Advice

Using your experiences of dementia to have an impact with decision-makers

During Dementia Action Week in May, I attended a Cardiff event and spoke to Members of the Senedd (elected representatives of the Welsh Parliament) about my experience with dementia. 

We shared our hopes for the future of dementia care in Wales by adding our thoughts to a memory tree, so decision-makers could see and understand the hope that we all hold for a better future for people living with dementia. 

I also had the chance to share my story with the people who have the power to change things. 

Waning funds 

For years, I dedicated myself to improving my and others’ understanding of dementia, working as a conflict management training specialist in care homes. 

Everyone should be supported to feel safe and secure in their home, but as funding waned in the social care system, so did the availability of essential training. 

Delays and obstacles 

In 2021, I started to experience symptoms which made me question my mental health. My brain was like a computer that kept shutting down. 

I reached out for medical help but encountered delays and obstacles at every turn. The system I’d proudly been a part of had let me down. 

Despite initial scans suggesting I’d unknowingly had a stroke, I was left waiting for five months with no answers or support. Eventually, I received a diagnosis of dementia. 

For me, the diagnosis brought me clarity and understanding after being in the dark for so long. 

Hitting home 

Having the opportunity to talk to the people who make decisions about dementia diagnosis and care in Wales truly meant a lot to me. 

When you share real stories of how the lack of funding and attention dementia gets impacts your life, it starts to hit home. I can see they are beginning to realise why we’re calling for dementia to be made a priority. 

No one should be left forgotten like I was, forced to chase tests and doctors at an already scary time. 

Everyone deserves an early diagnosis and the support they need from day one.