It's good to welcome Margaret- Anne back from her holiday and it looks like she's returned on form and with vigour as she's written another great blog. Please take a few moments to read this.
Thanks to everyone who came along and supported the new allotment project this week. We planted out tomatoes, beans and cucumbers, and enjoyed a lovely sunny morning together weeding, digging and planting. We meet every Thursday from 10.30am- 12.15pm everyone welcome, why not pop down and see how we're getting on.
With best wishes
Sarah Russell, CEO
Margaret- Anne's blog 42: Changing cultures
In case anybody wondered I’ve been away on holiday in Portugal and so I haven’t written a blog for some time. I had a wonderful relaxing time but I’m sorry I missed all the things that have been going on while I was away – I had no control over the timing. Anyway I’m now back refreshed and relaxed.
I recently read an article by Teepa Snow in her online journal for May 19th. You can read it for yourself at www.TeepaSnow.com – following the links to “Changing a culture of care; It takes Movement”.
I’d really like to share it with you as what she has to say really resonates with me personally. It is an idea which has been around for about thirty years. I first heard of it from Professor Tom Kitwood with whom I worked in 1998 – the last year of his life.
He used to talk about the ‘old culture’ and the ‘new culture’ of dementia care. He adopted the idea of applying the philosophy of “person centred care” to people with dementia and I am pretty sure he was the first person to do so. His intention was to create a ‘new culture of dementia care’. In his terms the ‘old culture’ was based on what he called Malignant Social Psychology. By this he meant that people with dementia were treated as non persons – excluded from social groups and treated in ways which were totally dehumanising. These attitudes in turn sprang from the stigma and the fear and the deep ignorance about dementia which was the prevailing view in society at that time. This was reinforced by the nihilistic view of the medical profession which saw dementia simply as a progressive and incurable neurodegenerative disease for which there was no cure and precious little available to treat the symptoms.
I remember having a conversation with him in which I expressed my frustration about the slow rate of change and he told me that we were working to change a culture and that would take at least thirty years! It is like trying to turn an oil tanker round. It takes a long time, it can’t happen quickly, said Tom. Well it’s now thirty years later now and it is beginning to look as if that old oil tanker is finally starting to move.
Teepa Snow points out that we now have what she describes as “ a developing counter-culture led by people living with dementia in early states of changed ability and their friends and family”. Thirty years ago I don’t think we ever anticipated that this would be possible.
These people are “standing up and asking that the existing culture become more aware, that their continued abilities, their still present capacities, and their rights to be self-determining be recognized, unless or until it is proved otherwise”. She points out that there are wide variations around a response to diagnosis and the way people behave when the damage is still fairly limited. She points out that “we are not actually aware of dementia in ourselves or others until the symptoms become apparent…. Even after the symptoms are apparent to some people they are hidden from others.” Some people, as we know, as in denial – a psychological mechanism which we use to protect ourselves. But others are unable to recognise that there is anything wrong because of the damage to the pre-frontal cortex. Teepa Snow says that is called “Anosognosia”. Interesting I think. I hadn’t heard that before.
Basically Teepa Snow is saying that there is a movement developing to change the culture and that her organisation “Positive Approach to Care” is part of that movement. They try not to put people into categories based on their losses but rather “ try to attempt to understand what they are trying to share, do or communicate….We believe that the person is using the abilities that they are able to use in that moment. Abilities may be visual, verbal or sensorimotor in nature”. Yes! I think that is so good. She believes that any boundary between people not having dementia and people who are living with dementia is artificial. She is advocating for an inclusive culture where we, who do not yet have dementia “develop our own abilities to provide the support we are able and help the person and others find support in other ways when we are not able.”
I think that we in Tibbs Dementia are on exactly the same page as this. Through all our activities we are trying to put these principles into practice. We are very much part of this Movement which is now a global force and gaining in momentum. But the means we are using is different. We are very much community based. I have the impression that Teepa Snow is approaching these common goals using techniques which are very focused on teaching and supporting professional care workers and care partners through one off events such as conferences, online resources and webinars. Her internet presence is now large and influential.
We use a different technique. We are small and we are local. But we genuinely are a family made up of people with dementia, care partners, volunteers and staff. Because we strive always to be inclusive, roles will sometimes change. So sometimes you will see people with dementia are helping out at groups, some staff are initiating voluntary activities in addition to their contracted hours. Within groups, care partners are helping each other with practical suggestions as well as emotional support. Above all I feel that we try to ensure that people are genuinely respected and valued for who they are, as they are, whatever the state of their brain may be on that particular day. And this applies to all of us – whether we have dementia or not! There is no ‘Them’ and ‘Us’. There is only ‘Us’.
Changing a culture starts with personal change. Seeing things differently. This can be painful while we move through the transition but once we have really changed we will not be able to tolerate going back to the way we were. It’s exciting and important . Teepa Snow says she personally believes “dementia care will become one of the most important human rights stories of the 21st century”. I absolutely agree with her.
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Items can be obtained from any Tibbs service or event - or by contacting us direct.
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DIARY NEXT WEEK
* We know that you love coming to our services & events but, for reasons including health & safety and insurance, please don’t arrive more than 10 minutes before the start time. Thank you *
MON 3 JUNE
10.45-12.30
CST and Encompass
11.30-13.00
Walking Football
14.00-15.45
CST and Encompass
14.00-15.45
Music 4 Memory
TUE 4 JUNE
11.00-12.00
Swimming
Kempston Pool
12.30-13.45
Indoor Bowls
Kempston Indoor Bowls Club
13.00-17.00
1-2-1 Music 4 Memory at home
At Home
14.00-16.00
Kempston drop in with carers wellbeing session
Kempston East Methodist Church
WED 5 JUNE
10.30-12.15
*Flitwick Cognitive Stimulation and carers support group
Flitwick Library
14.30-16.00
Music 4 Memory
Potton Community Centre
14.00-15.30
Clear Voices 1 and 2
Dame Alice Court
evening course
*Support 4 Memory
Dame Alice Court
THUR 6 JUNE
10.00-11.45
Music 4 Memory + Encompass
Oakley Village Hall
10.30-12.15
Allotment Group
Mile Road Allotments
11.00-13.00
Activitea and Encompass self support group
St Andrews Church
14.00-15.45
Music 4 Memory
Parish Room Queen's Park
FRI 7 JUNE
10.00-11.45
Music 4 Memory
Community Centre Queen's Park
14.30-16.00
CST and Encompass
St Andrews Church
14.15-15.30
14.30-16.00
Activitea and Encompass
Park Walk
St Andrews Church
Bedford Park- Pavilion cafe
Please Note : Most of our services are open to all people with dementia and/or their families to just come along whenever you wish – although we would recommend you talk to us to check their suitability for you. However, services denoted with * are specialist courses with a fixed number of places, so please contact us in advance regarding joining these (and there may be a waiting list).
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