04/09/2025
Dementia is the biggest health crisis of our time and affects not only those living with it, but also their loved ones and carers.
Our Lived Experience Survey captures the voices of people affected by dementia, made up of those living with the condition, unpaid carers, and loved ones.
Just one third said that their experience of the diagnosis process was positive.
Long wait times and seeing multiple healthcare professionals are among factors that make the process difficult.
Two in five people with dementia feel ashamed or stigmatised.
As a result, many have not sought a diagnosis because of concerns about what their families and friends will say if they are diagnosed with the condition.
Seven out of ten carers for people with dementia say that caring has negatively impacted their lives. It has impacted on their mental health and made them feel more socially isolated.
One in five people affected by dementia have received no health care, social care or financial support.
Of those who received support, fewer than half were satisfied with it.
The findings expose a system buckling under pressure and serious gaps in care, diagnosis, and public awareness – leaving too many families to cope alone.
What has been your experience of dementia?
