Giving people with dementia a voice

A group of people with dementia and their carers have been meeting at Halifax community fire station to work to improve dementia services in Calderdale and the lives of service users and carers.

The group was set up 18 months ago to empower people with dementia and their carers with a voice so they can express their thoughts, concerns and views. As well as health professionals, members of the fire service and the police often attend the meetings to give information and advice on safety issues.

‘The members of the group get a lot out of coming to the meetings,’ says Elaine Struck, from the community mental health team. ‘It helps them to focus on issues that concern them and they feel as though they have somewhere where they can voice their experiences of services. They let us know what improvements they think should be made – having that voice really helps them.’

Recently the group wrote to local MPs to express their concern over national guidelines to withdraw certain medications for people with Alzheimer’s disease.

They were also involved producing a pen pot for GP’s containing information about dementia and what symptoms to look out for in patients. It encouraged doctors to screen patients to rule out any physical causes for symptoms before referring them to dementia care services.

Members of the group are very active in other carer’s organisations helping to share information with carers throughout the region. One carer recently gave a talk to trainee GPs on what it’s like to be a carer.

‘I enjoy coming to the group I learn a lot from other people’s opinions – it’s very valuable,’ says Brian Rothwell, a member of the group. ‘I always give my opinions and share things with the group where I can. Hopefully the work of the group will help people to understand dementia and not be scared by it.’