Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 1

Welcome to the 1at  newsletter from YODA.


Our home at Hanson Lane Enterprise Centre.

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Welcome to our first newsletter. Unbelievably it’s been a full twelve months since we first opened our doors on October 6th 2017.
It’s been an exciting time, with our meeting group steadily growing into a close-knit group of friends, supportive of each other, but eager to look beyond our Friday meetings. These plans include campaigning for improved local services, greater awareness of the unique experience that is living with the challenges of Young Onset Dementia and joining with other dementia support groups\organizations in the fight for better human rights and parity with other disability groups.

A major Surprise for us has been the growth of our Facebook page. When first launched by Irene Drummond we anticipated little more interest than from other local groups and a few national dementia charities. We had imagined that the lack of Young Onset support was merely a national problem. We were so wrong. Our online membership now includes those living as far apart as USA, Australia & Africa. These ties have sought to increase understanding between all nations and have strengthened our resolve to fight for our beliefs in the right to a fairer system for us all and how best to achieve these aims.

During our first year we have formed especially close bonds with Calderdale Staying Well Project, Alzheimer’s Society and Memory Lane Dementia-friendly Cafes. We have been involved in the planning for Dementia-friendly Sowerby Bridge and are now part of 3 Nations Dementia Working Group (3NDWG) which aims to afford those living with dementia the chance to take part in training and awareness opportunities on behalf of Alzheimer’s Society. As well as being available for Dementia Friends sessions we are now starting to roll out a series of talks specifically targeted at Young Onset awareness.


A great step forward regarding our rolling awareness program will be the production of a play, based on the stories of two Yorkshire couples’ experiences of Young Onset. It is called “Don’t Leave me Now” and is the work of award-winning playwright Brian Daniels.

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Plans for Our Second Year

We will be leading in the campaign to have an Admiral Nurse service introduced to Calderdale. Currently although we are in a health partnership with Huddersfield, Kirklees has a robust team of specialist dementia-care nurses to which the residents of Calderdale have no access., This service includes a team dedicated to the needs of those with young onset. This disparity needs to be addressed as this unmet need contravenes our human rights and we will be working closely with Dementia UK as well as other groups across Calderdale to correct this.

We will we working to encourage a more person-centred approach to dementia care, instead of the current one-size fits all approach. We will do this by continuing to present the human face of living with dementia and so break down traditional assumptions.

Better information and services are needed for all at the point of diagnosis. Most people when told that they have dementia are merely advised to organise their personal affairs. Only one third are directed to Alzheimer’s Society for appropriate follow on support. We aim to liaise between all medical professionals and the Society to ensure that basic information is supplied to all that it is possible to live positively with a dementia diagnosis.


Our core meeting group.

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YODA is an age-appropriate, inclusive weekly support group who come together in a safe, friendly and non-judgmental environment. People diagnosed with early onset dementia can meet others similarly affected where important information about the condition is shared with compassion and great enthusiasm. Carers are offered a valuable life-line which makes them feel less isolated, vulnerable and more appreciated for the valuable work that they do. The group enjoys an intimate, loyal, relaxing and very sociable atmosphere where everyone’s opinion is valued.

Receiving a diagnosis of dementia is devastating to any family, but YODA warmly welcomes and supports new members, who are potentially still reeling from the shock. YODA offers helpful, supportive and genuine friendship in the distressing days following diagnosis. Very quickly you appreciate that you are not alone on this journey. The ability to laugh again is possible as you embrace the group’s infectious sense of humor and form strong support networks within this group of like-minded individuals. And last, but by no means least, although you are joining a group nobody ever thought they would be part of, you are guaranteed a big hug from everyone else, just to reinforce the fact that you are not alone.

Jean Westacott.


Thanks to Alexis Harbottle for the group photo and the design of our new logo.

A variety of volunteer roles are available within our organization. Should you wish to help us in our vital work please contact Julie Hayden.

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

YODA Facebook Page




 

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