Some Blogs About Dementia You May Like
I’m always looking at new information around Alzheimer’s and dementia. Not so much the stories of new wonder drugs, because with my mum we’re a bit beyond that (although, every purchase of my book includes a £1 donation to Alzheimer’s Society as research is vital.)
On a day to day basis, I am interested in other people’s experiences, and what’s happening to benefit people who are living with dementia (particularly advanced dementia) right now.
This led me to this interesting blog ‘Let’s Talk About Dementia’ (not going to lie, the name draws me in, as I’m thinking ‘yep, that’s me’).
This post, headed up ‘Communicating Well with Dementia’ caught my eye. The post is centred around bringing couple together, one of whom in each couple is living with dementia, to better understand communication, as well as providing them with the support of each other.
I think dementia is particularly isolating for both the person with it, and their families and caregivers, so my comment was:
This sounds like such a great idea, especially in terms of bringing people together, as you can find yourself in such a lonely place.
Helping ongoing communication is the icing on the cake.
I’d love something like this locally (Oxfordshire, UK). Although I say my mum is uncommunicative, she is constantly talk-singing, we just don’t know what she’s saying, or how best to either get her attention, or communicate with her (or whether that’s even possible).
TIDE (Together in dementia everyday) are committed to supporting caregivers, and have several stories from people who are, or have, cared for someone with dementia.
Particularly pognant to me was the very latest story from Steve - "Would you ever put your mum in a nursing home?" as this is something we’ve already gone through, as a family. It’s notable that Steve’s mum got used to her new home quickly, and how Steve is feeling, 8 weeks in. The guilt he feels…well, I’m not convinced it goes away, even when you know for sure you have done the right thing.
This blog, from the University of Hull, drew me in, as it’s all about the language we use around dementia.
What really struck me is that the student is keen to not use ‘doom and gloom’ language (and there’s a lot of it around Alzheimer’s and dementia), but take a more positive approach. I would take issue here that words like ‘brave’and ‘fighter’ used around those living with cancer are liberating. From my experience, these can make people feel under pressure to portray a warriorlike approach they don’t feel they want to. However, the wording around dementia, such as ‘living well with dementia’, I love. My mum is living well with advanced dementia, and I think I’ll continue to use that positive phrasing, going forward.
Dementia Help UK are another organisation and resource for caregivers. If you’re caring for a loved one with dementia, I’d urge you to take a look. It was on their blog I saw the sad news that Tony Christie has been diagnosed with dementia. His approach is uplifting, it’s well worth a read, not least to hear about the single he has made alongside Sting and Nile Rodgers - a re-recording of ‘Thank you for being a friend’, in aid of Music for Dementia.
This also introduced me to ‘Thank You Day’ which I was completely unaware of, so I had to thank them for that!
I wasn't aware of this single, or even of Thank You Day, so thank you for that. It's also inspirational to hear Tony Christie taking such a positive approach to his own diagnosis, supported by Sue. I'll be seeking the single out.
Finally, I must talk about Wendy Mitchell’s blog - ‘Which me am I today?’ Wendy is living well with early onset dementia, and her blog is about her personal experiences. She’s also written two books from her personal experiences - “Somebody I Used to Know” and “What I wish people knew about dementia”. Both are Sunday Times bestsellers, and both are now on my ‘to be read’ list.
Her blog “Another Dementia Workshop….will it be different?” really got me. This is a woman striving to affect change and finding that very little changes. The absolute weariness is there, in the blog’s title. We absolutely need people like Wendy, hence my comment below.
This is so Interesting, thank you!
What particularly resonates is the idea of a 'crazy paving' design, not a pathway. It always feels people living with dementia are thought of as one, homogenous group, rather than individuals. There is no 'one pathway' that can possibly cover the unique experiences people are going through.
I also need to say thank you for attending, and trying, in the face of it seeming like nothing changes. Without people like you, things definitely never will.
