It’s not every day that a non-academic, non-researcher, “nobody” without a whole bunch of letters after her name gets an article published in a professional journal. When it happens to you, well, it’s something to celebrate. At least it is when that you happens to be ME! And especially when the subject matter impacts millions… Continue reading juiced and joyful over jamda
In June this year, I posted an open letter to the worldwide dementia care community. Since then, advocates and activists such as myself, including Dr. Al Power, Daniela Greenwood, Howard Gordon, Liz Lester, Leah Bisiani, Sonya Barsness, Dr. Chris Alderman, Kate Swaffer, and others, have joined forces to create an awareness and action campaign calling for the ban of the damaging… Continue reading 20 compelling reasons to rethink the way we label and medicalise the behaviour of people who live with dementia #BanBPSD
This is an open letter to members of the dementia community worldwide. ~~~~~~~~~~~~~~ Dear dementia educators, researchers, geriatric professionals, Alzheimer’s societies, associations, and organizations, and members of the worldwide dementia care community, My mother spent most of the last four years of her life in a catatonic state because the people who were meant to… Continue reading take off the blindfolds and #BanBPSD: an open letter to the worldwide dementia community
The more research I do, the more proof I have that the behaviours of some people who live with dementia that challenge those around them are not the result of dementia, but rather perfectly reasonable reactions to particular sets of circumstances. In early 2017, I began an anonymous online “survey” that is both a learning… Continue reading how would “normal” people feel if we did to them what we do to people who live with dementia?
On December 3, 2013, a year after Mom had moved into a long-term care facility (LTCF), I sent an email to the person in legal control of my mother’s care, and the Director of Nursing of the LTCF. It read in part: I am deeply distressed by Mom’s present condition. I have reviewed in detail the… Continue reading four years later is too late for my mom. but it’s not for others.
While researching my second JAMDA article, I came across a relatively recent paper by Dr. Jiska Cohen-Mansfield on the causes of discomfort in people who live with dementia (PLWD) in long-term care facilities (LTCFs). Cohen-Mansfield and her team developed a Sources of Discomfort Scale (SODS), as part of a larger study for the “Treatment Routes… Continue reading 101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging
In December 2016, my first-ever journal article (Efforts to Reduce Antipsychotic Use in Dementia Care are Starting to Bear Fruit, but a Lot of Work Remains to be Done) was published in the Journal of the American Medical Directors Association (JAMDA). A second article, the preprint of which appears below in its entirety, was accepted for publication… Continue reading the broken lens of BPSD: why we need to rethink the way we label the behaviour of people who live with alzheimer’s disease
Efforts to reduce antipsychotic use in dementia care are starting to bear fruit, but a lot of work remains to be done. (Accepted for publication by the Journal of the American Medical Association 161201; © 2016 under the CC-BY-NC-ND 4.0 license http://creativecommons.org/licenses/by-nc-nd/4.0/) Some people say the only way to manage behaviours and symptoms that have… Continue reading let’s get dead right about dementia and dangerous drugs
My Alzheimer's Story 