Survey report: Lived experiences of dementia 2025

Alzheimer’s Society wanted to understand the experiences of people affected by dementia across England, Wales and Northern Ireland.

We commissioned this survey, which was delivered by Walnut Unlimited, with the aim of uncovering these insights and to highlight where inequalities in experience exist, with comparisons to our 2024 survey.

3,487 people shared their experiences of dementia with us between February and March 2025. This sample consists of people with a formal diagnosis of dementia or living with symptoms of dementia, unpaid carers and people who know someone close to them with dementia. In addition, 15 interviews were carried out with a diverse group of respondents from the survey to explore some of the questions in more detail.

Key findings

The findings expose a system buckling under pressure and serious gaps in care, diagnosis, and public awareness – leaving too many families to cope alone.

42% of people with dementia felt ashamed or stigmatised to be living with symptoms.
46% don’t know who to contact for social care support, rising to 56% for unpaid carers and 62% for ethnically diverse respondents.
70% of unpaid carers report that their mental or physical health has been negatively affected, spending less time on activities they enjoy or feeling more isolated socially.

More standout statistics are shared below, categorised by the main themes of the survey:

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Experiences of dementia

Less than 2 in 5 survey respondents think healthcare or social care support for people living with dementia is important to the government.
73% of people with dementia feel anxious or worried to be living with symptoms of dementia while 42% felt ashamed or stigmatised to be living with them.*
1 in 5 survey respondents have not received any health or care support for the person they know or care for living with dementia.
70% of unpaid carers report experiencing a negative impact while caring for someone with dementia including their mental or physical health being negatively affected, spending less time on activities they enjoy or feeling more isolated socially.

Diagnosis

Only 31% of survey respondents agree that their experience of dementia diagnosis was positive.
72% of people with dementia and 63% of unpaid carers found the dementia diagnosis process stressful.
29% of people living or caring for someone with dementia symptoms but no formal diagnosis reported that they haven’t sought a diagnosis due to being worried about the impact of diagnosis on aspects of their daily life – in respondents who are ethnically diverse this number was significantly higher at 49%

Treatments and Interventions

Only 20% of those who know closely or care for someone with dementia know who to contact for healthcare support for the person with dementia.
29% of those who know closely or care for someone with dementia agree that dementia healthcare is easy to access.
74% of respondents with a dementia diagnosis report that they were offered a pharmacological treatment (a drug treatment) for their dementia. Of them, only 2% didn’t accept treatment and 79% reported they experienced benefits.*
65% of respondents with a dementia diagnosis report that they were offered a non-pharmacological treatment (a non-drug treatment, for example cognitive stimulation therapy) for their dementia. Of them, only 2% didn’t accept treatment and 85% reported they experienced benefits.*

Read the full report

You can download and view the lived experiences of dementia 2025 report here as a PDF.

View PDF report

What next?

For decades dementia has suffered from a lack of attention and investment. Alzheimer’s Society will use these findings to inspire governments, local authorities, communities and the public to take action.

Professor Carragher, our Chief Policy and Research Officer, has stressed that Alzheimer’s Society is calling for rapid improvements to dementia diagnosis and support.

For decades dementia has suffered from a lack of attention and investment. It’s been seen as too complex, too expensive, and too hopeless.
We’re leading the way by providing the evidence and delivering support to those who need it, but it will take a society to beat dementia.

Notes on the survey process

It’s important to remember that, as with any qualitative work, these results might not represent the experience of every person affected by dementia. They represent a snapshot in time and while the sample is representative across England, Wales and Northern Ireland, the experiences of some people may be different.

*The survey sample only included 74 people with dementia which is quite a small group, so we have to extend some caution to applying these figures directly to all people with dementia.

This is a similar number of respondents with dementia to our 2024 survey. We tried to boost this sample this year through activities including sharing the survey link on our Dementia Support Forum and targeted recruitment using the Involvement Database, which didn’t lead to higher numbers. We’ll review these activities and any other learnings to inform improvements to any further surveys we commission in the future.

This limitation only applies to those living with dementia, not unpaid carers or those who are close to someone with dementia who were well represented within the survey sample.