To mark Carers Week 2026, an annual campaign highlighting the challenges unpaid carers face and the vital contribution they make to individuals and communities, Helen Pyper, Head of Policy and Campaigns at Dementia Carers Count, shares the types of support that real dementia carers need to manage their daily responsibilities and maintain their wellbeing.

Everything that we do as a small national charity is rooted in understanding what support dementia carers need and what changes they would like to see.

From gaining regular insights from our Carer Advisory Panel, to inviting dementia carers to respond to our annual survey, to learning from our regular interactions with the people we support, we’re always listening to dementia carers.

Everyone’s experience of caring for someone with dementia is unique, and the challenges they face vary, depending on the type of dementia involved, the carer’s personal circumstances and their relationship with the person they support. However, there is commonality when it comes to understanding what carers find hard, what support they would like and what needs to change.

In essence, what dementia carers need in 2026 boils down to three things: To be seen. To be heard. To be supported.

Carers need to be seen

Carers are tired of feeling invisible. Many feel trapped in their own homes, with over half of dementia carers looking after someone 24/7.

“I was caring 24/7 unsupported for 6 years and couldn’t go outside as I couldn’t leave my husband,” said one dementia carer.

All too often, carers find that their worlds shrink. Friends drop off and neighbours don’t offer help.

“Not one neighbour or person in our community has ever asked me if I need anything picked up while they’re out shopping,” another carer told us.

Over three quarters of dementia carers who responded to our most recent survey said that they feel lonely due to their caring responsibilities.

Ultimately, carers would like people to stop turning a blind eye and recognise their daily struggles. Loneliness among carers has become an epidemic – one we all have the power to end through greater awareness and community support.

Carers need to be heard

Carers often tell us the incredible difference it makes to their wellbeing when they feel that someone has listened to them and understood where they are coming from.

Our peer support groups and counselling service ensure that carers can speak freely and are truly heard, without judgement.

“It is a true gift to have a phone call with someone who wants to give you their full attention, listen to whatever you need to say, and give you what you need in that moment, whether it be exploring solutions or simply the space to vent,” a dementia carer said.

Carers need support

Our annual survey tells us that four in five carers are reaching a crisis point, with one in two caring without any support.

It’s an all-too familiar tale: following a dementia diagnosis, families are left to navigate the journey on their own, with very little support. They’re set adrift, and carers are left to care for someone who has an unpredictable and ever-changing terminal condition which will keep throwing up new challenges.

“Caring for dementia is a dynamic existence, it waits for no-one,” a dementia carer told our team.

Carers repeatedly confide in us that a single point of contact would make a transformative difference to their lives. This individual would be someone who they could turn to when there faced with behavioural changes that they don’t know how to manage, when personal care needs become too much, when they don’t know how to support someone to eat and drink, and when they’re feeling like they can’t carry on.

Carers also someone who can signpost them to the support they are entitled to - whether this is respite care or welfare benefits, a Carer’s Assessment or a priority GP appointment.

The challenges dementia carers face day in and day out are wide-ranging and constantly evolving. There needs to be a constant. There needs to be someone caring for the carer.

This is what dementia carers need in 2026.

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Visit: www.dementiacarers.org.uk

Carer Support Line: 0800 652 1102 (Mon-Fri 9-5)