For Dementia Action Week, Independent Lives spoke to Sandra, about her mum’s diagnosis of dementia and how Direct Payments have changed things for the better.

My mum has been living with dementia for a few years, but the Direct Payment has only been in place since February.

Prior this I was managing my mum’s condition remotely from Asia, where I worked for 15 years. We had her whole house set up and things were working very well.

But her condition worsened, partly due to poor agency care so I came back to England to look after her after COVID hit.

I was apprehensive at first because it was a big change, and I didn’t understand what I was doing because getting everything set up and structured is difficult. But Independent Lives have been excellent at helping me to understand my responsibilities and how everything works.

Previously, we were tied to another agencies support and the quality of care was poor.

Mum has calls for socialisation and because of her condition, it’s important that she sticks to a schedule, so if the care workers were late (which happened often) her schedule would be thrown off and it made things very difficult for her.

But now we have a team of three people, that all love and care for mum who can work flexibly.

They’re all people that would have helped mum for free to an extent, but the Direct Payment has enabled me to comfortably ask more of them because I’m no longer asking for a favour.

Now that I know mum is being looked after properly, it’s given me the chance to return to my job as I have so much more freedom compared to before. 

Things can still be hard, and we still take every day as it comes. But overall, it feels like a weight has been lifted.


To read more about Dementia Action Week, and to sign the petition to Cure the Care System, click here.