Why we shouldn’t forget about the carers who support people with dementia

Paul Edwards

Director of Clinical Services, Dementia UK

A diagnosis of dementia can change everything. As a specialist dementia nursing charity, we know that families need tailored support to help them care for loved ones living with the condition.

There are many subtypes of dementia, which progress in different ways and display different symptoms. However, people who contact our helpline or attend our clinics, tell us that they are not given enough or sometimes any guidance following diagnosis and have no idea where to turn for help. 

People unaware of dementia support 

We recently conducted research, which shows that only 53% of people who know or knew someone with a diagnosis of dementia are aware of ‘all or most of the types of support available for people living with dementia’ in the UK.¹  

This lack of knowledge can be attributed to disjointed post-diagnostic care from health services; dementia has long been overlooked when it comes to health and social care provision despite being recognised as the leading cause of death in the UK.² 

A diagnosis of dementia impacts the whole family
— not just the person with the diagnosis.

Affecting carers involved 

With well-documented shortages in the health and social care workforce, caring responsibilities often fall to loved ones. Our research showed that family and friends are the most common source of support for people with dementia, with 45% of people who know someone with a diagnosis saying the person is, or was, supported by family and friends compared to just 33% receiving support from a GP and 24% from social services.* 

This is putting pressure on family members who need support, too. A diagnosis of dementia impacts the whole family — not just the person with the diagnosis. It’s important for carers to seek out support for themselves as the caring role can be huge and requires time, adaptability and also forgiveness.  

Forms of support for dementia 

It’s clear that more specialist support is urgently needed to help with this huge and growing health crisis. In addition to addressing the gulf between health and social care services, we also need to see more specialist dementia nurses, improved local support services and greater access to at-home care options. These three things were identified as the most beneficial forms of support for people impacted by dementia.  

[1] Data taken from a survey of 3,008 adults conducted by Censuswide in July 2023
[2] ONS data published 11^th April 2023