I was privileged to attend the ‘You, me, memory and dementia’ Conference run by Carers Bucks, The Alzheimer’s Society Memory Support Service and Buckinghamshire CCG.
There was a full house to hear Wendy Mitchell, international author, speak. She lives with early onset dementia and tries to live life to the full. Rather than dwelling on what she has lost, or on the future, she instead celebrates the here and now. She would encourage consultants, amongst others, to use positive words to generate positive wellbeing.
The psychological effect of words should never be underestimated… If negative words are used, you can end up believing them.
She spoke of trying to “outwit dementia; like a game” whilst emphasising that everyone’s journey is different. There is a misconception that dementia is just about memory, but so many senses are also affected. Wardrobe doors can look like walls so those living with dementia might not know there is anything behind them. It was suggested that a photo of a neat rail of clothes stuck to the door might help as a sign. Alternatively, hallucinations can mean items might temporarily disappear, or things that aren’t there are as clear as day. Wendy said taking a photo of something to prove it’s there or not there might help; “the camera never lies!” she added.
Wendy also said how she tries to stay active physically and mentally. She enjoys typing her blog daily. Using a phone is too frustrating now but she Facetimes instead. This allows both parties to read each other’s faces as the conversation progresses.
Wendy says she copes because she’s a ‘glass half full’ person. She’s grateful for the amazing opportunities she’s had because of dementia. Not only has she written a best seller, but she’s had tea with Julianne Moore, star of ‘Still Alice’, and has advised those producing the current stage version. She’s promoted awareness of the condition in the House of Commons and has made films with the BBC. She grabs opportunities but emphasised that
“we need positive support from those around us including healthcare professionals.”
More local people who live with dementia, and some carers, then took to the stage to speak. One told us of her thoughts via a poem. Another said that a group specifically for those living with early onset dementia would have been more helpful than the general group they first attended. A carer told us about her frustration at managing 13 different professional bodies – many part of the NHS – who don’t talk to each other.
After lunch, we were treated to three songs sung by the Carers Choir. They find great comfort in the songs, and each other’s company. So, if you feel you’d like to join in, they’re always looking for new members.
It was then to the turn of the audience to feedback. They too reiterated how the support of groups run by Carers Bucks were especially helpful, particularly if they were targeted. Again, and again though people said they felt there was no join up between the Memory Support Service / consultant and life after diagnosis. They felt that they were just told to get on with it on their own. They didn’t get the right information at the right time. Indeed, many in the room were unaware of services that were in existence that might help them. In the future, they said, the emphasis needs to be on one point of contact to allow carers, or those living with dementia, to ring one phone number to get all the information they might need at whatever point they were on their journey.
We will all be watching for how dementia services in Buckinghamshire will evolve as a result.