Fewer Than 1 In 10 Dementia Carers Offered Early Support For The Condition
This World Alzheimer’s Month, Dementia UK is calling on Andy Burnham’s Government to deliver on its promise to fix health and social care for people living with dementia, their families and carers.
New research conducted by the charity examines the experiences of those who have cared for someone with dementia as well as the expectations of those who haven’t, revealing stark differences in the levels of support available when carers need to access it for a loved one.
Half (50%) of people without first-hand experience of caring for someone with dementia expected professional support to be in place following diagnosis, yet Dementia UK finds that just 9% of carers they surveyed said professional support was offered at an early stage.
Two thirds (65%) of people with experience of dementia said that family carers were mostly or entirely responsible for organising professional support. Only 12% of people without experience of dementia said they thought that families should carry this responsibility.
Families are being left to coordinate care themselves, with many not receiving any proactive support until they reach crisis point, with 49% of carers reporting breakdown or exhaustion. Almost half (46%) of carers said they did not know who to contact when support needs changed or increased.
The new findings are published as Dementia UK launches its new Promise to Care campaign at a critical moment for the future of dementia care. The Government is currently developing the Modern Service Framework for Frailty and Dementia, which will set out how people affected by dementia should be supported in England and is expected to be published by the end of the year.
The campaign combines research findings with clinical expertise and lived experience to offer the Government three key tests to ensure health and care reforms deliver practical improvements for people affected by dementia:
• Coordinated care, underpinned by a named professional and access to dementia specialists – so families know where to turn and are not left navigating a complex system alone
• Proactive, personalised support from diagnosis through to end of life – so help arrives before people reach crisis point, not afterwards
• Dedicated support for families and unpaid carers – recognising the enormous responsibility families currently take on
As part of the campaign, the charity will meet with MPs from all major parties to discuss how changes to health and social care can help reduce the burden placed on unpaid carers and improve conditions for people living with dementia.
Trish, a carer for her husband Mike who is living with young onset dementia, said:
“Proactive, coordinated support is critical, and a huge unmet need for carers like me, to prevent us from reaching crisis point, as currently happens in supporting our loved ones with dementia. I’m supporting this campaign because I am passionate about those living with dementia getting urgent access to the specialist support needed.”
Former newsreader and journalist Alastair Stewart OBE, who is backing the campaign, said:
“I have read and reflected on Dementia UK’s excellent Promise to Care campaign and its key tests for the Government, and I am pleased to support this thoughtful, practical and comprehensive campaign. The underlying themes of coordinated care and specialist support from diagnosis to end of life are spot on.
“Since my diagnosis of vascular dementia, I have been lucky to be able to access excellent support from my GP, but the lack of psychiatric support for the depression I have developed is a growing concern for me. My wife and children are loving but unsupported carers – and I know this is a familiar situation for many families across the UK. I urge the Government to embrace Dementia UK’s three key tests and take positive action for people living with dementia.”
Dr Hilda Hayo OBE, Dementia UK’s Chief Admiral Nurse and CEO said:
“As these findings show, the millions of people affected by dementia are left to navigate disjointed systems and difficult-to-access services on their own, leaving families and carers exhausted. Every family affected by dementia should have access to specialist support, but as this research highlights, people often don’t know where to turn and hospitals and GPs don’t always have the specialist dementia knowledge people need.
“This Government has a real opportunity to deliver positive change and improve the lives of millions of people by pledging to deliver coordinated, proactive care for people with dementia and their carers, from diagnosis through to end of life.”
