Key voices within the sector are calling on the new Government to take action and urgently address and improve access to dementia diagnosis, care and support, as well as funding research and preventative measures.
Leading dementia organisations joined forces to publish a new Dementia manifesto ahead of the General Election on 4th July. This collaboration from Alzheimer Scotland, Alzheimer’s Research UK, Alzheimer’s Society, Dementia UK and the UK Dementia Research Institute called on the Government to take action for the one in two of us who will be directly affected by dementia in our lifetime.
With the right support, the UK can lead the way in transforming diagnosis, care and support for everyone affected by dementia now, as well as research to prevent, reduce and delay dementia for future generations.
The full manifesto can be read and downloaded here dementia-uk-dementia-coalition-manifesto-2024
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.”
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*ONS, registered deaths in England and Wales in 2022
About Alzheimer’s Research UK
Alzheimer’s Research UK is the UK’s leading dementia research charity. We’re working to revolutionise the way we treat, diagnose and prevent dementia. But we will not stop there. With your support, we will keep going until every person is free from the heartbreak of dementia. We exist for a cure.
About Dementia UK
Dementia UK is the specialist dementia nursing charity that is there for the whole family. Our nurses, known as Admiral Nurses, provide free, specialist advice, support and understanding to anyone affected by dementia, whenever it’s needed. With the support of an Admiral Nurse and Dementia UK – whether it’s on our Helpline, through our Clinics service, or in the community – families we support know they’re not alone.
If you need advice or support on living with dementia, contact Dementia UK’s Admiral Nurse Dementia Helpline on 0800 888 6678 or email helpline@dementiauk.org. The Helpline is staffed by experienced Admiral Nurses.
About Alzheimer’s Society
We are the UK’s leading dementia charity and the only one to tackle all aspects of dementia by giving help and hope to people living with dementia today and in the future. We give vital support to people facing the most frightening times of their lives, while also funding groundbreaking research and campaigning to make dementia the priority it should be. As a Society, we are made up of people living with dementia, carers, trusted experts, campaigners, researchers and clinicians. For more information, visit alzheimers.org.uk
About the UK Dementia Research InstituteThe UK Dementia Research Institute (UK DRI) is the UK’s leading national biomedical research institute dedicated to changing the outcomes of people living with or at risk of neurodegenerative diseases. Established in 2017 by its principal funder the Medical Research Council, in partnership with Alzheimer’s Society and Alzheimer’s Research UK, the multi-million-pound Institute is hosted across six leading UK universities: UCL, University of Cambridge, Cardiff University, University of Edinburgh, Imperial College London, and King’s College London. The UK DRI is focused on developing new treatments, technologies and diagnostics for people with all types of dementia. www.ukdri.ac.uk
Alzheimer Scotland is Scotland’s national dementia charity. Our aims are to prevent, care and cure dementia, and ultimately make sure nobody faces dementia alone. We have been raising awareness of dementia and campaigning for the rights of people with dementia for over 40 years. We provide support, advice and information to people living with dementia, their families and carers through our local and national services and activities, including through our Brain Health and Dementia Resource Centres in 25 different locations across Scotland and our 24-hour Freephone Dementia Helpline, 0808 808 3000.
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