No, I am not just over-tired or feeling a bit burnt out, but I am getting very annoyed at having to continually ask why, yet another group organising an event has published a list of speakers (yes, again), the topic of Consumer Directed Care, and yet, did not bother to invite a speaker with dementia, the very cohort…
Well, my name is Kate Swaffer I am not very tall My hair is short and slightly greying Very fine hair that I prefer is blow dried every day to give it some shape. My husband and two sons are my best friends And I am lucky, I have other special friends Many new ones…
This week my position as the second person living with a dementia on the World Dementia Council was formally ratified on the morning of February 25, during my first meeting as a member with the Council in London. I feel honoured and proud to have been invited, and to be able to represent the members of…
Sometimes I get it wrong Sometimes I get it right Sometimes things I do or say upset people Sometimes I am misunderstood Sometimes I misunderstand Sometimes I am struggling more with dementia than on other days Sometimes I am unwell with other health issues Sometimes I am happy Sometimes I am crying or sad But always…
I cannot claim this is what most or even many people with dementia would want their families and friends who no longer support them or visit them or spend time with them since being diagnosed with dementia to hear… A great many of us with dementia no longer have ‘active’ relationships with them, although we…
Umberto Eco wrote a book La ricerca della lingua perfetta nella cultura europea (English: The Search for the Perfect Language in the European Culture; trans. James Fentress) in 1993, and is a book on a relatively marginal theme in the history of ideas. Whilst I have not read it since it first came out, I thought of it after…
“Planning Ahead is about taking control of your future. It is about putting things in place. It means that your choices will be known and acted on if you cannot express them yourself at some time in the future. This may happen if you have a sudden accident, become very ill or develop a condition that…
This quote by Harry Urban, and who also openly and honestly says he has bad days some of the time from his diagnosis of dementia, writes a fabulous blog about the reality of his world, including the less than positive moments, but also how he is, and you and others can, live positively with dementia and…
Today I am totally off topic, off genre, and off most other things, but felt like a bit of a rant about a few things!! Apologies in advance… perhaps give up now or you may regret reading this blog!!! Ok, perhaps I shouldn’t complain, as after all, I did wake up today, but I have always believed…
I continue to strive to achieve this every single day… Sometimes I fail, on others I succeed.
In 2014 I wrote a blog called there is big money in dementia. I’ve just re read it, and also the many comments made by some of my wonderful blog readers. I am constantly reminded about this problem, and whilst we need a thriving industry to better support people with dementia and our families, it…
It is normal for some relationships to deteriorate into power struggles over who is right and who is wrong, but it does not seem so okay when it is power struggles and egos of people without dementia who don’t appear to want people with dementia to stand on their own two feet. In my thinking…
Yearning for university Almost from my first day at school Nursing came long instead Long before that became a degree Like an escape And still no university for me And in spite of this Many other things were achieved and accomplished Life now with dementia, and Incredibly, university has become part of my life At least for…
There has been an ongoing debate in the dementia community about language, now for many years, and even though there are ‘dementia language guidelines’, I have regularly been told by researchers, universities, service providers and others without dementia, “but we don’t have to use them, they are after all, only guidelines!” Family care partners often…
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