Guest blog – Why is dementia research the elephant in the room?

This blog was contributed by Matthew Norton, Head of Policy and Public Affairs, at Alzheimer’s Research UK

With the Care Bill running through parliament, the development of historic reform of the funding system for social care and much political focus on the integration with the health system, one could be forgiven for thinking that the Gordian Knot that is health and social care integration is close to being severed.

Challenges to health and social care integration

There are a number of reasons why there is still a long way to go before it can be claimed that social care has been fundamentally and sustainably reformed:

  1. The challenges associated with funding reform;
  2. A lack of a concrete and proven plan to integrate health and social care with a focus on the individual;
  3. Structural issues relating to the fact that health is free at the point of use and social care is not.440x210_holding-hands

However, at Alzheimer’s Research UK we are concerned that the issue of dementia and particularly research into finding effective treatments is being missed in the debate around health and social care. Of course we have the Prime Minister’s Challenge on Dementia, and this has been responsible for a huge step forward in fighting dementia, but we know this alone isn’t enough. A focused and coordinated effort to create a step change in the way we tackle a particular issue is one thing, but in order to create a sustainable and ambitious legacy it is crucial to build solutions, learnt from this initiative and others, into the fabric of the health and care services. Doing so will continue to improve the lives of people with dementia long beyond any single initiative. The current agenda around social care presents us with one such opportunity.

Why isn’t dementia research part of the debate?

Up until now, putting the odd political sound bite aside, there has been relatively little mention of dementia and dementia research in the wider social care debate. If we take a brief look at the key statistics it becomes obvious why this is a missed opportunity:

  • Academic estimates suggest that between 70% – 80% of the 422,000 people living in residential care homes in the UK have dementia
  • Up to 25% of all hospital beds are occupied with older patients with dementia and they stay in hospital for longer than others with similar conditions
  • We estimate that dementia cost the UK £23bn each year.

These huge personal and societal costs show why we need to do more. More means providing higher quality care at a lower cost – crucially through integrating services and focusing on the person– but also investing in research  to create new therapies that will reduce the huge impact of dementia and research that one day will find a cure. Without these crucial breakthroughs the cost of supporting people with dementia is likely to become unsustainable very quickly. We are already in a very perilous situation when it comes to both health and social care funding, so it isn’t such a stretch to hypothesise that the continued rise in the numbers of people with dementia could very quickly bankrupt the system.

Ignoring the issue will only store up problems in the future

The Prime Minister’s Challenge on Dementia is helping push dementia into the spotlight, but the problem is much bigger, it will require a joined up concerted effort across communities and crucially more research. Today, only around 2.5% of the government’s medical research budget is spent on dementia research compared to a quarter on cancer. It is important that the government and opposition grasp the issue of funding for dementia research within the context of policy development across health and social care integration, and that social care reform is used as a platform to argue for, and create the space to encourage, new research funding – because without more research the best possible reforms to the health and social care sector are still built on a foundation of sand.

This is a cross Blog post with Alzheimer’s Research UK

Read more about dementia on the Age UK website 

5 responses to “Guest blog – Why is dementia research the elephant in the room?

  1. why bother researching it at all, when they can just put them on the Liverpool ‘personalised’ care pathway and bump them off without any consent at all nowadays, and the government just pretends it doesn’t know its going on ?
    Besides which, if you look at the calibre of the ‘research’ they are funding, its all nurse led questionnaire type stuff, and is a total waste of money. It isn’t ‘research’, its a series of subjective observations made by people who get out of front line nursing as soon as they can, poking keywords into databases and coming up with an opinion….pointless.

  2. Hitler had similar problems with dementia patients clogging up the healthcare system during a recession – once you start looking for a ‘solution’, and arguing it in cost terms, I’m afraid the cheapest cost option for government is always the same….

  3. Don’t agree – the entire overspend in health service budgets has been caused by the massive influx of people…most of the people with dementia fought in WW2 and built the NHS …should be less tummy tucks, boob jobs and liposuction and they should have their needs met first. I am amazed my neighbour cannot get a new lightweight wheelchair (he’ still pushing his wife at 83!), yet a rather corpulent man who is basically just too fat for his knees to support him walking to the cake shop gets a top of the range mobility scooter! Why do they need any more research funding to discover the bl##ding obvious?

  4. Mr Norton : Can you do an article about MISDIAGNOSIS of dementia in the elderly please, and how to get a second opinion? I have a friend who is aphasic due to a stroke 25 years ago, and appears to have been screened, entirely without consent whilst in hospital for an entirely unrelated condition…the nursing staff were awful….and didn’t even know she had speech aphasia (ie cant get the right word out when she needs to)….she doesn’t have a GP we know anymore, and we want this off her records …..they were then bullying her into going into a care home to avoid having to provide support at home, and if I hadn’t been there, I think they would just have forged her name on the forms anyway…..then they tried to get her to agree to ‘end of life care only’ from now on which she certainly does not want- as she wants to carry on getting treatment for anything she needs !!!! Can you do an article about how people can get this re diagnosed??? If the databases are filling up with misinformation because nurses are poorly trained in performing assessments, what use is the data to ‘research’ anyway, as it gives an entirely bogus picture of the condition!

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