Rethinking Dementia by Catherine Charlwood

Rethinking Dementia by Catherine Charlwood https://padlet.com/CathyCharlwood/RethinkingDementia A virtual pinboard to accompany our Being Human event en-us 2021-08-05 09:26:32 UTC 2023-02-18 23:39:07 UTC hello@padlet.com Instructions CathyCharlwood https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1669863486 Use the + button below other posts to add your own to any column. The newest posts will be at the bottom of the column, so scroll down.

Type what you want and then click outside the box for it to appear on the Padlet. You can 'like' posts by clicking the heart button. You can comment on other people's posts underneath them.

Please ask questions if you're stuck and I'll help. You can always email IDEAL@exeter.ac.uk if you need further help.]]> 2021-08-05 09:30:36 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1669863486 Introductions CathyCharlwood https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1669864137 In this column you can introduce yourself. Who are you and why are you interested in rethinking dementia?

Be sure to book for our Being Human event 'Rethinking Dementia' on Thursday 18th November 2021, 7-8pm on Zoom. You can book a free ticket here: https://www.eventbrite.co.uk/e/166141179741]]> 2021-08-05 09:31:54 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1669864137 CathyCharlwood https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1688008325 Use this column to answer Question 1. There are no right or wrong answers!]]> 2021-08-20 14:39:51 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1688008325 CathyCharlwood https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1688010322 Use this column to answer Question 2. There are no right or wrong answers. Feel free to post a drawing if you are an arty person!]]> 2021-08-20 14:40:55 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1688010322 Understanding dementia CathyCharlwood https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1688013297 This video is a great starting point to learn new things about dementia. We asked people living with dementia what they would like people to know about it. Here's what they told us.]]> 2021-08-20 14:42:37 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1688013297 CathyCharlwood https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1688016132 Use this column to answer Question 3. You might think of films, books, adverts - the list is endless! We're interested in how people see dementia and where. It could have been a poster at the GP surgery - let us know below.]]> 2021-08-20 14:44:24 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1688016132 https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1753357873 I have Alzheimer’s Disease, but I don’t have ‘dementia’ although the world thinks I have. Let me explain:

‘Dementia’ technically is a term for people who have lost independence, who are in the more serious parts of their illness. But it has become a catch all term to cover all stages of progressive brain disease. One that’s widely used and understood.

But I worry that as soon as we say ‘dementia’ we summon to mind the high backed PVC chairs and the Vera Lynn singalongs. We don’t think of people living good meaningful and fruitful lives. People making music and videos, running their own trading courses and laughing (a lot).

I want to rethink (and rebrand) dementia. Do please join me.]]> 2021-09-20 08:50:28 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1753357873 https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1753365105 This was taken from a visual representation of a response to a consultation about social care..it’s what a group of PLWD (people living with dementia) don’t want. But I suspect it’s an image many folk bring to mind when they hear the D word - as did I before my Alzheimer’s diagnosis.]]> 2021-09-20 08:53:46 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1753365105 https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1753370862 I would love to put an end to what I call ‘misery porn’. You know, the video that shows the poor harassed carer struggling to cope without respite care. That shows dementia negatively.
My friends with dementia live interesting full and exciting lives. We have our challenges, but we strive to overcome them.
But of course positive pictures don’t raise money for charities, do they? ]]> 2021-09-20 08:56:42 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1753370862 Good morning. My name is Gerry King, I am 58 years old and was diagnosed with young onset Alzhiemers disease at the age of 55. People's perception of dementia, both professionals and in general, needs to change from the stereotypes portrayed over many many years. We are not PVC armchair warriors listening to Vera Lynn. We are Dementia warriors listening to Iggy Pop, The Stranglers, The Rolling Stones, Depeche Mode. https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1753457386 2021-09-20 09:39:34 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1753457386 Hello, I'm Dr Kellyn Lee, a Chartered Psychologist and researcher in ageing and dementia. Over the last 5 years I have develop Material Citizenship - a new approach to dementia care. This approach enables people living with dementia choice, control and agency, supporting them to maintain and demonstrate their identity, through every objects, living the life they want to live their way. Here is a link to an article that featured in The Guardian: https://www.theguardian.com/society/2021/jan/14/everyday-objects-people-with-dementia-quality-of-life-care-homes https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1792551927
Whilst Material Citizenship has been developed for care home staff, it also applies to people still living at home. For more information contact me on info@materialcitizenship.com

As well as this I am currently collaborating with a clinical psychologist with experience of supporting people with long term health conditions and their carers. We plan to develop a 6 week programme, and write a book, for carers of people living with dementia using the Acceptance and Commitment Therapy model. This will support carers to manage their own thoughts and feelings in line with their values and support them to live better with dementia. ]]> 2021-10-05 10:44:47 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1792551927 Here is a link to some short videos about Material Citizenship for people living with dementia: https://www.youtube.com/channel/UCtrBSh0rND-_TqU9HG3IhlA. https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1792556003 2021-10-05 10:46:46 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1792556003 Here is an academic journal article on Material Citizenship: https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13321 https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1792557508 2021-10-05 10:47:34 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1792557508 I think we have to rethink how we approach dementia - we tend to think about what people can't do rather than what they can. https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1819798992 When we do find ourselves thinking about what they can no longer do, we should redirect those thoughts to exploring ways to support them to gain similar enjoyment in doing something similar where they can. When I was young, people with disabilities were so limited in options, particularly around sport.....but just think about the scope of the Paralympics!! Dementia poses different challenges, but surely if we used the same innovative brainpower we can achieve some amazing solutions!]]> 2021-10-15 14:40:25 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1819798992 Hi, I'm Jane Ward, one of the panel for the Rethinking Dementia event. janeward2244 https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1819843466 I had an amazing few years supporting Mum while she was living with Vascular Dementia. She had such a positive spirit and a wicked sense of humour - but we also survived some really tough times, especially when she got an infection.

She was my inspiration for the work I do now around rethinking dementia!]]> 2021-10-15 15:00:23 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1819843466 Can I add a new image? This is how I tell myself I should think of people living with dementia. janeward2244 https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1819873208 I took this photo in 2013.
This was my Annemarie, my aunt in Canada who taught me how to Kayak in 1982 on my first visit to stay with her and my Uncle Ray.
On this visit she was living in a care home with a diagnosis of Vascular Dementia, but I had taken her out for the day to attend the memorial for Ray at a friend's lakeside home. I was a little concerned when she announced she wanted to go out in the kayak....but her Canadian friends seemed to think it was Ok. I did wonder how to explain to her care home if it all went wrong....but as you can see.....she not only knew exactly how to manage, but had a great time. This picture took pride of place on her door in the care home too remind the staff that she wasn't 'a daft old lady', and though she never again remembered I was her niece - she always remembered I had taken this photo.]]> 2021-10-15 15:13:58 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1819873208 lclare2_2 https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1852098119 I agree absolutely, and it’s interesting that you mention people with disabilities and the Paralympics. There has been a huge shift in thinking about disability. It’s not long ago that many people with physical and intellectual disabilities were unnecessarily confined in institutions, whereas that would be unthinkable now. We’ve learned that disability doesn’t reside inside a person. Unsuitable environments and unhelpful attitudes can ‘disable’ people - so if we turn that around and think of ways to ‘enable’ people, we can find solutions. People living with dementia are coming up with amazing solutions – see for example

https://www.alzheimers.org.uk/blog/life-after-dementia-diagnosis-guide-setting-reaching-goals

Rather than representing dementia as a ‘disease’, would it be more helpful to think about it in the framework of (dis)ability? Might that promote more of a focus on what people can do, or could do with the right support, and on finding solutions?

]]> 2021-10-28 17:58:59 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1852098119 lclare2_2 https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1852125448 Hi, I'm Linda Clare, a social scientist, clinical psychologist and dementia researcher who also has experience of supporting family members living with dementia. I've learned a lot from the people with dementia who've been involved in our research. I feel very strongly that we need to encourage different ways of understanding dementia to improve the experience of living with dementia.]]> 2021-10-28 18:11:38 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1852125448 Living with Dementia Toolkit launch CathyCharlwood https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1875188058 On Saturday 27th November, between 10am and 12pm we are holding a free event to launch our new toolkit. We'd love for you to join us either online or in person at The Forum on the University of Exeter campus. Click the link to book your free ticket!]]> 2021-11-08 14:20:04 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1875188058 Student: Balance https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1887985827 Notwithstanding the possibility that some could be affected by seeing / hearing negatives about dementia, a true, balanced picture must be painted. Not everybody is living and dying well with dementia, and it is often those who need the help most who are the ones who are ‘suffering’ the most. Suffering is the negative word that has been castigated by living-well advocates, but some / many people with dementia do suffer, and so do their carers. When trying to look on the bright side, we must not lose sight of those who are living badly with the effects of dementia. If everybody was living well with it, we wouldn't be talking about it. And we need people and media to talk of it.

]]> 2021-11-13 08:14:43 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1887985827 I agree Linda, if we are even going to start thinking about trying to change the term dementia for a different one, we would need to have a thorough consultation with as many people who have dementia as possible, and ensure it's done with people from all ethnic groups and ages, to get a wide view. Dementia is a difficult word because of the associations with the more sinister terms, demented and demonic. janeward2244 https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1888543419 2021-11-13 20:41:54 UTC https://padlet.com/CathyCharlwood/RethinkingDementia/wish/1888543419