Change the everyday

People with dementia have their say

People with dementia in Derbyshire are making their voice heard to inspire change in their communities, reports Living with dementia magazine.

Carol Hill.

A group of people with dementia in Amber Valley, Derbyshire have been sharing their ideas and experiences to make their communities more dementia friendly.

In an Alzheimer's Society project supported by the county council, eight people met regularly to discuss what they'd like to change in areas such as transport, doctor's surgeries, leisure facilities and shopping.

Take time

Carol Hill, 58, who has frontotemporal dementia, says people need to be more aware that not all disabilities are visible.

'It's fairly obvious that someone is disabled if they are in a wheelchair or have a walking stick, but not with someone like me who has memory problems,' she says.

'It would be nice if people were patient and took more time, rather than trying to rush you.'

Peter Scott, a 71-year old diagnosed with vascular dementia in 2016, wanted doctor's appointments to address his needs.

'You're only given a short period of time – they don't seem to realise that I'm not able to take everything in,' he says. 'I also need them to speak more slowly and in simpler terms.

'Nothing seems to be flashed up on their screen to say I've got dementia.'

The group was also clear that people can face different challenges.

'It was interesting that, although we're all labelled with dementia, we're also individuals,' says Peter. 

'Some had problems that others weren't experiencing.'

Voices heard

The group's work is being shared to make sure their voices are heard. Co-op supermarkets are including their comments in Dementia Friends information sessions, while their feedback about GPs has informed a Society guide for doctors to make surgeries more dementia friendly. The group's top five priorities for bus operators have also been presented to transport companies.

Helen Aldridge, our Dementia Friendly Communities Co-ordinator for the area, facilitated the group's discussions.

She says, 'For a community to become dementia friendly, the people living and working there need to have an understanding of what dementia is and what it is like to live with dementia, along with all the challenges that can bring.

'I'm relaxed that I've achieved something and somebody's actually listened,' says Carol.

'The voice of people with dementia has been at the heart of this project to ensure that real experiences are shared.'

Carol appreciates having her thoughts and suggestions taken on board.

'I'm relaxed that I've achieved something and somebody's actually listened,' she says. 

Peter adds, 'I'm quite happy to assist in making other people aware of what dementia is. It was an honour to have some input into everyday life for others and to have our say.'

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