Home Dementia Leading dementia organisations publish cross-sector manifesto for incoming government

Leading dementia organisations publish cross-sector manifesto for incoming government

by Kirsty Kirsty

Dementia is the leading cause of death in the UK*1 and is set to become the defining health and social care challenge of our time. However, despite what many believe, dementia is not an inevitable part of ageing.  

There are currently 982,000 people living with dementia in the UK, yet hundreds of thousands of people do not have a formal diagnosis, remaining in the dark about their condition and locked out of care, support and the treatment opportunities that research brings.  

For those who have a diagnosis, there is no cure – the care and treatment options that exist are often disjointed, inaccessible and inadequate, for both those with the condition and for their families and carers.  

Living with dementia can be exhausting and overwhelming, but it doesn’t have to be this way. The manifesto draws on expertise from the range of organisations involved to demand a sustained, strategic approach to research funding, clear diagnosis targets and pathways and access to treatments and specialist care for people living with the condition: 

  • Prevention – including recommendations for a cross-governmental ‘Brain Health’ National Prevention Strategy to address the health and lifestyle factors that affect our risk of developing dementia
  • Diagnosis – setting out the need for ambitious national diagnostic targets, a pilot of brain health clinics to deliver equitable high-quality services and the importance of investing to integrate promising research into accurate and deliverable diagnostic tools 
  • Support – calling for improved dementia support in primary care settings and extending the national dementia diagnosis targets to include young onset dementia, where symptoms develop under the age of 65 
  • Care – including a sustainable funding model for quality personalised care and an immediate review of the NHS continued healthcare funding application process to recognise the needs of people living with dementia 
  • Research – setting out the need to increase real-term spending on dementia research to accelerate new treatments, publish a long-term strategic approach to dementia research and promote and embed dementia research across the UK

Discussing her experience of dementia following her husband Charles’ diagnosis, Kerry said: “My final years with Charles shouldn’t have been as stressful as they were. I was forced to give up my job as an academic tutor to care for Charles full-time. From that point on, I was very much living his life rather than my own. All I received post-diagnosis was a huge package on my doorstep, containing hundreds of pages of documents to read through. I wanted someone to talk to, not a mountain of reading material. It’s not easy sharing my story, but I tell it to highlight how many gaps there are in dementia support right now. It is so difficult to find appropriate care tailored to the individual.”

Read Kerry’s story in full here.The manifesto can be read and downloaded in full here https://www.dementiauk.org/dementia-coalition/?misc=media 

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