Lancashire Dementia VoicesLancashire Dementia voices was set up in 2012 by Alex Burton who was diagnosed with altziermers in 2011. Having nowhere to turn to for support he looked at other peoples situation and realised that the only support was from the Alzheimers Society via its dementia cafe. At that stage only one small charity existed for younger people who where diagnosed to understand the issue facing us, unfortunatley this was based in Oxfordshire.
He also realised that many health organisations didn't really fully understand the complexities of life with dementia so he set of looking for other volunteers to try to get the general population to understand the complexities of the condition and actual what sort of help was needed rather than that which was decided by health organisations across the county.
The group has gone through many changes and as it was entirely made up of people with dementia and carers it was inevitable that many succumbed to late stage dementia and as a consequence couldn't participate any further.The group took a year of and is currently rebuilding itself along with developing the new Lancashire and Cumbria deep network.
It worked directly with the NHS Strategic Clinical network until it was split into 2 separate regions in 2016 building a unique partnership between the group and the NHS supported by an emerging deep network it challenged the belief that once you had dementia life was over.
We designed and developed the very first dementia hub idea which we ran a pilot study for 6 months, this has now been copied and replicated over 2 counties, bringing together services on one day at one location.
It still campaigns vigorously but sadly as we found when we started little has changed in the way people affected are supported part from the great work individuals do and some organisations. However many more organisations have jumped on the bandwagon claiming to be dementia friendly! whatever the means ,help us to break down these falsehoods and camping for a better deal