Experience to influence: Alzheimer’s Society turns 40

Alzheimer’s Society was founded 40 years ago by people who had personal experience of dementia.

Even as the organisation has changed and grown, the perspectives of people affected by the condition remain at the heart of what we do. 

People with dementia, carers and former carers get directly involved in our work in many ways, such as reviewing publications, taking part in recruiting staff and giving us feedback on services. 

In Birmingham, a ‘reference group’ of people affected by dementia has been meeting monthly to help shape the development of our new service, Dementia Connect.

The reference group has been influencing how people are referred to Dementia Connect as well as the technology and language used in the service. 

Available in a growing number of areas, Dementia Connect combines face-to-face, telephone, print and online support and advice, and we keep in touch to make sure people get the right help as their needs change. 

In recent months, the reference group has been influencing how people are referred to Dementia Connect as well as the technology and language used in the service. 

Wider picture 

‘Sharing the voices of people is very important,’ says group member Eric, who has dementia. ‘It’s a good concept and helps to shape a big organisation like Alzheimer’s Society’. 

People’s motivations for getting involved in the group vary. 

‘It’s a way of transferring the experience we’ve got to the wider picture,’ says Ivan, who cares for his wife.

‘This group is a fantastic thing because it helps others, not only our family,’ says Anita. 

Jeremy, a former carer and one of the group’s newest members, says, ‘I helped look after my partner's mother before she passed away in February. There's an Alzheimer’s-shaped gap in my life, so I'm filling it in a way that gives me some continuity.’ 

Anita recently attended her first group meeting with her aunt, who has dementia, and her mother. ‘Dementia is difficult to live with,’ she says. ‘This group is a fantastic thing because it helps others, not only our family.’ 

Experts by experience 

The group is making a real difference to how Dementia Connect develops by being ‘experts by experience’. 

‘We’ve hopefully moulded it,’ says Eric. 

His wife Cynthia agrees. ‘You can have theoretical ideas, but there's nothing better than practical experience and examples.’ 

Society staff have reported back to the group about how their feedback is being used. 

‘We want Dementia Connect to be as high quality, inclusive and accessible as possible,’ says Kim.

Kim Nguyen, Project Support Officer for the group, is pleased that people are being listened to. 

‘We want Dementia Connect to be as high quality, inclusive and accessible as possible,’ she says. ‘The reference group is playing a real part in that.’