at Queen Margaret University with Professor Jan Dewing, also my PhD supervisor. I’ve also been ‘working’ on things for the Alzheimer’s Scotland conference which is on today, working on DAI related matters, or editing the manuscript of another book. This book will be released later this year in September during what we call in Australia, Dementia Awareness Month, which is known in other parts of the world as World Alzheimer’s Month.
My second book being published with Jessica Kingsley Publishers, is currently in discussions with them, but due to my various other commitments, will be a book to be released some time in 2017.
It was just two days before my first book What the Hell Happened to my Brain? Living Beyond Dementia came out in January this year, that Lee-Fay Low and I submitted the manuscript for our first co-authored book “Living with Alzheimer’s or another dementia: What next?”, with an Australian Publisher, and of course, on dementia, but with a particular focus on supporting Australians facing dementia in their lives or families, and including what and where to access services. We hope it will be a unique book, and I personally have spent many hours interviewing and talking to people affected in some way by dementia – families, people with dementia, researchers, service providers, doctors, nurses, paid carers, advocates and others. This was done primarily to inform the content of the book, as we wanted to cover as many topics as humanly possible, in the one place; I have no doubt we will have missed things, but we did make a concerted effort not to.
We wanted to know beyond what we both knew, “What do others want (need) to know if someone is diagnosed with a dementia?” and in line with the late Professor Tom Kitwood’s now famous line, “If you have met one person with dementia, you have done just that. You have met one person with dementia”. Even two people with the same type of dementia, have a unique and often very different experience, and every family or care partner has their own stories to tell, their own uniques experiences. If we want person centred care, then surely a resource or book needs to cover as many topics and voices as possible also?
One of the things my husband and I wanted desperately for the first couple of years after my diagnosis was one book; one that gave me as much of the information as we might need, in one place. Instead, I spent hours, weeks and years searching the internet, or receiving, filing and then usually losing things like Help Sheets. Help Sheets themselves are not always that helpful; they are not even remotely dementia friendly, as families facing dementia are already spinning, and especially for the person diagnosed, as Help sheets have been provided, on the basis you can read them, manage to file them, and all you want on that particular day, is information on one topic. That, for us, was never true.