1. Making the case for care
Professor Gill Livingston makes a strong case for better dementia care backed by high quality research.
Prevent the preventable, treat the treatable and care for people living with dementia. These are the principles at the heart of a comprehensive piece of work commissioned by prestigious medical journal The Lancet.
The report of The Lancet's commission on dementia, published in July, lays out the state of dementia prevention, diagnosis, treatment and care. Professor Gill Livingston at UCL (University College London) led 24 researchers from around the world in contributing to the report, part-funded by Alzheimer's Society.
The recommendations on prevention were widely reported in the media, but much less attention has been given to the comprehensive review of how to improve care for people affected by dementia.
'We were asked to come up with guidelines as to what we can do now to improve life for people with dementia,' says Professor Livingston. 'They wanted us to think not only about the things that are definite, but also what would be a good idea to do now, based on the balance of evidence.'
When it comes to dementia care, the report covers a wide range of topics including the use of technology, the importance of tailoring care to individuals, and what can be done to protect vulnerable older people from abuse.
What we can do now
The report highlights particularly strong evidence on how to support people who care for a relative who has dementia. We know that better support is needed - for example, 40% of family carers have depression or anxiety. How to provide this support effectively is less certain.
'A lot of people are completely sure about what to do to support families, but disappointingly most things that are tried make little difference. Just giving information about dementia isn't enough,' says Professor Livingston. Here, the commission shows the way forward by summarising two effective programmes.
In the US, the Resources for Enhancing Alzheimer's Caregiver Health (REACH) programme has been shown to help people with Alzheimer's live in their own homes for longer by giving information about the disease, skills to manage care and strategies for dealing with stress.
In the UK, Professor Livingston leads the Strategies for Relatives (START) programme, which was adapted from REACH to be delivered by psychology graduates. START promotes coping strategies for carers of people with dementia, and the research shows that it is working.
'We need high quality evidence if we're to expect scarce health resources to be spent on these programmes,' says Professor Livingston, who is leading by example. The START programme has been tested in a randomised clinical trial. This means that people who took part were allocated randomly to receive either their usual treatment or the training and support from START.
'We've just got the latest results from START, and the people who received the intervention have a fifth of depression as those who didn't, even five years later. We've changed strategies in the long term and it makes a real difference,' says Professor Livingston.
The Lancet's commission identified a number of other areas where there is good evidence for interventions that improve care and quality of life for people with dementia. These include cognitive stimulation therapy carried out in groups to maintain thinking skills, and better training for nursing home staff to improve end-of-life care.
Room for improvement
At the same time, there are areas where the evidence is not yet strong enough, and research is needed to find out what works well. One such area is technology, which could be used to improve diagnosis, help people with their everyday lives and even support carers. However, we don't yet know what is really effective, and it's clear that technology is not a replacement for human contact.
Another pressing need is to understand how to make lasting change in care homes. 'Often, when researchers run a new intervention in a care home, the intervention stops once they leave. If you're going to make a real difference you have to think about how you'll change the culture, so when the researchers aren't there it keeps going. It's clear that we need strategies that are designed to be sustainable in the long term,' says Professor Livingston.
The field is starting to change and take account of these issues, and interventions are now being designed so that they can be scaled up and delivered in a cost-effective way.
'We have to think about how we're going to put the intervention into practice from the beginning. That's something we've realised over the last five to 10 years,' says Professor Livingston. 'We need to be able to replicate what we do, so we put it in a manual, and it needs to be scalable. That means thinking carefully about how many sessions are needed and who delivers them. If you need someone very highly skilled and it's going to take 30 sessions, it's not going to happen.'
Making a difference
Once researchers have an effective, practical and scalable intervention, they need support to get it used widely.
'I don't think researchers can do it by themselves,' says Professor Livingston. 'Other key stakeholders such as Alzheimer's Society, the National Institute for Health and Care Excellence and local clinical commissioning groups play a part in making a case for these interventions and making them available.'
The commission's report has described changes that could have a big impact on dementia care, but it is also a call to action for us all to demand and deliver effective, evidence-based care for people affected by dementia.
Centres of excellence in care research
Alzheimer's Society recently announced our biggest-ever single investment in dementia care research - £6 million to establish three centres of excellence. The centres, at Newcastle and Exeter universities and at UCL (University College London), are part of a groundbreaking initiative to address the urgent need for research into dementia care.