Turning Up the Volume: unheard voices of people with dementia

Turning Up the Volume is the largest-ever survey with people with dementia to hear their views and experiences of what daily life is like.

Society isn’t listening to people with dementia – but we are

Turning Up the Volume: unheard voices of people with dementia is a report containing the findings from Alzheimer’s Society’s largest-ever survey with people with dementia to hear their views and experiences of what daily life is like.

This ambitious and innovative piece of research, conducted by Ipsos MORI, has people affected by dementia at its heart. Through their words you’ll hear the real story of what it’s like to live with dementia, or be an unpaid carer, in England, Wales and Northern Ireland today. It also highlights what the general public thinks and feels about the condition.

The report is based on four strands of research: a survey of 966 people with dementia; 32 in-depth interviews with people with dementia including those from different ethnic and social groups; an online survey of 500 unpaid carers; and an online survey of 2,356 adults aged 16-75 in the United Kingdom.

Sadly, our research findings demonstrate the gap that exists for some people with dementia between what they need to live well, and their day-to-day reality.

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

Key findings

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 . . .

A new deal for people with dementia

Many people affected by dementia that we spoke to told us of the positive impact they felt from being well supported. People living with dementia who use Alzheimer’s Society’s services were positive about their daily experiences. Indeed 68% said that they get out of their home nearly every day or every day. Only 8% said that others treated them worse since they have had dementia and 81% felt that they have a say in decisions about their care.

This shows that with the right support, it is possible to live well with dementia.

Unless action is taken today, many more people with dementia will lose their sense of identity, their independence or face a social care system that fails to provide the support they need. To make living well with dementia a reality for everyone, we need action from the state, society and the general public now.

Over the next five years, Alzheimer’s Society will:

Challenge those in power to create a long-term, sustainable system for funding dementia care.
Call on care providers to ensure everyone affected by dementia receives the support they need, throughout their dementia pathway.
Call on the public to unite with Alzheimer’s Society and create communities where no one with dementia is excluded and no one faces the condition alone.