Turning Up the Volume: unheard voices of people with dementia

2. Key findings

Turning up volume infographic 2

  • Almost half (48%) of people living with dementia worry about becoming a burden
  • Over a quarter (27%) of carers for people with dementia feel “cut-off from society”
  • 41% of the public disagree it’s just as easy for people with dementia to play an equal part in society as anyone else
  • Only 17% of carers agreed that 'there is enough support available for those who care for people with dementia'

Key themes from the research highlight that a stigma around dementia; some people living with the condition believing the public don’t understand their symptoms, or how to interact with them.

'A lot of people don’t want to know about it, because they don’t want to think that they may get it. It has a bit of a stigma, doesn’t it?' - Person with dementia

People living with dementia can feel like they’re losing their identity. Some people we spoke to said they were aware of their abilities fading which can have profound emotional and psychological consequences. 

'You feel like you have lost your identity. You’ve lost the person who you are.' - Person with dementia

Some people with dementia worry about their finances and the future as dementia care can be expensive and hard to access.

'Yeah, once I get to that stage I’ll have to have people getting me out of bed and people putting me to bed, and the cost is enormous I would fear.' - Person with dementia

Many unpaid carers make significant sacrifices, sometimes with no help from statutory services, to be a lifeline for their loved one with dementia. 

'No one from mum’s psychiatric team said to me, ‘what about you’? I had to say, ‘what about me?' - Carer of person with dementia

But it doesn’t have to be that way . . .

For information on the methodology and sample size of this research please see our data tables