For many years, I have been saying that people with dementia should be paid just like everyone else. After all, there is big money in dementia, and this particular industry is getting bigger. And it often still seems to be more about Purse Centred Care than Person Centred Care. People with dementa are living with…
Two years ago I published a series of blogs focused on the need to rethink dementia care, to reframe dementia entirely, on dementia as a major cause of disability, but most especially on the need to ban BPSD (Behavioral and Psychological Symptoms of Dementia). The Coronavirus pandemic has almost proven BPSD is a false construct,…
A sense of loneliness So deep It takes my breath away Reminding me of those departed Lingering inside my heart Lost to the stigma of dementia Tales of despair Whisperings of days gone by Deteriorating abilities Sadness Sitting just inside my soul Yearning for myself Kate Swaffer 2014
Dementia and me What the hell happened to my braindiagnosed with dementia when I was much too youngmy children still at schoola deadly terminal disease effectingmemory, thinking, perception, judgment, language and speech But worse than that, effecting mylife, family, friendships, my sense of self, my identityand a bucket load of guilttruckloads of stigma discrimination and…
During Dementia Awareness Month 2020, I’ve been publishing a blog every day, and trying to cover some different topics. Some are quite contentious, but I believe need to be talked about. The status quo in advocacy is driving me a little crazy… Anyway my daily blogging is unlikely to make a difference, but it at…
“Dementia care is caring for people Who often do not know they need care, And don’t want to be in care; No wonder they may become angry and upset.” Author: Kate Swaffer © 2012 #BanBPSD Also published in: Love Life Loss, A roller-coaster of poetry (2012) Graphic Print Group, Richmond, SA and “What the hell…
It is day 4 of Dementia Awareness Month (in Australia!) #DAM2020, and I thought it might be useful to focus on the factors that researchers now know reduce the risk of getting dementia today. The one ‘risk’ of doing this, is that people with dementia may start to be blamed for getting dementia, and this…
It is Day 3 of Dementia Awareness Month here, #DAM2020 and my blog is a recording of a presentation given by Assoc/Professor Lee-Fay Low on 15 August 2019. Lee-Fay is a friend and colleague helping to reframe dementia. I only saw the recording recently, and it’s given me much to think about, and to do!…
Apologies this post was accidentally published yesterday, when is was meant for today, day 2 of #DAM2020! Arrgghhhh! It is easy to hit the wrong button! Anyway, onto much more important things. The need for everyone to rethink dementia continues to be highlighted in the many stories of neglect, abuse, restraint and deaths in Residential…
It is day 1 (in Australia) of World Alzheimer’s Month, which many of us prefer to call Dementia Awareness Month #DAM2020 to help prevent people with a dementia other than Alzheimer’s Disease (AD) feel excluded by the campaign. It’s been a long haul emotionally and physically lately, with many personal stresses, and a recent major…
Early today I joined a Twitter chat for the release of a book by my good friend Dr. Shibley Rahman @ShibleyRahman titled Essentials of Delirium. It was hosted by another friend in the UK, @DiverseAlz and if you are on twitter, you jcan follow the feed via the hashtags #DeliriumEs and #DiverseAlz To kick off…
An Australian organisation called Beyond Blue which is focused on supporting mental health said in a recent article it: “Recognises and understands the feelings of anxiety, distress and concern (BPSC-19) many people may be experiencing in relation to the coronavirus (COVID-19) and offers some advice on how to look after your wellbeing.” Beyond Blue is…
It feels important to (re) acknowledge the challenging nature of these times and I do sincerely hope you are all safe and well. I also want to thank those who have reached out to me at this time of deep grief, here, on social media and by phoning me or calling in. Words do not…
In 2016, I was interviewed by Jessica Kingsley Publishers JKP), soon after the release of my book, What the hell happened to my brain?: Living Beyond Dementia. This is my response to one of the questions: Q: What would be your best piece of advice for others who are living with dementia? A: My advice…
In March, when I started this blog I went out to the clothes-line to get in some washing (mostly my underwear), and the line was empty. I went inside and thanked my husband for bringing in the washing, but also felt a little confused, as he would not usually put my clothes away, and I…
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