Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 2

Welcome to the 2nd  newsletter from YODA. Since our last edition we have played host to a successful production of “Don’t Leave Me Now” by Brian Daniels.

YODA Facebook Page


December

YODA2.1

Just after the showing of the play I was lucky enough to be invited as a delegate for Dementia Alliance International (DAI) to a three-day conference in Brussels regarding Protection of Vulnerable Adults (POVA) legislation. It is so important for all organisations, large & small, to work together at every available opportunity towards our joint aims. Above are my colleagues, Howard Gordon & Kate Swaffer (CEO).


March

YODA2.2

In early March we embarked on our first group holiday together on the island of Anglesey. Unfortunately, the weather did not stay as kind as the above image suggests, but it provided us with a good opportunity to bond further as a group, rather than two snatched hours in our weekly meetings, which are never enough.

Dementia Services

In common with the rest of the rest of the UK, Calderdale currently finances all its dementia services under the label of “older people’s services.” Given that not everyone with dementia is elderly (the youngest person in UK diagnosed with Alzheimer’s Disease was in their late 20’s) this is clearly an inadequate system. We at YODA have already begun to work with our local commissioners in order to redress this balance. We are at the start of a series of meetings with the Calderdale Commissioning Group. Some changes are being put into immediate effect whilst others will happen over time. Watch this space for further news and we’ll keep you updated in further newsletters.


January

YODA2.3

We are now happy to announce that we are members of DEEP, which is an important network to empower people living with dementia. Together we will be a stronger force in influencing changes that make a real difference in the lives of those living with dementia, in particular, those living with young onset. February saw our 1st representation at a Yorkshire DEEP meeting in York. We look forward to many more.

Our involvement with DEEP enables to become Dementia Diarists, to which we have begun regular contributions. These are recordings of those living with dementia, giving others an opportunity to glimpse into our experiences as we navigate our way along this new journey.

YODA on Dementia Diaries


Dementia Friendly Communities

It is an important aim to ensure that the public at large become aware of all types of dementia and how best to enable both those with a diagnosis and their supporters to live to the maximum. We at YODA are strong promoters of this and endeavour to educate others at every opportunity. We have approached this in talks we have delivered to community groups; Dementia Friends awareness sessions delivered and are now taking part of a newly formed committee to make Calderdale a more dementia friendly borough. To this aim, we would encourage as many others living with dementia and their care partners to become as involved as possible in making this a reality. You are the lived experience experts in dementia. Truly dementia friendly communities are impossible without your valuable input. To coin a phrase regarding dementia support planning, “nothing about us without us.”

Coming Year

The coming year will see us working towards all the above projects as well as the establishment of a financial framework for YODA, thanks to help of our new treasurer Rachel Swaby. We will continue our association with Bradford University and their dementia studies programme.



 

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