Today, an estimated 850,000 people are living with dementia in the UK. There are also some 670,000 people acting as primary carers for people with dementia. Numbers are expected to double within 30 years as the population ages.
The total cost of dementia to the UK economy is estimated to be £26.3bn or £32,250 per person per year, comprising social care, health care and unpaid carers. The prime minister, David Cameron, described it as “a national crisis” when he launched his Dementia Challenge.
While there is no cure for many forms of dementia, it is possible to improve lives and save costs. Timely diagnosis and support could also help. One factor that inhibits dementia care, however, is the current system, which is fragmented both within and between health and social care. Funding dementia care in such circumstances is challenging and for many, an insurmountable barrier.
Health and social care integration is supported by all the main political parties and the government’s Better Care Fund of £3.8bn per year is seen as an important initiative to galvanise joint working.
How will the government prioritise and enact health and social care integration and how will it affect those living with dementia? What economic impact will it have? What are other countries doing? What are universities doing? How will the Care Act change dementia care?
Join us on Thursday 14 May to answer these questions and more.
The live chat is not video or audio-enabled but will take place in the comments section (below). You may also get in touch via sarah.johnson@theguardian.com or @GdnHealthcare on Twitter.
Discussion commissioned and controlled by the Guardian, hosted to a brief agreed with the University of Derby Online Learning. Funded by the University of Derby Online Learning
The panel so far
George McNamara, head of policy and public affairs, Alzheimer’s Society
Steve Palmer, press and public affairs officer, Social Care Institute of Excellence
Zoe Harris, former carer who set up the not-for-profit social enterprise Care Charts UK, developing ideas to improve quality of life with dementia
Mayumi Hayashi, research fellow, Institute of Gerontology, King’s College London
Gill Phillips, creator of Whose Shoes? – Making It Real, a co-production tool helping people work together to improve lives
David Robertshaw, academic lead for health and social care, University of Derby Online Learning
Catherine Murray-Howard, deputy chief executive, Community Integrated Care
Jennifer Bute, former GP who developed younger onset dementia and now lives in a dementia friendly village
Karen Harrison Dening, director, Admiral Nursing
David Pearson, past president, Adass
The panel started off talking about the issues people with dementia come up against in accessing health and social care services at the moment:
Guardian contributor Part of the dementia Challenge was to improve timely dementia assessments; people with suspected dementia are assessed by a memory clinic after an average six weeks. This is far too long, when compared with other services such as cancer which has a two week wait.
Support! Finding the right support at the right time for people with dementia AND carers. Things joining up. Avoiding hospital admissions - and if hospital is necessary, for staff (particularly non specialist staff) to be able to understand and care for people as individual human beings. My Mum-in-law was moved from one ward to another and thought she was in the basement! Horrible.
Steve Palmer shared his experience:
Guardian contributor I've thought about this subject a lot recently. My uncle's got dementia - he's just spent two weeks in hospital and is now home. Good. He's been given some community support. Good, but the family was told that his 'medical situation is now resolved'. Well; I wonder if you can disassociate his dementia with other medical conditions? He got ill through a bug that the rest of the family got, but which took him longer, a trip to hospital, to recover from. This seems to be a classic bit of non-integration; the hospital is finished with him and he's back home, with a bit of post-hospital support, but that will end soon. I just hope that it doesn't all become a false economy and we'll see him back in hospital sooner than he should be.
The panel talked about the role of education in supporting integrated health and social care for people with dementia:
Guardian contributor Very important but I have been to education sessions for an organisation that was 10 years out of date Perhaps we need a national standard for such!
Guardian contributor David - this is absolutely crucial and touches on a wider point, namely: How we value social care. There is an unhealthy disequlibrium towards NHS training, as opposed to the social care sector. This must change. Possibly one health and social care body responsible for workforce development.
It is great to see so many people across health and social care becoming Dementia Friends, but delivering quality demetia care must go beyond awareness.
What should the next government’s priorities be?
Guardian contributor Dementia is clearly on the health and care map, but we are yet to see teh transformation of dementia care embedded within the system. So what else is needed?
- clear entitlements - so people with dementia know the kind of care and support they can access and expect. This could be a national framework, with local flexibility to meet individual and communities needs.
- A dementia integration fund - to provide innovation and focus on person centred dementia care
- national standards for quality of care and minimum training standards
- Increased investment in research. Despite the increases, the UK still spent seven times less on dementia research than on cancer.
- An end to the Dementia Tax - ending the damaging cuts to social care and plugging the gap in social care funding is essential. Without this, the ambitions and political drive to improve dementia care will be significantly limited.
Guardian contributor Gill you make a really great point here. Around half of people who have dementia also have depression but as an example less than 1% of Practice Nurses have mental health training. Given what we've been talking about, most of the health and social care workforce aren't prepared for this iceberg.
Can the UK learn from abroad?
Guardian contributor My 'dementia' friends in the states are jealous of what is being done in the UK and what is free on the NHS everything has to be paid for there. There is nothing really in Asia according to my friends there. Australia have quite a bit particularly in getting those with dementia involved with the discussions Germany is also a bit fragmented it seems
Guardian contributor The World Alzheimer's Report of 2013 says that by the year 2050 there will be 277 million ageing adults who will be expected to be dependent on others for personal care, of which around a half will have dementia. Clearly this is a global issue and we need to form a cohesive approach.
I've been investigating developing countries as part of some course development we've been doing. Often developing countries have a very underdeveloped health care and system and a none existent social care system. For example, in Nigeria, social care and social work are unregulated and there aren't strong moves to regulate it. This means that care is provided by family members ad-hoc. I'm actually grateful we have some sort of system, even if it isn't perfect.
Everyday we hear about the struggle people with dementia getting a timely diagnosis. This is absolutely vital to access treatments, care and support. While progress has been made in this area, many people with dementia are also at their wits end with the lack of timely and quality dementia care in their area.