There is no one size fits all when it comes to dementia carers. This is hardly surprising as one in two of us will either become a dementia carer during our lifetime or require dementia care ourselves.

Our survey findings show an even split of people caring for a spouse or partner and people caring for a parent. This was also reflected in our 2024 survey findings.

The intensity of people’s caring experience is clear with over half of all respondents caring 24/7 and nearly two thirds of respondents indicating that they have been caring for over three years.

We know from our 2023 survey findings the different activities that dementia carers provide support with from managing finances and medication to providing personal care and enabling social interactions. We know that these tasks and responsibilities can present daily challenges.

In our 2025 survey, we explored more about the impact of the needs or behaviours of the person someone is caring for on their carer.

We wanted to get into more depth about why carers might feel upset or frustrated or unable to keep caring.

Difficult behaviours that dementia carers can experience range from a lack of understanding, courtesy and respect to someone refusing any help and support from outside, to managing unsafe situations and sometimes feeling at risk of coming to harm.

Nearly three quarters of respondents said that they often felt unable to keep caring.

One in two dementia carers do not get any support. This mirrors last year’s survey findings.

Despite every dementia carer having a right to a Carer’s Assessment, less than half have received one and of those who did have one, less than half had any follow up afterwards.

Last year, we highlighted that three quarters of dementia carers didn’t have any plans in place if they were unable to care. This year, the proportion has increased to four in five. Over 80% of respondents do not have any alternative care arrangements set up.

For dementia carers of working age, there is clarity around what support they need from their employers – namely, understanding, flexibility and paid Carer’s Leave.

One in five dementia carers who were working have left employment due to their caring responsibilities.

Over half of all respondents said that caring had negatively impacted their finances.

Yet again, some dementia carers shared that their physical and mental health is deteriorating in a way which they think will impact their ability to provide care.

Four in five dementia carers have reached crisis point at least once and one in five dementia carers is reaching crisis often.

Our survey explored some of the factors behind people reaching crisis.

Most carers don’t think they could have planned for a recent crisis or that it could have been prevented.

Most didn’t receive enough support to get them out of the crisis and for the majority, the crisis ended but wasn’t resolved. Carers are worried the crisis will happen again, and don’t feel prepared for it or for another crisis which may arise.

Dementia carers are clear about what could make a difference to their ability to cope:

We’ll be sharing our survey findings far and wide. We’ll be in touch with elected politicians and people who are making decisions and recommendations about health and social care funding and resources.

You can get involved and help amplify dementia carers’ voices and concerns.

Together we can bring about change.

Your support can make a huge difference to what we are able to do to raise the profile of dementia carers’ experiences and needs.