By Karen Barber
The 10-Year Fight for Answers:
After 10 years of exemplary promotions and appraisals in the civil service, I was dismissed due to poor performance caused by a disease that took a decade to diagnose. It was a relief to finally get that diagnosis. Even though medical professionals told me it was all in my mind, I knew something was wrong.
Falling Through the Gaps:
After attending a cognitive therapy course at the Kingswood Centre in Colchester Hospital, I found there was no support out there for people of my age; I simply did not fit into the more senior groups. There is such a gap for people with young onset dementia, and it is unacceptable that we are just being forgotten. I decided to help others like myself who fell through the gaps without the support we needed.
Building a Vision with Community Partners:
I am so grateful for the community partners who understood the need. The Stroke and Wellness Foundation for hiring us a hall, and Sports for Confidence who designed our logo and poster when we had no funds. To CVST who when I contacted them believed in the project, my vision, p
assion, and ambition, they are a true example of how a voluntary service should work by helping with advice, policies, and providing my excellent volunteers, who have worked tirelessly and with all this support we have made it a success. Together, we opened the Young Minds Dementia Group and secured grants from Grassroots, the Tudwick Foundation, and the Essex Foundation.
Speaking Out in Parliament and the Media:
Our group is steadily growing. I am speaking out not for myself, but for everyone out there who does not have a voice. I’ve raised awareness on ITV Anglia, in Alzheimer’s Magazine, and an upcoming Daily Mail article. In May, I was invited to speak in Parliament, where I made our message clear:
Dementia needs to be a medical condition not a social care issue… We will not be silenced, we are valued members of society, yet for far too long we have been forgotten. We are the nation’s untapped capital, not a burden to be managed.”
My Vision for the Future: It shouldn’t be on people like me to establish these groups to make our own support. Unless action is taken, the vacuum of care will only deepen into a social catastrophe. My vision is to get charity status and funding to see Young Minds Dementia Groups across Essex, rectifying this inequality so that we are finally seen, supported, and valued. I couldn’t do this without the support of my excellent volunteers and community support of CVST and so many organisations in Tendring. I thank you all for believing in my vision and for not letting those with young onset dementia be forgotten
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