Dominic Carter, Senior Policy Officer at Alzheimer's Society, describes work to turn up the volume on the voices of people with dementia.
Society often fails to listen to the voices of people affected by dementia. Alzheimer's Society has responded by carrying out our largest ever conversation with people with dementia.
Our recent report - Turning up the volume: unheard voices of dementia - is a unique look at what it is like to live with dementia today, based on what we were told by the people who know best.
It shares the stories of people affected by the condition, dispelling myths and presenting a realistic picture of their day-to-day lives.
We gathered evidence over several months in partnership with Ipsos MORI, the market researchers. We did this through a large-scale survey of people with dementia, in-depth interviews with people affected by dementia, and further surveys of carers and the wider public.
Of the in-depth interviews, 32 were conducted face to face with people who have dementia in locations across England, Wales and Northern Ireland, and five were over the phone with carers. This meant that nearly 4,000 people shared their experiences and views to help us build an overall picture.
'I won't answer the phone and I don't answer the door unless there is somebody coming who I know.' - Person with dementia
Worryingly, the evidence told us that some people with dementia do not get the support and understanding they need to live well on a day-to-day basis.
It revealed how ingrained views and misconceptions, among both the general public and people affected by dementia, can make life more difficult for people who are diagnosed with the condition.
'A lot of people don't want to know about it because they don't want to think that they may get it.' - Person with dementia
The impact of symptoms and a lack of appropriate support can lead to people feeling that they can no longer do the things they love. This can affect their sense of worth, self-identity and feelings of isolation.
Others described how they or their carers often find professional care hard to come by - and they then have to shoulder the considerable cost of this as well.
However, some people with dementia said that when they were supported well, in part by Alzheimer's Society services, then they can live well - continuing to do the things they enjoy, remaining connected to their community and seeing the people they wish to.
We need change so that more people can experience these benefits. That is why the findings from this work will inform our strategy over the next five years. By uniting against dementia, we can all make a difference.
We can be clear about what is needed from government and from society, but we also need your continued involvement. By uniting against dementia, our movement will help to find a cure, improve care, and offer support and understanding to everyone affected.
'Remember yesterday, look forward to tomorrow, live for today.' - Person with dementia