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Janis's Story for Dementia Action Week - "We all have a voice and the right to speak our truth"

After my husband died, I lost all my confidence. All those years spent caring for him with Young Onset Dementia had taken their toll on me. Never in a million years, would I have imagined myself as a public speaker…. And yet that is just what I did.  tide offered me an opportunity to speak at the opening Plenary at Dementia Congress, so I took it. I spoke to 500 professionals with the aim of improving their understanding and helping to change their attitudes towards people with dementia and their carers. I felt it was so important for professionals working in Health and Social Care to hear from unpaid carers about their struggles. As a bonus, it also gave me the biggest boost to my confidence I've ever had.

This was only my third time public speaking. I was terrified! But I received unwavering support from tide. I feel so lucky to have attended their insightful training events on their Carer Development Programme. They taught me the value of my experiences and helped me to find my voice (we must never forget – we ALL have a voice and the right to speak our truth). They really gave me the confidence to tell my story, and this is something that will stay with me forever.

Tide was with me every step of the way. Four other members from tide were in the front row and encouraged me throughout my whole speech. I spoke about both mine and my husband’s human rights and how at times they had been overlooked. The feedback afterwards was so encouraging. I was approached by so many of the audience members. One Regional Care Manager told me she would go back to her staff and tell them our story and she knew it would change attitudes. It was so heartening to see what changes were being made in the minds of professionals and what changes they would go on to make to dementia support and services.

I would tell every unpaid carer of someone with dementia to get involved with tide. People want to listen to you and learn from you. Only through unpaid carers telling their stories will they influence current and future dementia care and support practice. I know this can be scary at first but the more you speak out the more your confidence builds. I found the whole experience so cathartic. I truly believe it helped me heal from some of the trauma that I think all carers carry with them.

What I found, when telling my story, was that when people empathised with my experiences it validated all the things I was feeling, whether that be frustration, exhaustion or grief. I think every carer needs this. The experiences of unpaid carers are too often overlooked or dismissed. I always emphasise the point that a dementia diagnosis is given to the whole family and that the carer is an expert by experience and a partner in care. We should be recognised as such.

For anyone who might think that getting involved in influencing and campaigning isn’t for them, I would remind them that tide has a range of ways to get involved in this work. Everyone has different skills and tide is fantastic at helping you hone those skills and identifying opportunities for you to undertake that fit you as an individual.

I was quite a shy person. I wasn’t someone who ever spoke up in meetings. I never for one second imagined I would up on stage speaking to over 500 people! But with the right training and the endlessly encouraging support I found with tide - I did it.

And it didn’t stop there. Since then, I've had so many opportunities with tide to speak to professionals, people living with dementia and other carers (including being a member of their advisory group and being involved in the planning of the National Dementia Action Alliance annual conference). I've been lucky enough with their support to create a new and interesting life.

tide sees the value of carers and they made me feel like my caring experience matters. Developing this belief in myself was the first vital step towards being able to use my story to create the better future that all of us deserve.

"tide taught me the value of my experiences and helped me to find my voice (we must never forget – we ALL have a voice and the right to speak our truth). They really gave me the confidence to tell my story, and this is something that will stay with me forever."

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